D-Day

I've had a few of these days in my life. So few I can count them on my hand. I'm not talking about Normandy, but my own sort of awful red-letter days, days that changed my life forever. For me, 2 of them have been my own life-changing Decision Days, one Devastating News Day, the Death of our unborn baby day, and now another big Devastation Day.

It began when I was laying on the ultrasound table for my 19 week appointment, Wednesday, March 27th, expecting to confirm that we were indeed having another boy, and instead listening to the maternal fetal medicine specialist try to explain to us that our baby most likely has a "chromosomal anomaly". This hit Dave and I like a ton of bricks. It was like having an out of body experience as I watched myself on the table and wondered, "Is this really happening to us right now? Am I really hearing this?"

Dave and I left being prepared that our baby most likely had Trisomy 18, or Trisomy 21, Down Syndrome. It was a hard weekend to compute it all as we kept it to ourselves amidst a work 'rewards' trip and my Grandmother's funeral that Saturday. Mostly I just wanted to be alone and read everything I could...everything from studying every term and medical condition the doctors had told us they saw in the ultrasound, as well as everything in the scriptures that could give me hope and peace. (And did.) But I read the facts first, the conditions. I must admit I'll never forget at one point, Thursday morning by the pool, reading all of the challenges our baby (and thus ourselves) were going to have to face, and looking up at the sky and for the first time in my life literally asking the question, "Why?" Not 'why me', but just Why. It was hard to understand why the Lord does want you to go through this, and to begin to question if it is a blessing, or a chastisement. Eventually we came to realize it wasn't for us to determine or even understand, but just knowing that it is God's will is enough. I was overwhelmed with emotions of worry and angst for this unhealthy and challenged baby as well as mourning the loss of the family life Dave and I always thought we would have.

Later that day I focused heavily on the scriptures. Reading about adversity led me to Abraham, as ironically he is also focused on in my patriarchal blessing, and his sacrifice. One great truth and peace rings in my mind over and over, "The Lord will provide". He will provide for us and baby Paxton just as He provided for Isaac. He will provide the peace we need now, the ability to prepare, the knowledge of how to care for him and cope with his challenges, how to continue to give our best attention to our other boys', etc. In all things, He will provide.

I can't even begin to say all the things that I have learned during this time. My brain, my hormones, and my nesting have been on steroids since I have learned that our life is going to change forever. A life changer-- but not a life stopper-- and trying to be prepared in all ways for this actuality has been my unending focus. Life certainly has more purpose now, more seriousness, some sadness and anxiety, but still a lot of joy. I'm reveling in the things my boys can do, and at the same time there is also a tinge of sadness at the thought of what Paxton might not be able to. I feel like time is ticking and I need to do all I can easily now before things aren't so easy anymore. But all those thoughts are just "If's" right now, so it doesn't do any good to dwell on those possibilities of "what won't be". And thankfully, after 2 months of those things hitting me in the face, I feel like I can look completely past them now. After coming to realize you basically need to deal with two possible realities, one death, and one a long life of care and struggle and blessings, amazingly you are open up to God's will in such a free way that you can just take one day at a time and know it is all entirely in His Hands. And I am so thankful it is in His Hands!

I guess I should say what Paxton does have. The amniocentesis revealed that he has a chromosomal deletion on chromosome 7. It's so rare and unheard of that there is not a name for it. In fact, only 15 other cases have ever been reported, and not one matches the gene breaks that Paxton has exactly. The doctors have inferred the similarities in those reported cases as much as possible, but the fact is that Paxton's situation is and will continue to be full of many unknowns. Even life expectancy is not something we can "expect." But we do know that Paxton will be mentally and physically challenged (disabled), as well as have unusual physical characteristics and health struggles, language and developmental delays, etc. He also has his own set of health challenges that really are what worry us right now- possibly hydrocephalus if the ventricles in his brain keep enlarging, and a heart defect that the head cardiologist at Primary Children's Medical Center has never seen before, which could require immediate surgery upon delivery. He also has kidney problems and right now his measurements have dropped to 2.5 weeks behind average. Just praying for his literal growth has become part of my every prayer. Needless to say, we are praying for Peace, praying for Paxton. (Pax means Peace. How fitting.)

I guess because I have lost a baby before, and through that experience I had to trust and learn that it was God's will that that happened, the same has to apply for me now. If God didn't want this baby to come this way, he wouldn't be. And by that truth the opposite also has to be true, if he is coming this way, I believe it is God's will. Science tells you it is completely random for that egg or sperm missing part of a chromosome to be fertilized, but my spirit tells me it is God's will. As scared as I was in the beginning, soon after I also felt such a humility rest upon me, about the kind of experience this would be for our family and the power it would have to draw us all closer to God and returning to Him someday, and if that is what this life is all about, then it's actually quite a blessing. That's how I feel about Paxton now. He is completely a blessing. And after struggling for a while to know how and what to pray for, I pray for his life, for his health. I know God knows what's best, and He knows I truly seek His will to be done, and I know it will be. But I pray to know Paxton. I know he will be a blessing in our life and I only hope we can bless his life as much as he could possibly bless ours.

We love you, Paxton, and we really hope to meet you.