I finally found my words

The other day at work I sat there listlessly staring out the window watching kiddos run around on the playground, and I saw something amazing. There was Luke, running around with his friends in his funny Frankenstein-like walk. Although this doesn't seem like the most earth-shattering observation, it is for a little boy who doctors said may not walk until he was five. As parents, we needed to be prepared with "different" expectations because Down Syndrome was going to redefine our lives. They were right.

When looking back on our time in NICU, I remember wondering what our lives had in store. How were our friends and family going to react? How was I even going to find the strength to tell everyone that one sentence out of a doctor's mouth had shifted our entire universe? How were we ever going to figure out how to be parents, let alone to a sick little boy who couldn't even breathe on his own without help?

Mother Theresa once said, "I know God won't give me anything that I can't handle. I just wish he didn't trust me so much". While I agree with her statement, I'd like to amend it. "I know God won't give me anything that I can't handle without my friends and family."  Whether it was long hours in the NICU at birth or at Children's Hospital with pneumonia or just enjoying time together, our family has been Luke's biggest cheerleaders.

Through it all, Luke has shown more strength than all of us combined. From hours in therapy learning to hold up his head to bearing weight on his legs to walking independently, Luke continues to defy the odds and the dismal predictions that doctors made after his birth. Our hope now is that Claire finds the same sheer determination to fight the odds as she faces her own health struggles, albeit at this point, she seems to be perplexing the doctors.

To make a long story short, we have no idea what is going on with Claire.  During her 10 days in the NICU at birth, doctors suspected that she had some sort of genetic disorder due to her lethargy, low muscle tone, and recessed jaw, but the initial genetic panel came back clear. Since then, she has suffered from severe belly issues which have included an intolerance to almost any formula and even breastmilk.  Doctors have diagnosed it as everything from severe colic to immature digestive system. Well, when she barely gained one pound between four and six months, doctors finally agreed to admit us to the hospital for testing.

So, with Patrick deployed, Claire was admitted to LSU hospital three weeks ago for a full round of testing from cardiology, neurology, genetics, and everyone else who felt the urge to see the mystery baby. While the initial tests for blood enzymes/metabolic issues have come back clear, neurology performed a video EEG to assess Claire's brain activity. Unfortunately, they saw "abnormal wave lengths which indicate seizure activity", so we've begun medication. The good news is that our new prescription formula seems to be doing the trick with the belly issues. Now, the elephant in the room is "What the heck is causing all of these issues??!?!"

For now, all we can do is pray. If it is a genetic or metabolic disorder, there is no "cure". The question at that point is what medicines or therapies can we use to minimize any secondary symptoms associated with the diagnosis.  On the other hand, doctors may never be able to pinpoint what is going on. Babies are fighters. We have now spent 48 days in the hospital between the two kiddos watching them fight. Maybe this will all end up being nothing or maybe it will have a more profound impact on our lives than even Down Syndrome did. Only God knows.

This takes me back to my original point that doctors were right. Luke's diagnosis impacted our lives more than we ever anticipated; however, the distinction is, as Patrick always reminds me, is that it did not define us. We have been introduced to a world that we might have otherwise taken for granted. From teams of doctors and nurses to therapists to Alycyn, one of the dearest babysitters we could have asked for, people entered our lives whom we would have never met. Furthermore, we learned true compassion from our family and friends as Grandma Godinez has driven hundreds of miles for every hospital stay, my family has let me talk/cry/analyze every situation, friends have kept us fed, and neighbors have stepped in to take care of the house and dogs.

Today, we're in a situation that we least expected. We're up against a world of unknowns for what the future holds for Claire, but it is what IS known that will get us through. Quite simply, our friends are phenomenal. Typically in a stressful situation, I'd rely on Patrick for support, but in the funny twist of events that we call "military life", he is deployed to Hawaii. So, Kristen calls frequently to make sure I don't need to vent about the doctors' inability to agree on a direction to go, Angela keeps me fed, Girl Mahaffey supplies me with her infinite medical knowledge when I have no clue what doctors are saying, somehow Suzi has managed to keep me fed and with drinks all the way from Colorado, and there are countless others who have called/texted just so I know that they are thinking about us and praying.

Just the other night, Patrick was lecturing me that I can't sit here feeling sorry for myself and I told him to shove it. The truth was, I did feel sorry for myself. What are the odds to potentially have two special needs kids? What are the odds that one diagnosis would come when Claire was 7 months old and Patrick was deployed to Hawaii (seriously, who deploys to Hawaii?!?)? Why was I having to face this by myself? Tonight, Molly pulled me out of my emotional funk. I'm flying home to Kansas on Thursday for the annual Sigma Kappa reunion, and quite frankly, I am terrified to fly with both kids by myself. Although Claire's belly seems to be doing better, I can't say with 100% confidence that she'll be feeling well for the flight. Pair that with "The Human Tornado" aka Luke, and to say I am overwhelmed is the understatement of the year. But, after crying on the phone with me earlier, Molly surprised me with a text that she's meeting me at the Kansas City airport so that at least when I land, I don't have to be alone. Although, what I can realize now is that I haven't been alone yet.

"Please be a traveler, not a tourist. Try new things, meet new people, and look beyond what's right in front of you. Those are the keys to understanding this amazing world we live in."

For now, please pray for Claire. Pray that she has the strength to overcome whatever is going on in her tiny body, no matter how minor or major it may turn out to be. And thank you - for everything.