Friday, April 07, 2017

Special Needs Spotlight || Matilda

In 2012, my life changed forever. I gave birth to my second child, a sweet girl named Matilda. Then began a journey full of ups and downs as we learned she was suffering from acute liver failure, was put on life support, and were told she needed a liver transplant to survive. Thankfully, she is now a vibrant 4 year with loads of personality! Her name means “mighty in battle”, and she certainly lives up to that.


Miggy: Hello Kelly and welcome! I'm so excited to be featuring you and your sweet family today. Especially your darling Matilda, as she has quite the incredible story. Let's start at the beginning shall we? Can you take me back to the day you knew something wasn't right with Matilda? Was it before birth or shortly thereafter? I know her first days and weeks were a roller coaster and probably a blur, but how would characterize your feelings those first days and weeks? Can you compare them to how you feel now?

Kelly: My pregnancy and labor with Matilda was completely normal. Heck, she even got a perfect score on her Apgar test. It was the next few days that made me ache with the worry that something wasn't right. She was lethargic, she didn't seem interested in nursing, and finally she started projective vomiting a couple hours after she nursed. When we brought her back to the hospital the last thing I would have expected was liver failure. I was in shock, heartbroken, and completely helpless.

Miggy: Matilda is a liver transplant survivor. Please educate us on what this means in terms of her health now and how this affects your and her day-to-day life.

Kelly: Matilda was six weeks old when she received her liver transplant, which came from a two week old who had passed away. Her donor liver will grow as she grows and will (fingers crossed) be hers forever. In the beginning she took somewhere around 20 doses of different medications daily, but that has dwindled down to basically just one (twice a day). The medicine she takes is an anti-rejection drug that keeps her immune system at bay so that it doesn't attack her donor liver as a foreign object. This also means that her immune system is suppressed, making it a bit easier for Matilda to get sick. But, other than that, she is just like any other child.

Miggy: What are the biggest worries you face for Matilda? On the flip side, what are your hopes and dreams for her?

Kelly: Matilda could reject her donor liver at any point and need to be put back on the waiting list, back into the hospital, back into a very risky operating room followed by a long recovery. The last thing I want for Matilda is to feel like she is fragile or incapable of accomplishing everything and anything to which she sets her mind. So, even though germs stress me out, I try my best to not let Matilda see my fear. To not let my insecurities and burdens slow her down. My biggest hope is for her to find happiness and joy in whatever she does; that she can appreciate the very gift of being alive.

Miggy: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?

Kelly: Matilda has a few toys and dolls with removable livers and one day, as she was looking for one of them to show a friend who was over, she started yelling, "Oh liver, liver, where are you?" She repeated it over and over again, until she finally came and said, "Mom, I just can't find my liver. It must be lost again." Perfectly normal conversations to us, but kind of weird to a new friend sitting down for an after school snack.

There was also the time that I carried three tote bags worth of breast milk on the subway from the hospital to the Ronald McDonald House. I don't know that anyone noticed, but it felt weird.

Miggy: I'm assuming that Matilda doesn't show any outward signs of all the stress her body has been through in her short life, but I'm also assuming there are some things that set her apart from her peers.  How can people best approach or respond to Matilda? Is there something you wish other people knew so as to avoid awkward or hurtful situations?

Kelly: Matilda has a large scar across her midsection, and a few smaller scars from other IVs and drains. My son used to call it a train track when he was younger, but now we have told both kids that it is called a scar and it doesn't come up in conversation that often. Her biggest physical difference right now are her teeth, which were stained while they were being developed by toxins that her failing liver couldn't remove. They are yellow and some are malformed.

I think it is easy to see a "normal" child like Matilda and think that her teeth issues were caused by parental neglect. I wish that people would focus more on kindness than on blame. The last thing I want are for people (kids or adults) asking Matilda why her teeth are yellow. Kids might not know better, but grownups are just expressing their curiosity at the expense of a little girl's budding self-esteem. When talking to a child, think about being in their situation, before you speak.

Miggy: One of the amazing outcomes of Matilda's journey is that she is the face of pediatric transplants and even had a billboard in Times Square! That is amazing. What is the one important message you hope to pass on to other people because of Matilda's journey? Also, if you could say something to the mom who is just starting on this transplant journey, what would you say? What would you say to yourself if you could go back in time?

Kelly: I know that the thought of losing a child is unpleasant, but I want parents to think about the possibility of donating their child's organs before a tragedy takes place. In the emotion of loss, it is easy to focus on your own healing but there are 1,900 children in the US right now waiting for a second chance at life just like Matilda received. My hope is that people will think about the beautiful life that Matilda has, and consider organ donation.

The idea of an organ transplant is terrifying, there is no doubt about that. There are really scary statistics, followed isolation during recovery, the possibility of complications, and a lifetime of medical costs. BUT, Matilda is nearly five years post-transplant and we feel normal. We feel like a whole family again, full of more life than we knew was possible. More appreciation for hugs, laughter, and everything in-between. This wasn't just a second chance for Matilda. It was a second chance for all of us.

Miggy: Lastly, what is the biggest lesson you’ve learned since becoming Matilda's mom?

Kelly: During the 72 days in the hospital with Matilda, most of them with her in the PICU on life support, I felt like I gained a lifetime of lessons all at once. The first was of letting go. More than anything, I prayed for acceptance. We didn't know if Matilda would survive long enough to get an offer, we couldn't control the outcome of the surgery, we couldn't even change her diaper or give her a bottle. Her life was completely out of our hands. To accept that circumstance without blame, hate, or frustration was the most freeing feeling I have ever experienced. She was in God's hands, and that was more than enough.

The second lesson, is the one that sits with me daily. Love is most important. I didn't know how many days I had with Matilda, but I wanted to make sure that I filled each of those days with as much love as possible. I wanted to give her all the love of an entire lifetime, so there wasn't space for fear, space for doubt, space for sorrow. When we put love first, everything felt okay.


Aw Kelly, I love you! (I know Kelly in real life, so it's OK to say that.) Thank you so much. Your last two thoughts are really resonating with me. "To accept that circumstance without blame, hate, or frustration was the most freeing feeling I have ever experienced. She was in God's hands, and that was more than enough." That is really beautiful. As is your last thought: "Love is most important." It really is, yet it is also so hard to keep it in focus sometimes. But perspective is an amazing teacher and I'm glad your experience with Matilda gifted you with such beautiful life lessons as well as a healthy, vibrant daughter! Thanks for being the ray of sunshine that you are and please give those adorable kiddos a squeeze from me. 

It never ceases to amaze me how these spotlights that have a common thread in disability or special needs of some sort, are always so different and you can learn something new each time. As always if you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.

Have a great weekend!

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