tag:blogger.com,1999:blog-64481453157408335212024-03-05T10:15:47.529-06:00True Confessions of a Minnesota MomThe daily goings-on of a stay-at-home mom of complex children in central Minnesota.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.comBlogger94125tag:blogger.com,1999:blog-6448145315740833521.post-5976987144844788312013-08-13T14:05:00.002-05:002013-08-13T19:04:20.338-05:00Transplant lists and non-compliance: Who decides who gets a heart?The internet is abuzz today with outrage over a teen being kept off the transplant list due to suspicions that he will be non-compliant. You can read about that <a href="http://gma.yahoo.com/teenager-denied-heart-transplant-over-noncompliance-183726491--abc-news-wellness.html?vp=1" target="_blank">here</a>.<br />
As a transplant momma, I have to weigh in on this one.<br />
When you are worked up for a transplant, you go through extensive screening. We are talking pyschologists, financial counselors, docs, nurses, pharmacists, social workers, and surgeons. Each patient is assigned their own transplant coordinator to act on their behalf.<br />
Transplant is not "just" a surgery. It's a complete lifestyle change. If you do not follow the changes required of you, you WILL reject your organ. It's that simple.<br />
My two daughers, 4 and 7, would have been denied a transplant, too, had I not been committed to making sure that they take all their medications, are doing their best to avoid germs, follow proper food safety measures, and get to all of their doctor's appointments.<br />
Some will cry out that it's unfair. That it's medicine's way of "playing God" and picking and choosing who can and cannot have a transplant. In this case, some are playing the race card, as the teen in question is black. And of course, some are blaming this on our president.<br />
Here's the bottom line: there just aren't enough organs to go around. It's a sad truth that people die every single day waiting for a lifesaving transplant. The decision to list or not to list people is not taken lightly whatsoever. If, while on the list, a patient develops a fever, they will go inactive on the list. This is to ensure that the transplants that are performed are given the best shot at being successful and saving the most lives. It has nothing to do with economic status, race, gender, or whether your doctor likes you or not.<br />
Think of it this way: Say there's a new drug that was developed that cured cancer. The hitch? That it was not widely available, and there wasn't a way to get more faster. Say you have inoperable end-stage cancer and this drug would cure you, but they gave that drug to someone who turned around and flushed it down the toilet. How mad would you be? Not only did this person in essence take your change at living, but they wasted their own. It's a little bit like that in this situation. <br />
If the doctors have reason to believe that this kid will not comply with post-transplant protocol, they really have no choice but to make the decision not to list him. Doing anything else would be irresponsible. It would be willfully wasting a good organ, when there are plenty of people out there that would do whatever the doctors asked of them to get that transplant. People that would treat it as the gift that it is, cherish it, be grateful for it, and take excellent care of it. We don't know the whole story behind the doctors' and/or UNOS' decision to not list this boy. I am sure that further details cannot be relased, as it could stir up a storm of litigation. Keep in mind that not everything is as it seems on the surface. Also remember that just because he is denied NOW doesn't mean that that will never change. He CAN commit to showing the transplant team that he's ready, willing, and able to do what needs to be done. He CAN make it happen. <br />
As a parent who's been there, twice, I applaud the doctors and UNOS for their stringent and thorough screening. I don't envy them their position. It must be awful to deny someone. After all, doctors are who they are because they want to save lives, and this is the opposite of that goal. <br />
Until more organs are available, or until they can grow people their own replacements from stem cells (Research is progressing on this, which is so encouraging.), the transplant teams around the nation have no choice but to handle things this way. They want to be giving as many people as they can a shot at a successful transplant, and non-compliance is not the way to get there.<br />
I cannot imagine being in that family's shoes right now, nor can I imagine how the medical community must feel. I will continue to pray for all, and hope that things will work out in the end.<br />
In the meantime, I encourage all of you to be sure that you are a registered organ donor. Organ donation is a complicated thing, but it's a beautiful thing as well.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com1tag:blogger.com,1999:blog-6448145315740833521.post-83469045247972913442013-08-07T21:01:00.002-05:002013-08-07T21:01:25.042-05:00Leaving a legacyIt's been a hard week for me. <br />
The CHD and transplant communities lost a brave boy named Cameron one week ago today, and yesterday was his funeral. I was there, of course, to say goodbye to this warrior child, and I was amazed at what I saw. An absolute sea of red (we were asked to wear Cameron's favorite color to the service, and we all were happy to do so) filled that church. It was heartbreakingly emotional, yet so inspirational. Cameron touched many lives and will continue to do so through his brave journey.<br />
As we left the church, I got to thinking about the legacy these transplant kids leave. <br />
Every single day, they defy the odds. Every heartbeat is one that without the miracle of organ donation would not happen. So many want their kids to grow up to be President, to make millions of dollars, to invent something no one can live without. Transplant parents? We just want our kids to <i>be</i>. That's it.<br />
Today is Madi's four-year heart transplant anniversary. I am amazed and grateful every day, but on these special anniversaries, I get to thinking even more. What do I want for Madi? My greatest hopes for her are simple. I never ever want her to think that she is above lending a helping hand to someone in need. I want her to strike out in the world and do what she loves, whatever that ends up being. (I am laying my bets on something to do with cars.) I hope that she does everything with a sense of gratitude for where she is in life, and never takes it for granted. I want her to appreciate life down to the smallest of things-the miracle of rainbows, the smell of fresh cut grass, the tiniest of ants crawling up the driveway. I want her to ask questions, to have a thirst for knowledge, and to seek the answers to those questions. If she decides that being a janitor is exactly what she wants to do with her life, then so be it. I just want my kids to know that no matter what they do, to do the best they can and leave the rest to fate. Cliche? Maybe. Yet it's exactly what I want for my daughters.<br />
Kids like Cameron, Tru, and Nathan (just three of the heart warriors I know that have recently gone on to Heaven) leave a legacy that cannot be matched. I hope that when people speak about my girls, they can say the same. That they are living a legacy that we all would strive to, while doing honor to the brave, incredible warriors that have left this Earth way too soon.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-61323622337860602842013-07-29T22:05:00.000-05:002013-07-29T22:05:26.745-05:00Losing my religionWell, life got away from me again and I MAJORLY slacked on the blogging front. I know, no surprise there. But hey, I have two kids under 8 with the energy capacity of Red Bull-amped chimpanzees, so who could blame me?<br />
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Anyway..<br />
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I've said it before, I will say it again: I was raised Catholic. Did the baptism, communion, confession, stuff. Sang the hymns, can still repeat the proper responses expected during Sunday mass. My kids are both baptized. You know what I took away from my years in church? There's a lot of Latin in Catholicism. And the Bible? SO not a user-friendly read.<br />
As I have grown older, I have come to realize that my church is wherever I make it. My "religion" is simply my relationship with God. I have faith. I just don't pin myself to an "organization" anymore. That's all religion really is, if you think about it: an organization. Just like the Parent Teacher Association at school. You have the devout, devoted, crazy-busy, living-for-the-organization folks, just as you do the uber-perfect, over-scheduled soccer mom in the PTA. The church, just like the PTA, only seems to like you if you have something to give, and if you fit with their concept of "right." I am not a PTA mom. I don't fit anyone's mold.<br />
So many use their religion as a platform on which to stand and spew judgment. They justify their intolerance of others who they think are "wrong" with the fact that they go to church on Sunday, or read their Bible. I don't know about you, but my parents raised me to believe that we are all humans deserving of love, understanding, compassion and acceptance. It shouldn't matter who you love, where you worship, if you read the Bible or not. If you are a good, hard working, productive, honest citizen you're all right in MY book. I could care less if the person you are married to is the same sex as you. Why is that my business? If you pray, cool. If you don't, that's also cool. Cause guess what? YOUR life is YOUR life. Unless you are out there committing crimes or being a jerk, it should not matter what you do with your time, or who you do it with. <br />
I know I have blogged about this very topic before. You may be sick of reading about it. But the truth of the matter is this: I wouldn't have to blog about it if I wasn't faced with overriding judgment every time I turned around! It's everywhere!<br />
What happened to holding yourself accountable for your own doings? Owning your rights and wrongs, your sins and your triumphs? Everyone says that the world is going to hell in a handbasket. They're right. But you know what? The fact that the Pledge of Allegiance has been taken out of some schools has nothing to do with that. We are so busy looking for someone to blame for all the bad in the world, that we forget to stop and look in the mirror. We forget to reach out a hand to someone in need, no matter where we are at in our own lives. We forget to band together as a country and act like the beautiful, brave, free melting pot that we are. We judge people who are different colors, who love differently than we do, who practice a different faith than we do. Where's the love in that?<br />
I am conflicted. Really and truly. How do I reconcile the church of my childhood with the wonderful people in my life that some religions say are horrible? How can I look at my kids, remember what they faced, and think about what they have yet to face, and not want, no, NEED something to believe in? I guess it comes down to just trying to be the absolute best person I can be. I know that I will fail, and I will fall on my face, and it won't be graceful. But you know what? That's OK! <br />
If you truly believe, you know that you don't need a building full of like-minded people to tell you that you are a good person. You already know.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-19258780803577704602013-03-17T22:31:00.000-05:002013-03-17T22:31:03.904-05:00The carousel churchIt's been a battle. <br />Raising two children is a task in and of itself, and when you throw dilated cardiomyopathy, brain injuries, and two heart transplants in the mix, it gets downright chaotic. There have been many times when I felt like I was pushing a three-ton rock up a steep hill and just when I thought I had things under control, the rock would go tumbling down the hill, dragging me with it. Round and round we'd go, the boulder and I, finally landing in a disheveled heap at the bottom of an abyss. Looking up, what did I see but yet another hill. A steeper one. So it goes.<div>
But every now and then, a moment of clarity comes through. A burst of understanding, of knowing that the effort is not unnoticed, and not unrewarded. I had one of those moments this weekend.</div>
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We took the kids to the Mall of America to visit the MN Sea Life Aquarium. The girls have always shown an immense love of all things that live in the sea. No matter how many times we visit the aquarium, their enjoyment and awe is always as fresh as the very first time we went. This visit was no exception. Madi and Sydney oohed and aahed at the giant tank of rays, and gasped when they spotted the neon-green eel wrapping itself around a rock. They "petted" starfish and sea urchins, and were over-the-moon excited at the tanks of jellyfish. As I watched these creatures swim past (or overhead, in the case of the part of the aquarium that's in a tunnel), I tried to look through my daughters' eyes. Such a simple thing as a turtle seemingly near enough to touch brought them such great happiness. </div>
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Then it was off to Nickelodeon Universe, the Mall of America's indoor amusement park. The lights, the sounds, the shrieks of delight from people on the various rides, was so exciting to my children. Madi got to ride on the ferris wheel, and literally skipped her way into the line with her daddy. My sister, Sydney and I waited on the ground below, and waved furiously every time we saw that little blond head go past. After that, Madi and Sydney both got to take a ride on the carousel. It was Sydney's very first time on a ride of any kind. She had always been either too little or too sick to be able to enjoy a ride, something that was always heartbreaking to me. I wondered if she would be a bit scared, but that worry quickly passed. She sat up on that horse, laughing and waving like nobody's business. Her smile was as wide as I have ever seen it, truly what you could describe as a "megawatt" grin. It took my breath away, and brought tears to my eyes. For that moment in time, Sydney was "just" a kid, having a great time with her parents, sister and auntie. She didn't have to stop for therapy or medication, or have a doctor's permission. Her only requirement was to "remain seated for the duration of the ride." Just like everyone else.</div>
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Without an organ donor, she wouldn't have had that moment. As the carousel kept spinning, full of bright lights and calliope music, I said a whispered thank you to the donor family for this moment, and for all the moments that Sydney gets to have. (And Madi too!) I prayed that somewhere out there, the thought that their loved one lives on in a bright, happy, beautiful sunshine girl brings them a bit of peace. I prayed that they could feel my overwhelming gratitude and love for them. And then I went to meet my family as they got off the carousel, my girls grinning like fools.</div>
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Praying at the carousel... who'd have thunk? Just goes to show you, "church" is anywhere and everywhere. Faith is in your heart, especially if you are blessed enough to have a transplanted one.</div>
Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com1tag:blogger.com,1999:blog-6448145315740833521.post-166807584037138542013-02-13T18:44:00.001-06:002013-02-13T18:44:33.075-06:00How CHDs affected meSomeone asked me not too long ago how I think being in the CHD world has affected me the most. I am still quite baffled by the question. It's part of the reason why I haven't blogged at all this week, CHD Awareness Week. I have been somewhat lost in thought about this topic, as there are many ways my life has changed. I don't feel like I can pick just one, but here are the ones that make the top of the list.<br />
<i><u>Appreciation</u></i><br />
It's an oft-repeated mantra of people who have faced down demons. "I learned to appreciate the little things." But it's so, so true. It doesn't matter that I don't live in a gigantic house with a fleet of shiny new luxury cars to ride around in. Nor is it a big deal that we are a one-income household. Of course, we'd all like to have a little extra money every month. To be able to afford to go on vacation would be fabulous. In the scheme of things, though, it's no big deal. We make do. We dine like kings without leaving our house, and marvel at all the little things we do every minute of every day. Things that normally wouldn't warrant a second thought. You know how new parents will go watch their newborn sleep, totally in awe of their child? I still do that and Madi is darn near seven years old. It was my husband's birthday yesterday and I asked Madi if she wanted to sign his card. She did, and scrawled a near-perfect "M" inside the card. I couldn't have been more thrilled if she'd written the latest New York Times bestseller. I have been brought to tears at the sight of my child finishing a plate of spaghetti. Seriously. And then I promptly laughed at myself, which brings me to the next item...<br />
<u><i>Humor</i></u><br />
Sometimes, life deals you a crappy hand. Sometimes, it happens more than once. When you have some of the world's greatest doctors totally stunned at the fact that both of your children have now needed heart transplants, what is there left to do? You laugh. When your child hasn't pooped for two weeks due to all the narcotics that they've been on, you laugh at the poor nurse that has to give her an enema. You laugh even harder at the lucky one who gets to bathe her after the apocolyptic "code brown" that ensues. When your daughter learns to get out of restraints designed to keep her from messing with her IV or feeding tube, you just sit back and giggle. With nurses around to take care of their every need, you get a glimpse into your child's personality that you may not have noticed before. Instead of worrying about changing diapers or cleaning up vomit for the third time in a day, you get to do the playing, singing and laughing with your little one. As time goes on and your kiddo looks better every day, it feels so wonderful to crack a smile. To truly enjoy all the personality traits you never knew your child had. And to share your smiles with someone you love, which is the next topic.<br />
<u><i>Community</i></u><br />
More often than not, at least in my case, when the going got really tough with my children, people I thought I would be able to count on for anything turned tail and ran. For whatever reason, they just couldn't handle this new way that I had to live my life. I am ok with it now, most of the time, but as it happens it cuts like a knife. So what's a modern mom to do? Why, turn to Facebook of course! There is an online community of heart parents that are out there just waiting to lend their support and knowledge to a newbie. When I was at my lowest, they were the ones I turned to because they knew where I was at mentally and emotionally. I didn't have to go into lengthy descriptions of what this term or that medication meant-they already knew. They prayed, wrote sweet letters and cards, and sent care packages like no one's business. They came for visits armed with chocolate and hugs. They stood by my child and held her hand as the heart monitors and ventilators beeped, ignoring the whirr of the ECMO machine like it wasn't even there. They cried with me when things got scary but never ever allowed me to lose hope. They let me know that they were my family and always would be. There is nothing so valuable as someone who totally understands where you're coming from. I guess, besides the fact that I am most thankful for my two miracles, this is the part of the CHD world that's affected me the very most. It's the club I never wanted to be a part of, this heart parent thing, but in them I have found home.<br />
Aside from the absolutely incredible gift that my children were given by their organ donors, knowing where I belong, and that I will always be loved unconditionally, is the very best gift of all.<br />
<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com1tag:blogger.com,1999:blog-6448145315740833521.post-17184455080444859732013-02-04T22:09:00.004-06:002013-02-04T22:17:31.973-06:00Why I'm angry at heart monthBe warned: I'm mad.<br />
It's February, which means that it's heart awareness month. February 7th-14th is CHD Awareness Week. We get busy in my household in February, hoping that we can spread awareness, pay forward the kindnesses given to our family, and maybe educate some people on what it's like to have a congenital heart defect sneak up on you and slap you in the face.<br />
I post pictures of my children when they were in the hospital. Post-surgical pics full of tubes and wires. Photos of my children with ventilator tubes in their throats. Feeding tubes down their nose. Catheters. You know why I do that? So that people stop and take notice, and perhaps take a moment to educate themselves on the number one birth defect. Also so that my girls can see that they are strong, and they have beaten the odds, and overcome some serious stuff. <br />
On Facebook (and in "real life"), I have lost friends because they said they couldn't handle the pictures. Or my posting of CHD facts. Or when I repost fundraisers for people who have lost their children, so that they can get help paying for their child's funeral and/or headstone. They tell me it's "sick", "wrong", "annoying", "too sad", "disturbing." Do you think I LIKE the fact that my children have gone through this? That I ENJOY thinking about my daughters being on life support, going through strokes and CPR? Or that I take some kind of sick pleasure begging people to throw a few dollars at a fundraiser for a little boy who died in the same room that both of my kids "lived" in post transplant? Believe me, it's no freakin cake walk. I hate that my daughters have had to face this. That any kid does. Or any parent, for that matter. The truth of the matter, though, is that without constant posting, people brush it aside. Even with the CHD postings that my heart family and I flood Facebook with, I strongly suspect that most people have forgotten about it in the amount of time it takes them to scroll their mouse past a posting.<br />
Would you ignore my posts if my children had cancer?<br />
If they lost their hair?<br />
If I was trying to raise money for pediatric cancer research, or for a child who lost their battle to cancer?<br />
No. You wouldn't.<br />
You'd donate to fundraisers. You'd come to our blood drives. You'd look at pictures that showed a child's battle with cancer and remark about how strong they were, what a warrior they were. You'd do whatever it took to help a local family pay for their child's headstone, without a single question about why it was so expensive or why they can't pay for it themselves. You'd help deliver blankets, books, and toys to kids in the cancer ward at the hospital. You wouldn't tell me to stop being so vocal about my child's illness, and you certainly wouldn't criticize my parenting for never, ever wanting to stop until there was a cure.<br />
Why?<br />
Is my child not as important?<br />
Do heart kids not deserve a chance, too?<br />
Isn't it worthwhile to allocate funds toward research to combat the number one killer of our children?<br />
I give to pediatric cancer research. I participate in fundraisers for kids with cancer. I never think twice about it. Because it's a child that's in pain, a family that's floundering in their difficulties. I take no issue with the attention that cancer patients receive. I just want the same for my own children.<br />
I want to be able to post things about congenital heart defects and organ donation without people rolling their eyes, saying "There she goes again." I want people to want to know more about CHDs and how they can help eradicate this monster. I want my friends and family to support me and mine by supporting the efforts I try to make toward CHD awareness. For them to never forget that CHDs do not discriminate. That they take more lives than all childhood cancers combined. That they are severely underfunded research-wise, and the healthcare costs for them reach into the billions every year. Yes, billions. With a b. I want people to stop what they are doing when they see a picture of a heart baby, full of tubes, and think about the tremendous courage of the child and their family. To reach out to them. To pray for them. To truly care about this fight that so many of us are in.<br />
This is our world. We live it every day. Heart parents, like any other parents of a child with a serious medical condition, just want to be heard. <i>Really</i> heard, and not just for one week out of the year.<br />
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<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com8tag:blogger.com,1999:blog-6448145315740833521.post-34266799747689623482013-01-27T21:29:00.001-06:002013-01-27T21:30:10.329-06:00Don't be judgin' meIt's getting harder and harder to keep my mouth shut. Not that I generally have a problem expressing my opinions but I suspect what I am about to say will cause some uproars with people. It's cool. I am ready for it. At least I think I am. So here goes:<br />
I am pro-choice, and pro-birth control. Yep. True story.<br />
However, I am NOT a "baby killer" or a "murderer", and I am rather tired of being labeled as such.<br />
Now let me make this clear. I do not think that abortions should be a form of birth control. I do, however, believe that if a woman is raped and gets pregnant, she should have the option of an abortion. That's my prerogative to believe it, and no amount of comments from others will change that. Rape is a crime, and there's no reason that someone should be forced to carry a baby that is the result of that. <br />
Birth control? I take mine every day. I am involved with a lot of support groups online that center around having special needs kids, kids with heart issues, and of course ones that are for transplant families. I can't tell you how many times I have been asked "Are you having another child?" I would have loved to have had another baby. However, with my two children both needing heart transplants, there's obviously some pretty dominant nasty stuff in my husband's and my combined gene pool. Time and time again, I hear "Well you shouldn't take birth control, you should let God decide. Because God will take care of your children no matter what." That statement makes me so mad I could scream. I believe that having another child would be irresponsible. I also believe that God is okay with birth control-why would He want anyone to purposefully bring a child into this world that could spend their life suffering? And yes, God does provide. He doesn't pay my bills though. He doesn't make it so that my kids wouldn't have to go through what they did. I learned many valuable lessons along the way, true. I continue to learn due to what has happened. That doesn't mean that it's easy. It is not what anyone would want for their children, that's for sure. And while we are on this topic, I may as well mention the phrase "God doesn't give you anything you can't handle." AHHHHH! I think this may be the saying that I hate above all else. Really? So my friend who lost her son.. she should "just handle" it, because God says so? Nope, nope, nope. PLEASE, people, think about what you are saying when this phrase comes to your mind. It's so stupid, really. If it were true, then some of the people in the world are "able" to "handle" loss, therefore they go through it? No, I think the more appropriate expression may be "God helps us handle what we are given." <br />
So back to the whole abortion/birth control topic: stop calling people baby killers. It's disgusting. I am not a baby killer, nor would I ever want to kill a baby.. or anyone. I just believe that it's not the government's place to tell me what to do with my body. That's a right I alone hold, and no one will be telling me any differently.<br />
You're pro-life? Cool. I respect that completely. Don't believe in birth control? Fine by me. Not my body, not my business. Just don't use your opinions as a platform to judge or belittle others. Remember, there is only one judge. And it's not you. Or me.<br />
<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.comtag:blogger.com,1999:blog-6448145315740833521.post-2747169624602312922013-01-21T19:04:00.000-06:002013-01-21T19:04:54.384-06:00Think before you postLiving in an internet-based society, we have the world at our fingertips. We post every thought we have on our social media sites. We take pictures of our dinners and put them up for people to see. For the most part, it's all harmless. <br />Then, I run across something like this:<br />
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I LOVE someecards most of the time. They are usually heavy on sarcasm, just like me. This one, however, just made me mad.</div>
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You see, my children are on medical insurance provided by the state of Minnesota. They also receive grant money from the county to help with expenses that typical families do not have. Know where all the money comes from to fund these programs? Yep, taxes.</div>
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Believe me, I would much rather be a working mom with two kids in school who have never been sick beyond your everyday run-of-the-mill childhood illnesses and injuries. If you know me, you know that I have two daughters and both have had heart transplants. I have spent countless weeks in hospital rooms with my children, basically living in various ICU rooms. A situation not conducive to working a job out in the "real world." It's not that I sit around and eat bon bons all day long. Or collect state support and then go out and buy lobster tails and steak. Yes, I have an iPhone. It's one of the third generation ones (in case you weren't counting, Apple is now on their 5th generation.) and was given to me as an upgrade when my phone conked out. Yes, my children have an iPad. It was gifted to them to help with their special education needs. And it has helped immensely.</div>
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My husband works. As much as he can. Going through two heart transplants in three years takes away more hours than you'd think, especially when you have another child at home that needs to get to school, be fed, etc. The money that we make is of course much less than we'd like to, but we are thankful that our children are here and make whatever sacrifices are necessary to provide a great life for them.</div>
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I guess what I am trying to say here is this: be careful what you share. You could be hurting someone like my family, whose only choice was to put their children on state medical insurance. Who have an income in their family and pay their fair share of taxes, but need an extra push. Whose lives are nowhere near where they thought that they'd be. Who'd rather that you didn't judge them based on their needs, but on what's in their heart.</div>
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I know that there are people out there that abuse the system. I'm not naive. But that doesn't mean that everyone who's getting a little help from the government in one way or another is scum. Or ghetto. It also doesn't mean that we aren't thankful for those taxes you pay to fund the programs that we need. </div>
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Next time you see someone at the grocery store with a Coach purse and an iPhone whip out her WIC checks, don't judge. You don't know if that purse is even real. And if it is, if it's a gift. You don't know who bought her that phone. Or who pays for it. You don't know where that woman has been, or where she is going. </div>
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You also don't know when it might be you that needs a little help.</div>
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So before you push that "share" button, think about the people around you. Do you know their full story? I bet you don't. I hope it leads you to be more thoughtful in regards to what you post. </div>
Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com1tag:blogger.com,1999:blog-6448145315740833521.post-81205644070172233142013-01-18T12:17:00.001-06:002013-01-18T12:17:54.732-06:00On transplantHeart transplants are miraculous.<br />
You know what else they are? Suckfests. <br />
Yep, I said it. Heart transplants suck. Don't get me wrong, I am beyond grateful for the medical science that has kept my children alive, happy, and growing. On days like today, though, I am just.. well.. kind of disgusted with the whole thing. <br />There are so many people out there waiting on a heart. But there just aren't enough to go around, and some will not make it to get that heart. Some, like my kids, are exceedingly (you might even say miraculously) lucky to not have to wait months on end in a hospital bed for their new chance at life. Far too many wait. And wait. And wait some more. It's hard-emotionally, physically, financially. As a parent you just want to fix whatever is wrong with your child. You want to make everything better, and if you can't you want to take their place so that they don't have to deal with a single iota of pain or suffering. In these instances, there's not much you can do but try your hardest to not go insane. Perhaps that's the hardest part-the loss of control. It's a helpless feeling to not have much say over your kid's day to day life.<br />
And then, THE day comes. You get the news that somewhere out there, a family is choosing to save your baby in the face of their own terrible grief. And again, you give up control. You kiss your child, and pray over them, and cry. You watch them wheel their bed down the hall and onto the big elevator to the operating room. You wonder if you will ever see your child again. You pray that you will. You cry some more. <br />
Then you wait. You pace the waiting room, jumping up every time someone in blue scrubs comes your way, hoping that it's a surgical nurse with a great update. You sit in the hard waiting room chairs, putting a couple together to lay down on, because they've told you that it's going to be awhile and that you should probably rest. HA! As if you could possibly shut your mind off while you know that a few floors below you, a team of brilliant minds is creating a new life for your child.<br />
When it's over, you breathe a sigh of relief, but you know it's not the end. It's a new beginning. There will be heart monitors, blood draws, and much much more. The therapies in and of themselves can be overwhelming. <br />
When life settles down a bit-maybe even after you've gotten out of the hospital-you realize just what a huge ordeal your child has gone through. It's evident in the zipper scar running down their chest. It stares you in the face as you lay out medication after medication. Or while you take your child's blood pressure, diligently recording their daily vital signs and watching for any changes that could signal troubles.<br />
My children run. They play. They laugh, sing, watch movies, beat up on each other, give kisses, and fill my life with light. They are beautiful, wonderful miracles. They are my life's greatest accomplishments, and I will never stop looking upon them with profound gratitude that God decided to make me their mommy.<br />
But damnit, why can't it be easier!? Why do I have to listen to my daughter scream her way through therapy because she is fearful? Why do I have to watch my other daughter struggle to understand concepts that are so basic, she should've learned them two years ago? When she collapses in tears because something is just too hard, my own heart breaks. It sucks.<br />Before I became a mother, I dreamt of the life I thought I'd have with my children. I was so far off the mark, it's not even worth mentioning. Because of heart disease, my kids live a very very different life than the one I had hoped they'd have. There are many more fears, anxieties, and frustrations. And LOTS more tears than I would've liked. Things that shouldn't be hard are so excruciatingly difficult for my kids that it makes me angry. Why my kids? Why? It's enough to make me want to run to the nearest cliff and take a leap off the edge some days.<br />
Then I have to pull myself back from the edge. Put myself in check. Even when we take three steps forward and two back, I need to remember to focus on that ONE step forward. Tiny though it may be, it's progress. Sometimes, the little things really are the big things.<br />
They say that nothing that's good in life comes easily. Judging by the hard work and struggle that both of my daughters have endured, I'd say that they are both made for greatness.<br />
Maybe heart transplants aren't such giant suckfests after all.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com2tag:blogger.com,1999:blog-6448145315740833521.post-23997438157198789602013-01-07T12:38:00.000-06:002013-01-07T12:38:06.435-06:00Living in the bubbleI am pretty sure that the next time someone tells me to let my kids "live their life to the fullest" and "don't keep them in a bubble", I may just scream. <br />
I don't understand why being cautious is now looked at as being over-paranoid. It's not like my kids never see the light of day. I don't swaddle them in bubble wrap before leaving the house, nor have I installed a Lysol decontamination room in my house. Madi goes to school. She plays outside at recess. We go to movies. We've gone to Sesame Street Live and Yo Gabba Gabba Live. I know for a fact that when we're outside, much as I don't like it, Sydney sneaks tastes of dirt. And we are fine, for the most part.<br />
When it comes to flu season, of course, we are much more cautious. We insist on flu shots, both for our family and for people visiting our house. We are adamant that you take your shoes off when you come in the house. That was always the rule, though, even before our kids were transplanted. We require hand-washing when you come in the house, and when you've gone to the bathroom. What's so weird about that?<br />
It really offends me when people make comments that I didn't fight for my kids' lives and get them their transplants just so I could put them in a bubble and not let them live life. It makes me very angry, in fact. I know I shouldn't take it to heart, and I should just blow it off, but sometimes it's hard. I don't think people realize when they make comments like that, they are basically saying "Hey, you suck as a mom." It's totally true that we didn't go through what we did to live a life less than full. The girls' limitations post-transplant are actually less than pre-transplant. Before they had new hearts, the girls wouldn't have even been allowed to play sports or do gymnastics. Now they can. There are just different rules. Most of them involving vaccination and food safety. All of them involving common sense.<br />
Let's be real, here: there are a lot of germs in the world. I know that my kids are going to get sick. It's inevitable, especially with Madi now in school. I know that some exposure to dirt and germs is necessary to build a stronger immune system in anyone. <br />
Contrary to popular belief, I don't sit in a corner, rocking and sucking my thumb, afraid of the world and all the stuff that's "out to get" my kids. My kids probably get to do more things than I did as a kid. Just because they aren't in weekly swimming, tennis, or needlepoint lessons doesn't mean that they are missing something in their lives. Madi and Sydney are homebodies. They'd prefer to be at home and watch movies, color pictures, or play with trucks than be out running around. Maybe because they have both spent so much time cooped up in hospital rooms and doctor's offices, they simply enjoy the comforts of home. That's totally fine by me. I don't believe that the amount of places a child has been or the number of activities on their daily schedule determines whether they have a good childhood. If any family knows how to live life to the fullest, it's ours. We celebrate the mundane, everyday things that so many overlook without a second thought. I got teary-eyed when Madi put her own pants on the other day, for cryin' out loud!! <br />
So please, don't tell me that I don't ensure my kids live their lives to the fullest. The docs at Mayo think we are doing a great job, and are very thankful (as am I) that the girls continue to grow, learn, and achieve all that their hearts desire. And they manage to do it relatively healthily, at that. So no, you probably won't run into my kids in the busy shopping mall in the middle of December. Who likes shopping with their little ones anyway?!? And chances are you won't see us at Chuck E Cheese anytime soon. But don't tell me that my kids don't live their lives to the fullest. <br />
Their every breath is evidence to the contrary.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com1tag:blogger.com,1999:blog-6448145315740833521.post-31666085123792419152012-12-10T12:12:00.001-06:002012-12-10T12:12:45.629-06:00The 12 Days of Christmas: CHD VersionI haven't blogged in over a month. Not because I haven't wanted to, but because it seems like sickness keeps rounding through my household. We are still battling germs of some form around here today, but over the weekend we had a beautiful snowstorm that dropped over a foot of snow at our house. It really put me in the Christmas mood, and we have been listening to Christmas carols. Then it hit me. The perfect blog post for today. It took just minutes to write, but I know it's a part of everyday life for so many of us. <br />
I give you my very own Christmas carol,<br />
<br />
"The 12 Days of Christmas: CHD Version". By me, Linsey Rippy. <br />
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<b><span style="color: red;"><i>On the 12th day of Christmas the heart world gave to me</i></span>:</b><br />
<b><span style="color: #38761d;">12 Blood transfusions</span></b><br />
<b><span style="color: red;">11 X-rays</span></b><br />
<b><span style="color: #38761d;">10 Dressing changes</span></b><br />
<b><span style="color: red;">9 EKGs</span></b><br />
<b><span style="color: #38761d;">8 O.R. hours</span></b><br />
<b><span style="color: red;">7 Echos scanning</span></b><br />
<b><span style="color: #38761d;">6 IVs dripping</span></b><br />
<b><span style="color: red;">5 Vitals checks</span></b><br />
<b><span style="color: #38761d;">4 Chest tubes</span></b><br />
<b><span style="color: red;">3 Diuretics</span></b><br />
<b><span style="color: #38761d;">2 PICC ports</span></b><br />
<b><span style="color: red;">and a tired but very blessed soul!</span></b><br />
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This Christmas, I am forever grateful for the donor families and the brilliant medical teams that have kept my children alive. I am also remembering those that will be spending Christmas in Heaven, and praying for peace and love for their families. <br />
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<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-64862687420994146422012-11-07T13:24:00.002-06:002012-11-07T13:26:06.719-06:00AmericaAmerica. The land of the free and the home of the <strike>brave</strike> cowardly.<br />
It's day one of the post-election season and I have been attacked left and right for my choices. I proudly supported President Obama in this election, much like four years ago. That's my choice, a freedom that people died to achieve for me. I don't take it lightly. For some reason, though, some folks have it in their heads that being an American means treating people who don't think the same way they do as trash. It disgusts me.<br />
I have heard comments wishing that the Mayans will be right, and the world will end in December. That people are ashamed to be American. That the baby-killers are applauding. All because of who is our President. Sad, isn't it? No one is forcing anyone to stay in this country. If people are so ashamed to be American, or think they'd rather die than live here in this democracy, I invite them to pack their bags and turn in their passport.<br />
Our country has lost sight of what it means to be an American. They don't realize how lucky we are to live in a country where we have so many choices, and where our voices are heard. Where we aren't killed because we want an education, or because we disagree with what the "powers that be" may say in our city. We have a lot of work to do, of course. That's what an evolving society is all about. If we didn't we would have a citizenship that stagnated and died. Is that what people really want? Yikes. Somewhere along the way, it's been forgotten that we need to have a community worldview. To give people a hand up (not a hand out) when they are down, and to respect and love our neighbor. We don't have to all think exactly the same way to get along. Can you imagine if the whole world had to like the same music just to get along? Or if the whole country had to be *shudder* Packers fans? Diversity is what makes America special. It's what makes us interesting. Sadly, it is also what makes us selfish. No one person is right. And no one person is wrong. What <i>is</i> wrong, however, is having an "every man for himself" attitude. I am not saying that we give handouts to people who sit on their butts. (And seriously, the next person that insinuates that I am a freeloader because I voted for Obama is going to get an earful.) I am saying that people who are willing to work, to try, to make an effort, should get their fair shot. No one in this world got where they are entirely on their own. I, for one, know without a doubt that I would be nowhere without the generosity of others, and yes, at one point in time, the welfare system. Instead of degrading people that fall into a slump, let's give them a boost. Help them to help themselves. I bet most of those that get help will turn around and lift someone else up when they are able to, and then the chain of generosity continues. It's called paying it forward, and it's something we should all ascribe to.<br />
I don't mean to say that the people who work hard for their money need to dole it out to people who don't work. I was told last night that if I was a "true, hardworking and taxpaying member of society" I would resent taxes being taken from said hard-earned money. Really? Do I like paying taxes? Of course not. I don't believe that anyone does. But those taxes pay for education, infrastructure, police and fire rescue, and so much more. If taxes didn't pay for it, who would? That's why even though I don't like to pay taxes, I know it's a necessary part of a democracy. If you reap the benefits of living in a free, democratic society, you should contribute as such. That's just common sense.<br />
Honestly, I hope that we can get back to the American values of yesteryear. When you worked hard and earned your keep, <u><b>and</b></u> helping out someone who'd fallen on times of hardship wasn't even a thought. It was just something you did, without expecting anything in return. My great-grandma grew up very poor, and had a Depression-era mindset to her very core. She used everything till it was absolutely not useable anymore, and recycled things to make other things, even cutting out dolls from empty, clean, bleach bottles and outfitting them with clothes she made from scraps in her fabric basket. If a neighbor fell sick, she'd bring them meals and bake cookies. They shared rides to church, and spent hours and hours volunteering for various organizations. She knew what it meant to be poor, and knew that since she was doing alright, she should pay it forward to others that weren't. This is the attitude I hope to instill in my children. Rich or poor, white, black, purple polka-dotted, gay, straight, man, woman, old, young, fat, skinny: We are ALL Americans. We should all be thankful. And if someone isn't, let me repeat:<br />
Go somewhere else!<br />
<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-9209290755875689542012-10-30T22:37:00.000-05:002012-10-30T22:37:12.486-05:00Are you someone's "yes"?Have you ever stood by your child's bedside, watching their chest rise and fall, knowing that without the tube down her throat, it wouldn't be moving at all?<br />
I have.<br />
Have you listened to the beep, beep, beep of a heart monitor, fists clenched tight and on the edge of your seat, hoping it doesn't alarm again?<br />I have.<br />
Or watched your child's blood being spun through an oxygenator hooked up to a network of tubes and a machine that's bigger than your own body, spinning it back to their body because their organs are unable to do it for themselves?<br />
I have.<br />
Have you ever jumped up every time the phone rings or a doctor walks into the room, hoping that this time, it's the news you've been waiting for? That an organ has finally become available to save your child's life?<br />
I have.<br />
Or spoken with a neurologist about the brain damage that the bouts of CPR performed on your baby's tiny body have caused?<br />
Yep, done that too.<br />
Twice.<br />
<br />
And I am not the only one.<br />
All over the world, people are waiting for an organ transplant to save their life. It could be you. It could be your siblings, your spouse, your best friend, or, like me, your children. That's no typo there. I meant to say children. As in plural. As in both of my daughters.<br />
I have wrestled with the grief that praying for a heart for my daughter brings. The thought that I am in some way hoping for someone's loved one to die. I felt that way for a very long time, until a loving and wise cardiologist pointed out something very true to me. He took me aside and said "You have to stop kicking yourself. This is not your fault. You are NOT wishing for someone to die. You are simply hoping that they will make a brave and unselfish decision in their own time of grief and desperation." Luckily, a family in South Carolina said "Yes" to organ donation, and saved my Madi's life. A family in Texas said "Yes" to saving Sydney. <br />
<br />
Are YOU an organ donor? <br />
You can't take your organs to Heaven. (Or wherever you feel you may be going.)<br />
You CAN live on.<br />
You CAN be someone's "Yes".<br />
<br />
BE someone's YES. Be a donor.<br />
<br />
Click <a href="http://donatelife.net/">here</a> to register to save lives. <br />
<br />
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<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-54559557077263452902012-10-23T13:27:00.000-05:002012-10-23T13:27:08.690-05:00Change & FriendsRecently, I was told by someone I thought was a lifelong friend that I had "changed." That I was "judgmental" and "only wanted to be friends with heart moms."<br />Not only did it hurt, but it's totally not true. In fact, my very best friend, who I spend time with every week, is not a heart mom. What she is, though, is understanding.<br />
Maybe I <i>have</i> gotten a bit more cynical after what we've been through. It's hard not to. When someone complains about their money status after purposely quitting their job to get on assistance, I have a hard time listening without saying something back. (Something like "Are you INSANE?" or "This is why people like me can't get public assistance when it's really needed-because people like you are flooding the system.") No one can ever say that I am not honest, that's for sure. I surely don't have time to listen to paltry excuses. I have no patience for whining about trivial things. Does that make me a bad friend? I'd like to think that it just makes me a different one.<br />
The fact that most of my friends are heart friends isn't just coincidence. How it came to be this way is not of my design, and there's really nothing I can do about it. The truth of the matter is that lots of people cannot handle having a friend with complex kids unless they've been in their shoes, or have an enormous and understanding heart. They have to realize that we won't be attending their child's birthday party at Chuck E Cheese in the middle of a pertussis epidemic. That we can't be around them when they have "just a cold" or haven't gotten caught up on vaccines. It truly can be a matter of life and death for my kids, and no pile of tickets and plastic prizes from the arcade is more important. I do feel bad that we can't be as present as we may have been before my kids got sick. I don't enjoy holding my children back from fun activities and potential friendships. But it's a necessary evil. We live by the guidelines set for us by the transplant team, and that's the way it has to be. Sadly, a lot of my former friends didn't have the patience for that. I can see where they'd get frustrated. I admit that I am a terrible phone-call-returner. If you spent as much time as I do on the phone (mostly with insurance companies) I bet you'd loathe it too. I also admit that it probably is hard to deal with the constant denials of invitations sent to my family. It would probably frustrate me too. And so my friends, one by one, have slowly faded from my life. <br />
I don't expect people to "understand" transplant life completely. Even my parents don't totally get it, because they don't live it in the capacity that we do. I just wish that more people would take the opportunity to learn, or even to ask, and truly care, about why we have to do what we do. Or why Madi & Sydney can't do such-and-such activity.<br />
In the end it's their choice, and I try my hardest not to be angry. Let's be real here, though: it really does cut deep. People you thought would walk with you your whole life gone in a flash. Worse than that is when they tell you that you are the one that's selfish, that you have destroyed the friendship. <i>That</i> really stings. It also infuriates me to the core.<br />
So yeah, I guess I have changed. I have had no choice. My life is nowhere near where I thought it would be at this stage of the game. But it's ok. We've made the best damn pitcher of lemonade you ever had out of our loads of lemons that life's thrown at us. You only have to visit with the girls for a few minutes to see that they truly are miracles, and that every restriction is worth it to hear them sing, watch them play and feel their warm hugs. <br />Through it all, I have learned many important lessons. The one that I've taken away from this about friendship is: Friends are the family you choose. My family of friends is great. And if it took me changing to get them in my life, well then it's worth it.<br />
Sometimes, change is good.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com2tag:blogger.com,1999:blog-6448145315740833521.post-60932504912997302732012-10-17T13:27:00.001-05:002012-10-17T13:27:14.063-05:00Easing the sorrow with loveThis week has been a particularly rough one in my little Facebook CHD corner.<br />
Just in the past three days, 4 heart kids (that I know of personally) have gone to be with Jesus, and it breaks my heart in a million pieces to think about what these families are going through.<br />
Unfortunately, it's all too common in the heart world, but it doesn't make it any easier to stomach the loss of these precious children. I feel compelled to just DO something. Something tangible. Something meaningful. Something <i>more</i>. And then it hit me-there is something I can do that will be meaningful to someone I happen to know and care about very much. And you can help. It won't take away the sorrow that fills the heart community, but it can help one family realize that there still are caring & loving people in the world, and that their son will never be forgotten.<br />
My friend Michelle lost her son Nathan in January due to complications following his 4th open heart surgery. (Read about sweet Natey <a href="http://crazybeautifulrippys.blogspot.com/2012/02/faces-of-chd-part-ten-nathan.html">here</a>) We live in Minnesota, which some of you know as "land of tundra", and his gravestone still is not set. Due to the extreme climate changes, the cemetery in which Nathan is buried has very specific guidelines when it comes to headstones, which end up raising the cost significantly. The family, who has tapped out every resource possible just trying to pay medical bills and provide for their two kids who are still with us, needs our help! They'd like to get Nathan's headstone engraved and set before winter sets in. I know, blog readers, that you are generous and kind people. I know that you have love in your hearts. I also know that most of you have not had to experience the loss of a child. Myself included. I cannot even imagine what that's like, nor do I want to. So what do you say? Can we help this family? I think we can do it. Please follow the secure link below to contribute what you can. Every single dollar helps. Please think about what you would do if you were in this situation-and I sincerely hope you never ever have to be. This world would be a much better place if we were all a tiny bit more helpful. <br />Can you skip your Starbucks for the day? For the week? I know I can. <br />
<a href="http://www.gofundme.com/12egdg">Click here to help!</a><br />
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<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-78700468349444827202012-10-01T22:18:00.000-05:002012-10-01T22:19:12.243-05:00Guilty pleasures-we all have em. Mine? These guys.<br />
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Yep. Duck Dynasty on A&E is, hands down, my number one guilty pleasure. Why? Who knows. Maybe it's their common-man-makes-millions story. Maybe it's the rantings of Si, the lovable uncle who seems to have, to put it kindly, "lasting effects" from Vietnam.</div>
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But probably the biggest reason I love this show is because of their family dynamic. They may pick on each other, and drive each other crazy. But at the end of the day, they are always there for each other. Through thick and thin, they are family. Period. And nothing gets in the way of that. They still believe in sitting down to have a family dinner, and they start that dinner every time with thanks to God for their numerous blessings. That, my friends, is good TV. Don't judge.</div>
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<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-20361407054227592832012-09-23T20:15:00.000-05:002012-09-23T20:19:50.938-05:00"She had a transplant, she's fixed, right?"It's a common misconception that when someone gets a heart transplant they are "fixed." I can definitely see how people would think that, but it's simply not true. Yes, a heart transplant can allow a person to have a much better life. It can make it so that they finally feel better, can climb stairs, run & play, or just <i>live</i>. <b>Heart transplants save lives</b>. But it's not an easy road, that's for sure. Here, I'd like to shed some light on what it's like to live in the transplant world. It's my hope that I can help others understand why there are some areas in my girls' lives that are very very different than their childrens' lives. And also why it's so important to really adhere to what some may call my "paranoia" about the things we can and cannot do.<br />
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First things first: a heart transplant (or any other organ transplant) is trading one disease state for another. Any organ transplanted into a body is perceived as a foreign object by the recipient's immune system. In order to (hopefully) prevent rejection, there must be immuno-suppressive medications on board at all times. These drugs, while they help so that the organ doesn't reject, do a lot of damage to the body's other organ systems, and also set the recipient up for any type of infection that is around them. They become very susceptible to germs, cannot have live vaccinations, and are at an extremely high risk for developing cancer. In the case of my children, these medications also cause their white blood cell counts to be off, blood pressure to be high, kidney function to be diminished (most heart transplant patients will end up needing a kidney someday), appetite suppressed, and hemoglobin to be low. They cause excessive hair growth, skin issues, gum overgrowth, and a myriad of other scary side effects that I won't even go into right now. So there are other medications added to their drug regimen to combat all the issues that the immuno-suppressant drugs cause. Being on these meds is just another situation of "the lesser of two evils".. the alternative, of course, being that the person is no longer alive.<br />
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Another common myth: once you are transplanted, that organ will last forever. False. Most heart transplants last around 10-ish years. Now this is just an average. Plenty of people live 20 years without needing a new heart, and others will need another one two years out. For some reason, transplanted hearts very easily succumb to Coronary Artery Disease, and must then be re-transplanted. Of course, they are working on getting to the bottom of this mystery, and I so hope that my children won't face a re-transplant, but chances are they will. And I don't even want to think about the possibility of having to do a kidney transplant, too, like I mentioned above. So I don't.<br />
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Germs, germs everywhere. Did you know that there are fungi that live on rosebushes (and other plants) that could kill someone with a weakened immune system? Yeah, neither did I till I had two kid with transplants. Or how about birds and reptiles-full of salmonella and other unmentionable creepy-crawlies. Public pools? *Shudder* Not for my kids-I'd be better off letting them swim in the toilet. School, of course, is a necessary evil. But the thought of all those un-vaccinated kids with runny noses, chicken pox, whooping cough, etc. is enough to make me want to run for the hills and home-school my kids, Duggar style. But being as I have zero patience to teach a special-needs kindergartener, and I want my kids to have a meaningful education, I suck it up and send them to school. With hand sanitizer. And a bubble wrap suit. Just kidding. (Wouldn't that be cool, though?!?! Ha ha.)<br />
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Constant monitoring and doctor's visits. When was the last time you had to bring <u>your</u> 6-year-old to have a bone scan? What's <u>your</u> three-year-old's resting blood pressure? How's <u>your</u> daughter's fluid status today? Don't know? To all of the above, I say: been there, done that. Every single organ system is monitored in a transplant patient. Most heart transplant patients even have to have heart catheters done frequently, where they are put under anesthesia and a catheter is threaded through the groin up into the heart to study heart pressures, the state of the coronary arteries, heart function and the like. Sometimes they take biopsies. Many, many children who have heart problems and/or transplants are developmentally delayed or disabled, which brings speech clinicians, special education teachers, occupational and physical therapists to the table. My 6-year-old could direct you around the Mayo Clinic. It's just a fact of life for us.<br />
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<b><i>Still think transplant's a permanent fix?</i></b><br />
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In no way do I mean to gripe and groan about transplantation. If not for transplants, and organ donors, neither of my children would be alive today. I am a tireless advocate for organ donation. I will never rest. We are absolutely and totally blessed with our two beautiful girls. They are miracles, and testaments to why organ donation is a wonderful, fantastic and magical thing. It's just that it's not an easy road to travel. Is it worth it? You bet. I'd choose the same road again and again if it meant that I can have my kids here to drive me crazy till I am an old, senile woman. They are both doing extraordinarily well. They live their lives as normally as possible, and that's what matters. They'll never be the same as their peers. We have basically fought for every single aspect of everyday living that most take for granted. That's ok, though, because it has made us open our eyes to the blessings that surround us. We really have stopped to smell the roses. We just don't touch them. Fungus on the rosebushes, ya know.<br />
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<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com3tag:blogger.com,1999:blog-6448145315740833521.post-12017517118630121192012-09-21T12:11:00.000-05:002012-09-21T12:11:41.135-05:00The upside of being a Heart MomYeah, I know. You are probably looking at the title of this post and thinking "Is she out of her mind?!?!" Well, yes, but that's beside the point. There really is an upside to being a heart mom. Allow me to explain..<br />
While I would love to have never had the need to even stick my toe over the line into the heart world, here I am. There's no going back from it, so I may as well seek out that ever-elusive silver lining to this cloud, right?<br />
When you become a heart mom, you are thrown into what I like to call a swirling vortex of terror. It's like getting the proverbial rug pulled out from under you, in the middle of a rainstorm, while being struck by lightning. More than once. When you get the chance to breathe again, it's like this sixth sense kicks in that you weren't even aware you had. The need to search out others like you. To find out all that you can about what's wrong with your child, and how you can go about "fixing" it. (And once you've been in the heart world for longer than five minutes, you quickly learn there's no fixing things, just dealing with it.)<br />
If you're lucky, like me, you stumble upon a community of heart moms. It's like they have radar: "There's a new one of us out there, we must go support her!" These heart moms swing into full force. They coordinate meals, bring care packages, send cards, start prayer chains, and swoop in with every bit of advice that they have. They let you cry and whine, play the "why me" game, and then help you to suck it up and move forward. They sit with you while your child is in their umpteenth surgery, even if you don't want to talk at all. They get coffee, hold your hand, and pick you up when you crumple to the floor in fear. And if they can't get you to get up, well then they just plunk right down with you. When you have a long hospital stay, they rally the troops to fundraise for your family, offer to watch your other children, walk your dog, feed your cat. They bring you chapstick, lotion, gas cards and hugs. They flood your Facebook wall with well-wishes, prayers and love.<br />
Even if you've never met these people in person, they become your family. They speak your language-one of caths, ejection fraction, Lasix, chest tubes and Heparin. Talking with them is a relief, because they get it. Without long, drawn-out explanations, they just get it.<br />
The strongest people I have ever known-ever-are the heart moms that have lost their children. Even in the midst of their grief, which will never go away, they celebrate every triumph with you. When your child gets out of the hospital, they are the first to send a text, or drop off a meal. It amazes me. My children are my heroes, but the heart moms I know and love are a close second to that.<br />
No matter the time, the situation, the place, I know that I can count on them. I hope they know that I am more than happy to return the favor.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-91116635602074263222012-08-31T13:49:00.000-05:002012-08-31T13:53:01.323-05:00Blogs and junk food: the new psychologist?In the name of full disclosure, I am warning you all right now that this is going to be a whiny post. I am in one of "those" moods today, and I need to get it out. Writing has always been my therapy, and now that I have a blog, you all get to see inside my mind. Aren't you lucky?<br />
Today, I am tired. Bone-weary, exhausted, worn out, drained. I have been feeling lately that I cannot catch a break. I know, in that oft-hiding logical part of my brain, that I am indeed very lucky. But today my emotional levee has broken, and out comes the flood of frustration.<br />
You know that old saying about the straw that broke the camel's back? Just about 20 minutes ago, that happened to me. The ridiculous part is that said straw is something miniscule, something that (hopefully!) will be easily fixed. It was just the final insult my brain can take this week.<br />
On top of the usual financial woes and the rollercoaster ride we call parenting, this week has been particularly crazy. Madi has been off-the-wall hyper and disobedient. To be fair, she has been cooped up much of the summer, as the weather has not been nice enough for her to be outside. I think she's ready for school. And frankly, so am I. For her to be in school, that is. If we finally get everything all squared away for her to go, anyway. Yes, my child was the only one forgotten when doing up the transportation for this year. And it was just noticed on Wednesday at the open house, leaving no time whatsoever to get it fixed in time for the first day on Tuesday. Why they need a few weeks' notice, I don't know, but I was not in the right frame of mind to be asking questions. There were what seemed like gazillions of children running rampant in the school that night. A school with no air conditioning, and all the parents and children and staff all together equals chaos. Hot, sticky, sweaty, chaos. So I left my contact information with a promise of a follow-up phone call the next day. I got that, from Madi's case manager. She's very very nice and I know none of this is her fault. Quite frankly I feel bad for her too. I am sure the woman doesn't get paid nearly what she's worth and she has to deal with transportation snafus too? Yeesh. So I call to check in today and they told me that somewhere along the line the ball was dropped (DUH!) and that they hope to have it all squared away next week.<br />
Normally, such a situation would not bother me so much. But it's seeming more and more lately like I can't get anything done in a straightforward manner. My brain is crying from all the fixing it has had to do lately.<br />
And then the family drama.. oy vey.. we won't go there but let's just say that my very large family has dwindled to very few. By their own choice-since they think I am the devil for standing up for what I believe in. Leaving me feeling somewhat alone and support-less as compared to where things used to be. But that's another mess of its own that doesn't deserve my brainpower at the moment.<br />
So yes. I am whining. And I am having a pity party for myself. I am, at the moment, one of those "Why can't anything go easily for me" people. Now I never said that I liked to be that kind of a person but let's face it, people: sometimes we all need to pout and grumble.<br />
I have a plan in place, though. Tomorrow, I am going with my best friend to the state fair. I plan to drown my sorrows in plenty of fried foods-on-a-stick. Calories be damned! Between my blog vent here, and the overload of junk food tomorrow, I am going to be just fine.<br />
I can smell the cheese curds now. Smells like therapy.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-21118730041685343842012-08-28T13:02:00.000-05:002012-08-28T13:02:03.809-05:00The Dream TeamBetween Madi's hospital stay post-transplant and Sydney's hospital stay post-transplant, I imagine that I have spent enough time in the Cardiac ICU at Mayo to call myself something of an expert.<br />
What does that even mean, you say?<br />
Well, for one, I know where the best places for phone reception are. What times the echo techs generally come around. When the teams do their morning rounds. Where the "treasure chest" is located. My feet have worn a path around the unit from days of pushing strollers or pulling wagons in endless loops, hoping to soothe an irritable child.<br />
I hear about other hospital programs, and consider our family very lucky to have been guided to the Mayo system when we started our whole journey. A Cardiac ICU is not a fun place for a family to be, but if you have to be there, you may as well make the best of it. I so wish that all healthcare systems worked the way Mayo does. Every morning, when rounds take place, you are reminded over and over that these people really care for your child. As you stand there and listen to the daily pow-wow between cardiology, neurology, hematology, pharmacy, dietary, occupational therapy, physical therapy, and the intensivist, you know without a doubt that your child is getting the best care possible. Each and every day, all of the members of your care team meet and discuss your child. They make adjustments to their care plan as needed, and make sure that everyone's on board with all decisions made. It's like having a care conference daily, and it's unbelievably reassuring. As a parent, the fact that I was always included was a big deal too. It made me feel like my input was always important as well. They validated my feelings and concerns and made sure to help me in any way that they could. When you have a child that's been through what my children have been through, the security that brings is immeasurable. When you have team-based care, the mistakes are few and far between (and in my case, for both of my children, there were no mistakes made whatsoever) because nothing is done without everyone else's knowledge. <br />
And the nurses! Oh, what can I say to convey to you how great they are? Besides taking the very best care of my kids that they could, they all truly made me feel like they cared about our family as a whole. It warms my heart still to think of the special people who took my girls under their wings. There were times when I'd pop by the unit on my way to lunch or something, and see a nurse sitting with Sydney reading her a book, or singing to her. At night, when Sydney was restless and unable to sleep, they'd gather her into their lap and rock, positioning all of her monitors so they could see them while Sydney watched Toy Story for the bazillionth time. Every morning when I came to the room, she'd be freshly bathed, with a pretty bow in her hair, lips glistening with Chap-Stick. (That hospital air gets dry, ya know!)<br />
When we finally left the hospital, I cried. With both girls. Tears of relief, yes. And tears of joy that we'd made it this far. Of course I was terrified, too, to be taking care of these newly-transplanted kids on my own. But you know what's funny? A great part of those tears were because I was going to miss the people that I saw every day in that ICU. So weird, I know. When your child is hospitalized all you can think about is getting them well enough to leave. And then when the time comes, you almost don't want to leave. Almost. It's like saying goodbye to your family members.<br />
To this day, if we have time, we stop up to "the unit" when we have the girls in town for their checkups. The girls are always the stars, and everyone peeks out of their rooms if they can to say hi. It's so nice to know that even if we aren't inpatient anymore, Madi & Sydney have touched their lives somehow. I'm glad the girls can do that. I think they were both put on this Earth to make a great impact. With a dream team like the one they have at Mayo, they are well on their way to a long and successful life.<br />
<br />Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-25902330675108929132012-08-21T22:23:00.002-05:002012-08-21T22:23:41.962-05:00Sometimes...Sometimes, if only for a minute, I forget that I am a heart mom.<br />
Then reality wakes me up, and it all comes flooding back. <br />
Sometimes, I get downright angry. Why does my experience with motherhood have to include things like syringes and dosing information, sutures and heart function? I see people's Facebook posts in which their children do things like ride their bike, write their name, or tie their shoes for the first time-at the age it's considered developmentally "normal" to do so. I hear someone's three-year-old speaking full, clear sentences and watch their six-year-old pick up a chapter book and go to town. I get mad (and let's be honest here-I get really sad, too) that things that "should" be simple for any child are not simple for either of mine. I fume at their struggles, curse the medications that make my kids throw up or not want to eat, and seriously consider hurling my home blood pressure monitor and stethoscope across the room. <br />
People tell me they don't know how I do it. Well, join the club. I don't know how I do it either. Perhaps the easiest way to respond to that is that #1-I really don't have a choice and #2-I guess I don't know anything different. Maybe that makes it a bit easier. I don't know, because both of my kids have walked eerily similar paths that don't even come close to what I once imagined parenthood entailed. Maybe that question should be posed to people like my friend C, whose heart "baby" is not her first child. Or her second. I think that woman deserves a medal. Raising five children, on her own, the youngest of whom is a heart kiddo. How does <i>she</i> do it? I imagine, though, that her answer would be very similar to what I have said more than once to that statement: What else can you do but pick yourself up and go on?<br />
So when I start having a pity party at the sink as I am washing the latest batch of syringes, I try my best to remember this: my children are the lucky ones. So they aren't potty trained. So what. So they have to take meds every day. Yeah, that sucks. But you know what? They're here. I know for a fact that there are many heart parents that don't get to hug their children, or read them a bedtime story. Heart problems kill more children every year than all cancers combined. We have stared the beast in the face and managed to come out the other side-at the moment. Something that cannot be said for every family that's walked this road.<br />
Come to think of it, I love washing syringes.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com2tag:blogger.com,1999:blog-6448145315740833521.post-77471677364918312922012-07-18T10:12:00.001-05:002012-07-18T10:12:20.698-05:00Love thy neighbor...I am a baptized Catholic. I believe in God, and pray to Him frequently. I think God and I have gotten to a much better place in the past few years, even though my faith has been shaken more than once.<br />
But does being a Catholic mean I have to be judgmental? I don't think so.<br />
You see, I am a gay rights/gay marriage supporter. There are several people in my life that I love who are gay, and they are wonderful people who just want to be able to have a committed relationship in the eyes of the law. For their children to be able to say "YES, my parents are married."<br />
It's a big deal. <br />
I know this could potentially cause debates, and quite possibly make people feel resentful of me, but guess what? My blog, my thoughts. And I could honestly care less what others say on this subject, cause to me no matter what people say to try to convince me otherwise, I will stay true to what I believe.<br />
Jesus died for ALL of us. He loves ALL of us. Heterosexual or homosexual, the Lord made you that way. Period. He also gave us the ability to think. To make choices. Hate is a choice. Judgment? Also a choice. Who you love? Not so much. (If you could choose who you did or didn't have feelings for, we would all have a lot less baggage. I mean, c'mon, who hasn't loved the totally wrong person at some point in their life?)<br />
I hope to raise my children within an environment of love and acceptance. I think the most important lesson that I could ever teach them is to love one another. To be blind to color, religion, sexual preference, or what the world says your IQ is. Why do we all have to be classified into little groups like Lego sets? Together, we can be a stronger world. But we have to do it as one.<br />
I'm not naive. I know that the citizens of Earth (or even just America, for that matter) will never join hands and be unified-that whole "We Are The World" mentality just isn't gonna happen. In my house, though, we will be about love. Jesus said "Come as you are" and that's what it's about in my home. <br />
Who am I to pass judgment? To me, that's a direct insult to the work of the Lord. He made us all in just the way He wanted-and I, personally, am not about to say "You know what? You're wrong. This guy (or girl)? Not worthy of my love. Or yours." <br />
God's welcome mat is always out. Why shouldn't mine be, too?Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-38390289682995725892012-07-01T19:37:00.003-05:002012-07-01T19:37:44.963-05:00NeighborsYou know, there used to be a time when neighbors knew each other. Had cookouts together, chatted over the back fence every day, and fed half the neighborhood with each meal. Now neighbors don't even know each other at all. An entire town would come together to help people raise a barn, side a house, or build a deck. It was all about community, about loving thy neighbor as thyself. About reaching out a hand to those that needed it, without expecting a thing in return. There wasn't the "me me me" mindset that we see so often today.<br />
The recent healthcare reform debate has brought this mentality into sharp focus. I cannot even tell you the number of times I have heard the phrase "Why should <i>I</i> have to pay for someone else?" in the past month or so. It's true with the healthcare reform, with taxes, with school levies. "Why me?" Well, why<u> not</u> you? Why not reach out to those that are a little less fortunate than you, in the hopes that we can make America a better place? Why don't more people volunteer? Donate blood? Vote "yes" in school levies to help with the budget?<br />
Because the common way of thinking is "Well why should <i>I</i> have to do it?" Lord knows when you yourself might need a meal provided for you, or health insurance that's guaranteed to cover your sick relative who could never afford his medication or chemotherapy or surgery or what have you without it. People who'd literally die without insurance. We are not promised tomorrow. We do not know what's just around the bend, and it could just be you that needs those pints of blood. It could be YOUR kids in a school that has to use old textbooks because yet another levy didn't pass.<br />
The people of America need to come together. We have heard it all our lives: "UNITED we stand, divided we FALL." Yet so many don't live by this very simple principle. Rich people are not guaranteed riches for life. Insurance may run out. You could lose your job. Get cancer. Need an operation. Then <i>you</i> will need someone. Perhaps many someones. It's unfortunate that so many do not give without thinking about what they will get in return. We need to live with a community worldview. Your neighbor may not have the same color skin or even speak the same language, but at the end of the day we are all human beings. We deserve to have the love and support of our fellow neighbors, even if we don't need it right at that moment.<br />
We shouldn't have to choose between groceries and medication. <br />
I support the healthcare reform bill. It's not perfect. No bill is. But it will help so many many people that need it the very most. Including my two beautiful little ladies with zippers on their chests.<br />
Complain about America all you want. Gripe about the president, and how he has "done nothing"-a debate I will not even try to opine on here, because it would take days. If you don't like it here in America, well, you know how to leave. Maybe you will find better neighbors somewhere else. But only if you learn to be a better neighbor first.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-49267820950506162942012-06-16T00:05:00.003-05:002012-06-16T00:07:15.509-05:00TestimonialI became a mother knowing that it was never going to be a walk in the park. That I would have moments that would make me want to scream, cry, or run away. Maybe even throw up. I knew I would have to "put on my big girl pants" and deal with it, just as my mom and many others have for all of time. That doesn't mean it was always easy, nor does it mean that I always dealt with things so well.<br />
For instance, when Madi was just a little person, (well, littler than she is now) when she would throw up I could not handle it. Could. Not. So Noel was the one that was on puke patrol while I was sitting in another room trying not to lose my own lunch. Luckily, in those first years, she didn't get sick very often and I rarely had to deal with those types of things.<br />
Then came the big heart stuff.. the strokes, the ambulance rides, the endless tests and blood draws. The cardiac lingo kind of slipped under the rug for awhile, and I feel as though the only reason I survived those initial days after Madi was diagnosed with dilated cardiomyopathy was because I was totally and completely numb. Shut down. I honestly can't recall most of those early days, and that's just fine by me.<br />
When Madi had her transplant, I cried rivers of tears. In her room when we got to see her for the first time post-surgery, I almost passed out.<br />
Then, Sydney got diagnosed. And when the doctor spoke the words "Sydney's echo is not normal", I left the room. It was the only thing I could do. I went into the bathroom and laid there, angry at the world (and God), and overcome with nausea and dizziness.<br />
I used to think that I was a big sissy when it came to motherhood. When people would say that I was strong, I brushed it off like it wasn't a big deal. Because, really, what choice did I have? It's not like I would have ever even thought to give up and walk away-not when I knew that my kids had it in them to fight. To live and be happy. When you are a parent, you bear the burdens asked of you for your child. You fight demons, slay dragons, ask questions, give medicine, and chase monsters from the closets. Isn't that what we all do?<br />
But today I was told something that made me think twice about my assumptions. Today, Sydney's cardiologist-a world class cardiologist in the top 1% of his field in the nation-said to me "I think you will have a special place in Heaven; probably at the right hand of the big man Himself." He then turned to the intern that was in the room and said "She just keeps bubbling right along!" and nodded to me. In that moment, I realized something. I will try not to brush off those comments anymore. I have earned every emotional battle scar I have.<br />
I AM strong. <br />
I AM a good mom.<br />
I CAN do this.<br />
I WILL do this.<br />
Today, I left Sydney's appointment with a renewed belief in myself. All it takes are some kind words to change a person's day around, and this afternoon, I was in need of a pick-me-up.<br />
Honestly, Dr. Driscoll's words were probably the nicest thing someone's said to me in a very long time, if ever. They couldn't have come at a better time. It's like God was speaking to me through the doctor, and telling me that even though I have my moments, I've totally got this. Talk about empowering.Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0tag:blogger.com,1999:blog-6448145315740833521.post-28802351086415511852012-06-13T18:58:00.001-05:002012-06-13T18:58:22.774-05:00Daddies & DaughtersIt's been said many a time that a father is a daughter's very first love. I myself have a great dad, and though we have had our moments, I can truly say that there really is a special bond between daddies and their daughters.<br />
I don't know why it is, but sometimes dads are just easier to get along with. (Though you can bet your butt that when I am sick, to this day, I still want my mom!) In my case, I think it had something to do with the roles in our family. My dad worked outside of the house, oftentimes putting in 60 hours a week or more. My mom was the consummate stay at home mom who did it all-and the primary disciplinarian. I think that made the scales tip a little more in Dad's favor-he got to be the "fun one" a lot more than Mom did. (Sorry, Mom!)<br />
I see it more and more with my own daughters. When I am gone for the day and my husband is home with his girls, anything goes. It can be two in the afternoon, and they are still in their pjs, hair untouched by any comb or barrette, bellies full of Pop-Tarts, Funyuns, and cookies. Daddy is the one that turns on the Wii and plays RockBand, to their delight. (He says it's for them, but we all know he really wants to play too.) He can also be easily swayed into getting Culver's for dinner, followed up with a yummy ice cream creation from ColdStone. <br />
I would be wrong if I said that this wasn't head-shakingly frustrating at times. I find myself thinking 'Hey, I get you dressed and do your hair and find educational activities and try to feed you balanced meals and, and, and..' But the girls love every minute of it, of course. And I do think that Madi, at the ripe old age of 6, has started to learn the fine art of getting her way, batting her super-long eyelashes at her daddy. Which is why you will find Noel playing tea party, dressing Barbies, and painting fingernails. (He's actually quite good at that!) He is learning to do girls' hair, even if it does take him what seems like an eon to put Madi's hair in a ponytail. He knows the names of all the Disney princesses, and can probably sing along with any of their movies. Noel's world is one of sparkly pink things, clouds of glitter, and plastic high heels. <br />
They say that when a girl marries, she looks to find someone that is like her dad. My dad and Noel are a lot alike, but in many ways are very different. I don't think my dad would have been caught dead in a tutu, something I have seen Noel do more than once. (Now, if his <i>granddaughter</i> asked him to, that might be a different story.) I would never have asked him to paint my nails-he wouldn't have known what to do with himself. We did, however, sculpt many an awesome Play-Doh creation together, and don't even get me started on our puzzle-building skills. <br />
My dad had two sons after I was born, so he got his fair share of all things boy. Noel, though, won't get that chance, as our two daughters are it for us. Luckily, Madi & Sydney also enjoy baseball, monster trucks, rock music, dirt, and all the stereotypical boy things too, even though they prefer frills and lace.<br />
Good thing Noel wears it well.<br />
<br />
<i>The father of a daughter is nothing but a high-class hostage. A father
turns a stony face to his sons, berates them, shakes his antlers, paws
the ground, snorts, runs them off into the underbrush, but when his
daughter puts her arm over his shoulder and says, "Daddy, I need to ask
you something," he is a pat of butter in a hot frying pan.<br />
~ Garrison Keillor</i>Linseyhttp://www.blogger.com/profile/13236524773303024707noreply@blogger.com0