Wednesday, May 18, 2011

Hi, My name is "No! No! No!"

I think I should get both of my children tattooed with that sentiment.
Today has been quite the interesting day.  If any of you have been to our house, you know that the amount of toys, books, games and art supplies could easily give Toys 'R' Us a run for their money.  Well, at least that's what crosses my mind when it's 2am and I step on yet another Lego, wrenching my ankle and swearing that the kids don't need anything new.  Ever. Again.
So what have my beloved children been playing with today?  Whilst I have been on the phone most of the day trying to straighten out insurance issues & bills (I know you are jealous), my children have been busy too.  Here are the list of "playthings" we have been digging (and in some situations, I use that term literally) today:

Garbage cans & recycling bins
The dishwasher
Movie bins (dumping them out)
The bin that holds diapers, wipes, blood pressure monitor, and record book for vitals
Drawers in the kitchen that are supposedly child-locked.  So much for that idea.
Sheena, the cat.. pulling on her hair and shoving random toys in her face
Each others' heads, mainly the hair.  As in drag-you-to-the-ground hair pulling.
Movies (taking them out of cases & strewing about)
Light switches
Electrical outlets
Cupboard doors-again these have useless child-locks on them.
Closet doors.. open, shut, open, shut
Vacuum cleaner attachments
Mommy's laptop.  Didn't you know they make great platforms on which to stand?  Me either.

I am sure there are many more items to add to the list but I haven't discovered any further proof of that.  I can't count how many times today I had to take one child or the other to time out, break up some kind of squabble, or remove them from something potentially dangerous/annoying.  All this while on hold with various companies.  I wonder if there's some tape somewhere of all my disciplinary actions that was taped while I was holding.  Guess it serves them right for making me stomach that horrible Muzak, right?
Now that all my calls on my to-do list are taken care of, I am off to put a pizza in the oven and watch Monsters, Inc with the girls.  I think I deserve it just as much as they do.

Tuesday, May 17, 2011

Embracing our differences

We are all so very different.  God made us how He wanted us to be made, for only He knows the plan for our lives.  We all fight battles in our lives.  Some are big, some small, but all are important to us as individuals and even as communities. 

There's a resounding question in the parenting world about what to do when your child has a hurdle they have to surmount.  Whether it's something like Madi fights every day, Down Syndrome, learning disabilities & developmental delays, cerebral palsy, spina bifida, or any number of issues we as humans can have, it doesn't matter.  In this, as parents, we all face the same gut-wrenching question of how to handle it all.  Do we push our children to be more, to do more?  Do we just let them take the reins and follow their lead?  Pretend like they are completely "normal" (whatever normal means anyway..I don't know if there is such a thing) or make them aware of the challenges they face as a result of their specific issue?

I have gotten plenty of criticism for the road I have taken when it comes to Madi.  There have been whispers about the fact that we took so many pictures of her-some that are hard to look at.  I mean, physically & mentally painful to view.  But here's the way I see it:  why hide it?  Why shove it down and pretend that it's not there?  No, I won't do that.  To me it's doing my daughter a dishonor; almost taking her for granted.  The photos and memories serve many purposes.  They educate, showing others what children fighting heart diseases face each and every day.  They open doors for questions to be asked, and hopefully then for more of a push for funding and research.  Someday they will reaffirm to Madi what I have said all along-that she is a fighter, a warrior and a miracle.  That when you fall down 5 times, you get up 6 times.  That we never, ever gave up on her and never will.  But perhaps the most important thing they do for us as a family is to teach us all how very precious life is.  What a wonderful thing it is to be blessed with TWO beautiful daughters, and how thankful we are for that.  Though those times brought me to my knees many a time I picked myself up off the floor and fought the fight that my daughter could not fight alone.  I had so much fear and so many questions.  I was losing my confidence in God and faith.  But He was always there, by my side, ready to pick me up and carry me when I didn't think there was one single more footstep in this body of mine.  So I embrace those photos.  They are the proof that miracles DO exist. 

Madi's tiny chest bears physical scars from all that she has beaten.  Though most of the time we do not see them as they are covered by her clothing, they are there.  Why hide it?  Why make it seem like what she went through isn't important?  By trying to will it away, what message does that send?  To me it says "there's something wrong with you, so don't talk about it."  That's not the lesson I want her to take away from all this.  I want her to realize that it's ok to be different.  Every single person on Earth has their strengths, their weaknesses, their victories and defeats.  They are what makes us who we are. 

So yes, I will continue to tote my camera around.  I will be the mom on the sidelines when my girls score a goal, twirl in their tutus, ride their bikes, or sing at a school concert.  I will document their lives.  The good, the bad, and the ugly.  Because every little piece of their life is a piece of their soul, and in turn a piece of me.  I am proud of every silly, sweet, scared, whiny, laughing, crying, bratty, witty, smart, loving molecule of their bodies.  I love every freckle and every scar.  And it's my hope that they too will learn to love themselves in this way, and celebrate who they are.

In a nutshell:  God doesn't make junk!

Monday, May 16, 2011

Getting a leg up.. or even a toehold!

Frustration seems to be the mood of the day for me.
Nevermind the fact that today my father turned 50, and I have not spoken to him in about 6 months.  That's a whole 'nother story, for a whole 'nother day/blog entry.  Suffice it to say that we got into an argument about me wanting him in my life & my girls' lives more and he has not spoken to me since, citing his lack of time as one of many excuses.  Granted, I did tell him he was a crappy parent but that's how I have been feeling, and rather than try to resolve it with me (I have called, texted, emailed and even sent snail mail.. all ignored) he walked away.  Ugh. 
Ok, ok, back to my matter at hand.
First off let me say that I KNOW we are blessed, and I do KNOW that there are others out there who are way worse off than we are.  I KNOW this.  But knowing this does not kill the feelings of frustration that are bubbling up inside of me.
We are taxpayers.  We are responsible parents who do whatever we can for our kids.  Up till 2 years ago we had no negative marks on our credit report whatsoever.  None.  Which means, obviously, that prior to that time in our life we had always paid all our bills on time and had relatively little debt.  Fast forward past Madi's many hospitalizations, surgeries, the birth of Sydney, and many, MANY late paychecks and here we are.  So today I called my credit card company to see what kind of options they could give me-like lowering my interest rate so the minimum payments will be handleable (is that even a word?  I don't think so.. ) till things get better paycheck-wise.  You know what they said?  "You don't make enough money to qualify for one of our debt-relief programs."  What?  Did I hear that right?  You have to make a large amount of money to be put into a program to help relieve your debt?  Seems a bit counter-productive to me.  It's just making this whole situation into a vicious cycle that's gonna come back and bite me in the butt.   It's not like we are so buried in debt that we need to file bankruptcy.  We just need to get a leg up.. or even a toe.  I am going back to the drawing board to figure out some ways to cut costs and stretch our money further, so if you have any ideas, I am welcome to hear them.  Whilst I do that, I am gonna keep my eyes peeled for that ever-elusive money tree.  Or maybe my mom will win the Powerball.  Hey, a girl can hope, can't she?

Tuesday, May 10, 2011

Hard Decisions...

Lately there has been a lot of soul-searching going on in this heart of mine. 
It's so hard sometimes to go forward with things when you feel that you are not supported.  In the past six months, I have been pushed aside, ignored and insulted by people that I love.  It has come to pass that the things I am trying to do to further education and awareness about heart disease are being completely ignored by a lot of people in my life.  Most of them family members.  I can't tell you how much this hurts. 
It is with a very heavy heart that I have decided that our family will not be physically walking in the American Heart Association's Start! HeartWalk this year.  Team Madi still exists, and we will still be raising as much money in donations as we can.  We would be very honored if you would make a donation to Team Madi and help us "walk all over" heart disease and stroke.  Please follow the link at right to do so.  All monies raised go to fund research and education regarding heart disease and stroke.
Please do not think that this is me giving up and walking away from the causes that mean so much to me.  I simply need a break, time to regroup, and time to heal.  It pains me that people that I thought I could count on (in my family!) have absolutely no interest whatsoever in what we are doing.  It's sad, really.  But there's nothing I can do but move on.
I am choosing to set my sights on some other endeavors.  We will be collecting items for the Child Life department at Saint Mary's hospital, and as always we will still be gathering as many pop tabs for the Ronald McDonald House as we can.  We also have our 2nd blood drive in Madi's honor coming up in August, so stay tuned for further information on that!  I am very excited to be moving forward with these events, and hope that you will join us if you can.  Every little bit helps! 

Wednesday, May 4, 2011

Christopher's Story: Beating the Odds

When you are a member of the heart community, we often get bad news.  There are times when I fear what I am going to see on my Facebook newsfeed when I log in.  Too often, these parents lose their heart kiddos.  Sometimes they don't even know their child had a heart condition.  Sometimes they know of the heart condition, but don't know what caused it.
I have had the privelege of getting to know a great woman, Kristi Pena, through Facebook's community of heart moms.  Her son, Christopher Jr. (CJ), is an inspiration.  Not to mention quite the handsome little guy!
CJ is a miracle child who has fought through many hurdles in his young life.  It was recently discovered that CJ has something called Barth syndrome which caused his health problems.
The month of May has been set aside to promote awareness and increase knowledge of Barth syndrome. We would like to put a face to this syndrome. We want people to realize there is more to a boy or man affected with Barth syndrome than just a diagnosis. These are people with stories to share, enlighten and even inspire.
Here is CJ's story, as told by his mom Kristiana (Kristi) Pena:
Christopher is a sweet, outgoing, funny and adorable little boy who suffers from Barth syndrome.
You would not know he had BTHS just by looking at him, as he and the other boys compensate So well to have such a multitude of issues.
You would not know the endless appointments, specialists and therapies he must go through on a regular basis. You would not know that he must have injections several times a week to make his white blood cells produce sufficiently and be able to fight infections. He must take antibiotics everyday forever.
You would not know he takes 8 oral medicines a day to help his heart function properly.
He does have more difficulty in eating and because of this, Pediasure is there to help him get enough nutrition. A true Barth’s boy, he does love his butter, salt and eggs.
He has a lot of energy when you first observe him, but if you know him well, you know he does get tired more easily than others his age. Because of this, he sleeps longer than most at night.
We let Christopher guide us and he though he was slower at walking, talking and doing other normal physical things, he is very smart. Here is the story of Christopher:
Christopher Pena was born in April 2008 with non-compacted cardiomyopathy. Non-compacted cardiomyopathy is a very rare condition in which the heart muscle remains sponge-like after birth, which causes the heart to be very weak. Christopher's cardiomyopathy affects his right and left ventricles where it is very hard for his heart to pump and function correctly. They said the only fix was a heart transplant. At that time, we opted against.
Christopher was not given very long to live. Six months at most When he was 45 days old, he was admitted into hospice care where he remained for 15 months. Christopher was released from hospice when an echo cardiogram showed that his heart function had tripled! And at 18 months, his heart function was almost normal.
In February 2010, it was discovered that Barth Syndrome is the cause of Christopher's cardiomyopathy.
Barth syndrome is a rare, sex-linked genetic disorder of lipid metabolism that affects males. Typically, boys with Barth syndrome present with hypotonia (low muscle tone) and dilated cardiomyopathy (labored breathing, poor appetite, and/or slow weight gain) at or within the first few months after birth. Other important features of Barth syndrome include bacterial infections because of neutropenia (a reduction in the number of white blood cells called neutrophils), muscle weakness, fatigue, and short stature. Although most children with Barth syndrome manifest all of these characteristics, some have only one or two of these abnormalities and, as a result, often are given incorrect diagnoses. It is very rare, so much that if people would hold hands from one end of the world, all of the way around, only one of those people would be a boy with Barth syndrome.
There is no specific treatment for Barth syndrome, but each of the individual problems can be successfully controlled.
Barth Syndrome Foundation’s Month of May awareness campaign featuring other family stories and quotes:

Read Christopher's story in greater detail here.