Sunday, July 31, 2011

My Friends..

You know what?  I have some AWESOME friends.
They may not be the friends I had before I had kids.  They may not even be the same friends that were around a lot before Madi got sick.  But I have to say, they are all in my life for a reason.  And the ones that aren't anymore?  Also for a reason.
Some of them I do not even know in "real" life, but only through the world of Facebook.  And that's ok.  Because honestly, these people are there for me by the dozens, and I do not know where I would be without their support.  I love receiving text messages from my heart mamas, asking how Madi's eating is today, or how my kids' therapy sessions went.  I love to get pics of their kiddos, just enjoying life.  I am thrilled to share in their families' successes, and I cry with them when life gets them down.  They are there for me whenever I need-even if it's three in the morning.  And I am more than willing to return that favor.
Then there are the ones that I know in person, that are still fully present in my life through thick and thin.  It means so much to me to have people that are on my side.  To get "happy mail" from them, collaborate on CHD projects, share recipes, and meet up for lunch or the aquarium or what have you.  Having someone around that understands is priceless.  What is even more priceless to me, though, is the people that are willing to jump into this crazy life of mine knowing full well what it entails.  The friends who care enough to want to learn about the CHD world even if they are not in it.  The ones who rally for support and awareness for things that mean a lot to me.  The ones who are willing to share a plate of cheesy fries or a margarita and molten lava cake at a restaurant at 10 at night, since that's the only time I can get away.  The ones who take their own talents and use them to make things that further CHD Awareness and education.
If you are reading this right now, chances are you are one of those friends.  I hope you know how much you mean to me.  Your love, support, prayers, and laughter are immeasurably valuable to me. 
In other words, I LOVE YOU GUYS!

Sunday, July 24, 2011

Making choices

Amy Winehouse passed away yesterday at the young age of 27.  It is assumed that she died of an overdose.  When the news got out I posted that it was a shame, but I was not shocked.
Who would have ever thought it would start so much controversy?
It has come to light that in making the statement that I was not surprised that she died, apparently I am being judgmental and disrespectful to the dead and her family and friends.  That was not my intent at all.  It was mentioned that as someone who has been in the CHD world, I should know better, and I should not say things like that.
It's not the same.  Not at all.  My daughter, and the countless others who have battled a heart defect, did not choose this.  They did not ask for their vital organs to give out on them.  They did nothing that would bring on such an awful rollercoaster of medications, doctors' visits, operations, and the like.
People who drink and do drugs have a choice.  For whatever reason, they pick up the bottle/needle/pipe/pills and subject their body to poison.  Maybe it's heartless of me to say so, but I really have a hard time feeling bad for addicts.  I pray for them.  I hope they find healing.  I have cried as my own friend was laid to rest at 16 years old after a night of horrible decisions.  But I don't feel bad, per se.  I don't care what the excuse is.  What you are running from, who pressured you to do it.  There really is no reason on Earth to even start.  There are plenty of people in this world who have faced horrible, awful, dysfunctional, dangerous lives and didn't turn to substances to try to fill the void.  My husband's early childhood was terrible.  Some of the things that happened to him would make you sick to your stomach.  But he simply chose to use that as a foundation to be better than that.
Amy Winehouse was someone's daughter.  She was someone's love, someone's friend.  A phenomenally talented artist gone way too soon.  We don't know what demons she lived with, and where her mind was or was not.  But at the end of the day, she was an addict.  Just like my friend who died 11 years ago.  The hurt he left behind for so many will never go away. 
I pray that Amy is at peace now with the Lord.  That she has found solace and comfort, and is free from whatever haunted her during her short life on Earth.
But please, don't ever tell me that it's like what CHD families go through when they lose a child.  Alcoholism and drug addiction is not something you are born with.  It's something terrible.  It's sad.  It takes too many lives way too soon.  And maybe the reason why it does is so that God can relieve them of their pain in the only way that He knows will truly work.  I don't know, I am but one person and cannot delve into the reasoning of the world.  But one thing I do know for sure: when you live the drug and alcohol lifestyle to the fullest, you really can't be surprised when it comes back around on you and those you love with brutal and unforgiving force.  The saddest part is that when drugs and alcohol take over, the mind becomes too clouded to realize it. 

Thursday, July 21, 2011

Save the drama for your mama! ...Oh, wait, I AM your mama...

When a woman is pregnant, many thoughts go through her mind about the little life that is developing inside her.  We imagine what the baby will look like, how big he or she will be, and what their personalities will be like.  Often times, we are way off base.  In the case of my pregnancy "premonitions" about Sydney, though, I always knew she was going to be a bit of a firecracker.  Boy was I right.
Throughout my pregnancy, Sydney was always in motion.  I don't think she slept a wink while she was in utero..and I didn't sleep much either.  Just when I would think she had settled down for the evening, she would start her gymnastics. 
Since then, she has proven over and over that she is the go-getter.  Now that she is two years old, I am starting to see a bit more personality coming out as time goes on.  My little Sydney has turned into quite the drama queen. She is also very daring and rambunctious.  She reminds me of my little brother, Derek, now 20, who to this day is the poster child for bumps, bruises, and crazy conundrums.  Case in point: over the weekend, Sydney figured out how much fun it is to climb up and down on the couch.  Today she was on the couch and "looking" over the arm of the couch.  I told her to sit down, and she did, so I went into the kitchen to start making lunch.  Then, WHAM!  Sydney is on the floor-in the kitchen.  She stood up on the couch and pretty much vaulted over the side of the couch, bounced once on the carpet in the living room, and ended up in the kitchen.  Of course she got lots of kisses, reassurance and comfort.  After she is feeling better, what does she do?  Yep, climbs up on the couch and starts hanging over the side again.  I told her to sit down or she was going to fall again.  Oh, the drama.  Sydney let loose.  Funny thing is, she would look to make sure I was watching her before she would start wailing again. 
I am still struggling with trying to balance my time between both kids equally.  More and more these days I find that a hard goal to meet.  Madi doesn't like to share.  Not her toys, and especially not "her" Mama.  Which makes Sydney cry.  And cry.  And cry.  Sometimes, hair-pulling (Sydney pulling Madi's) and bodyslamming (Madi on Sydney) will ensue.  I become a referee. 
I cringe to think what adolescence will bring. 

Wednesday, July 13, 2011

Hopes & Dreams

As I write this, we are currently battling an as-yet-unknown "bug" in Madi's digestive system.  We are not sure whether it's some kind of infection or her body saying it doesn't like her new immunosuppressant medication.  Then again, it could be something else entirely-diarrhea "just because."  In any case, trying to figure out what's plaguing this poor kiddo's stomach has turned me into a pseudo poop scientist/lab tech.  Yes, that means exactly what you think it means... scooping "samples" from diapers, putting them in various cups and tubes, and then refrigerating or freezing them per doc's orders till the following day when they get dropped off at the lab.  I bet you are SO jealous of me right now.
But as any good parent knows, you will do anything for your child to make their owies better.  So I gag my way through, and try to think of things other than what I am doing.
One of the main things I have been thinking about lately is dreams.  As in, dreams for my children.  When Madi was born I had plenty of thoughts of all the big things she could do in life.  Then when things went down the crapper (pardon the poop talk, it's hard to get off the brain) my only dream was for her to survive.  And look at her now!  She runs, jumps, colors, and does most of the things that "normal, healthy" children do.  I know that her life will never be like others' her age, but that's really okay with me.  My dreams for Madi are a bit different now-that she can overcome her developmental disabilities and continue to learn and grow every day.  That she goes on to make lots of friends in life who respect, understand, support and appreciate her.  That she is a respectful, kind and helpful member of society.  I hope that she understands that it's okay to have a "pity party" for yourself every now and then, but also realizes that life is good, and you have to appreciate what you do have instead of lamenting what you do not.  I also hope that she uses her experience with heart disease, stroke, transplant, and developmental issues to be a source of comfort and education for others.  I certainly do not expect her to be a CHD/organ donor crusader like me, but I would honestly be thrilled to death if she chose to do so. 
Life after transplant presents a whole new Pandora's box of issues, no-no's and what ifs.  In the journey we have taken in the world of organ transplants, I have come across many instances of teens refusing to take medications, of post-surgical depression, of feeling left out because of the restrictions transplant meds make on your life.  I dream that someday medical science will acheive the goal of medications that protect from rejection without the added restrictions.  I hope that as Madi gets older she understands the importance of taking her medications and not giving in to societal pressures to drink and do drugs.  Hopefully since she has been taking medications for as long as she can probably remember, it will help in the future since it will be just a way of life for her. 
I know that I am getting ahead of myself.  That her adolescence is far away still (Thank the Lord!) and that these things should not be on my mind.  And usually they aren't.  The little bothersome anxieties and paranoias only come around every now and then, and usually only when a new situation (such as collecting poo samples) arises.  I can't help that it gets me to thinking about how different life is now.  About how so many people I know-sadly, a lot of the people I am referring to are family members-are so very ignorant about transplantation.  They seem to think that life is hunky-dorey now, and that I am being overprotective, paranoid, etc about all the things Madi can and cannot do.  To them I say that ignorance is curable.  If they only took the time to educate themselves, they would see that I am giving Madi the very best of life, in any way I can.  Because no matter how many poopy diapers I change, or how many times I get vomited on, no matter how frustrated I get with feeding issues and developmental delays, I have Madi.  Here and now, in this moment, my daughter is a bright-eyed, pink-skinned, loving, curious, sassy, sweet girl.
That, my friends, is the best dream of all.

Wednesday, July 6, 2011

Eyelashes? Seriously?

I got a new laptop!  Wa-hoo!  Best Buy decided that since my laptop has been in three  times, per their Geek Squad Black Tie Protection, they had to "junk out" my computer and get me into a new one.  Yay for accidental damage coverage! 
So as I am sitting on my laptop, checking my Facebook for the bazillionth time today (it's an addiction, I know), I saw a commercial on TV for some drug that promotes eyelash growth.  I have to say, it really ticked me off!
Why on Earth is there such a big hullaballoo about eyelashes?  I mean, honestly, if the biggest issue in your life is the fact that your eyelashes aren't long enough for your taste, you are probably doing pretty well.  I am sure there are some medical conditions and medications that do things to your hair and there's a lot of weight on people's looks.  But seriously?  With things like CHDs, Cancer, AIDS, MS, and many many other debilitating disorders out there, I can only pray that this drug was originally going to be used for something serious and the eyelash part was discovered by accident.  If not, that would make me very sad.
Ok that's it, my rant is done and over.. for now.