Little People With Medical Issues
When one has children, young or old, newborns or adults, all they want is for their children to be happy and healthy. I was recently talking to a friend about what happiness looks like, and one thing I put on my list was that my kids would always be seemingly happy and most importantly healthy. Seems simple, right? The average thought is, pretty much anyone can accomplish that. Well yes, many can, and a good share of illnesses can be treated, but sometimes ya'll, kids are born with things or acquire things that just don't go away with bubble gum flavored Penicillin or grape flavored Motrin. It is the saddest reality, but it's also true.
These photos were taken this Summer on my mom's porch shortly after learning Mattie had hardly grown. She's wearing a Tea Collection romper and Ugg sandals. Girl has great taste.
If you've read the "About" section of this blog, you know I'm a licensed pediatric nurse, but am currently taking a life pause. I will eventually go back, but the timing of that is uncertain at this point. You may also have read that my daughter was born with Wolff Parkinson White Syndrome. A syndrome that allows her heart to beat at literally 300bpm any time of the day - and then with just a cough or sneeze she is able to self convert back to around 120bpm (a normal HR for a child her age). That is not the end of it folks - she was also deaf in one ear for the first 6 months of her life, she has had a ton of trouble growing/gaining weight her entire life, and she's needed weekly physical therapy to get her gross motor development back within normal limits since she was about 10 months old. It sounds like a lot and it has been a lot, especially for me, because I'm the default for making all the healthcare decisions and I think moms are just more emotionally attached to their children in a way only moms and children can be. But we've had a lot of help along the way and people in our corner.
Once Matilda hit a year, we felt like the hurricane lifted, the waves settled down and the boat sailed a lot smoother. She still needed physical therapy, her medication regiment for her heart rhythm was somewhat on autopilot and her tubes in her ears were working because she turned into the jabber jaws of our family (she still is!). We of course celebrated, let our guard down and I tried to stay calm and enjoy the moment(s). In June we went to Matilda's 2 year WCC where we learned she had not gained ONE pound or grown ONE inch in 6 months....life WTF, people. People seriously asked us if we fed her. I wanted to reach across the table and choke those people, but despite all the things, she wasn't growing. So her pediatrician suggested we meet with a geneticist and look at possible syndromes that Mattie could have given she had some heart issues, her growth always lagged, and she had gross motor delays. My world shattered for about 24 hours - thinking about the worst and this was on the heels of me resigning from my job. So there was a lot of newness going on and some unwanted stress. We did as instructed, met with a geneticist, and he was a lovely man and gave us some very educated suggestions of things to do. But I just knew in my heart or in my gut or possibly in my head (I tend to be dumb as rocks when it comes to my own kids - I promise I'd take good care of yours) that some of what he was talking about was overkill. He wanted a full panel of labs, x-rays, genetic testing that would cost over $2K, etc.
Matilda yesterday after her pediatrician appointment. We celebrated! I mean does it get any better than that. HA. Matilda is wearing New Balance sneaks and Gap leggings and tank top.
The day after we met with him, the kids and I left for Iowa and this ended up being for the best, because it gave me time to process, to sob-cry to my mom (solves nothing, but it feels good to get to cry to my mom), and to really think about the options with limited distractions and less chaos - I mean that more figuratively than anything. After returning from Iowa we had a busy couple weeks and I ignored some of the things that needed to be done for Mattie because she seemingly was doing great otherwise - walking, running, climbing, learning tons of words, jumping into water, and mimicing her big bro in every way possible. But once Kenny started school I knew we needed to get to the bottom of her not growing so we proceeded with a few tests that were minimally evasive and quite frankly the most cost effective. Turns out they were normal, her basic labs were normal and just today we learned over the Summer she gained 2lbs and shot up in height. In the depths of my soul guys I know my baby and I knew she'd declare herself one way or the other. After today the worry has subsided and I really feel like for the first time in a LONG time, I can celebrate my little lady for exactly who she is, because she could not be more PERFECT and more thrilled to live her life just as she chooses. Honestly, I hope that NEVER changes! And I hope nothing happens to my hair-dresser, because this tends to give me more and more grey hair by the month. ;)
But over these past two years, I have compiled a list of a few tips for mamas and daddios that happen to have a child with some medical issues:
Advocate for your child - request to combine procedures, try and schedule things around their sleep schedule, voice their preferences, etc
Trust your gut - you are their mom or dad and know them the best; trust that feeling in your tummy
Love them no matter what - this seems easy, but it's also incredibly common to pull away and put your guard up when tough diagnoses are made
Find your tribe - seriously your people matter; I would have never survived without my people showing up, watching Kenny, texting me, calling me, driving from Iowa to be with us in the dead of Winter, letting me cry over a glass of wine, etc.
You're the boss - doctors and nurses (especially nurses :) ) are great, but you are the BOSS of your child; once these initial tests all came back normal a few weeks ago, I said firmly said "no more - we are doing no more testing! Period. End of story!" Her genetic doctor calmly and kindly replied "yeah I think that's a good idea." Ha. He probably thought I was about to lose it, but seriously, enough is enough sometimes and you get to make that call.
Create a medical team you know and love - I adore Mattie's cardiologist, her pediatrician, and the genetic doctor we have gotten to know this Summer, and everyone in between; I really appreciate them all, but if I didn't, I would have no problem finding people I did love and respect
I hope none of you have to experience a sick child, but if you do, know you're not alone, many people have gone before you and many people will go after you, there are people trained specifically to help your child, and perhaps reference these tips. They've certainly guided Andy and I through what has been a hard but equally wonderful 28 months with our sweet, spunky, and spicy Matilda.
Mattie girl, Baby Sis, Silly Matilly, Tilly.....we love you so much and I sincerely hope you get as much joy out of the wold as you put into it.
XO.
AFK