Sweet Abel Paul,
Welcome to the world, son! I’m taking a break from our couch cuddles to catch you up on what has been the hardest and yet the BEST week of your parents’ lives.
It was just one week ago today that your mama & I were packing our bags and preparing to meet you face-to-face early the next morning. You were born to us at 7:53AM last Friday, January 22nd 2016 with your mama’s playlist running in the background. At that moment, there was an old hymn playing called “I Surrender All.” In truth, you were not making any noise because you were not breathing air very well, and the full weight of those humbling lyrics began to sit on my chest.
But you kept fighting.
You were struggling mightily, but you were fighting. We asked for some oxygen, and that turned out to be just the push you needed (that’s a birth pun, Abel, but you wouldn’t know because you refused to turn head-down). A couple minutes later, your heart rate had doubled and those lungs kicked into gear, and so here we are on the eve of your 1-Week Birthday. We are so, so proud of you.
Also a week ago today, we posted a message for everyone who had been praying for you all this time. We made note of how many faithful people were following along with us, but nothing could have prepared us for the overwhelming response your debut received last weekend. In just a 36-hour period, there were 25,504 individuals who visited your blog. And as of today, this little site of yours has surpassed 100,000 views… all from people who want to come read about YOU, Abel.
You are already so deeply loved, and your life here is celebrated daily by us and so many others.
One reality of this tough world you’ve entered is that all too often, people can make unfair assumptions about other people (I think we all fall into this bad habit in some way or another). Sadly for us, son, I’m afraid that several Doctors viewed you more as a blanket T-18 diagnosis than as an individual human patient… but the assumption that no Trisomy baby can sustain life more than a few hours after birth proved false, as it has in the lives of many other Trisomy children.
God has given you an earthly body that requires extra help, and as YOU fought on, we realized WE would need to follow your lead and fight for that help.
Thankfully, your grandparents & aunts & uncles were on the spot, and our family was also blessed by MANY nurses, hospital staff & knowledgeable friends that wanted to fight for you. You’ll probably never remember Kiesha, Kelci, Jess, Amanda, Jessica, Marlissa, Jen, Kylie, Kim Z, Julianne, Autumn, Julie, Caren, Todd, Joe & others, but your parents sure will. And truly, that doesn’t scratch the surface of names who jumped in to make us feel loved & comfortable during those first 4 days and through our transition home, not to mention those praying for the 3 of us from afar… It’s a beautiful, humbling thing to witness and be blessed by Christ’s Body in full swing.
Which takes us back to today, son. You are so very alive, but still very sick.
A blood test confirmed that you were conceived with an extra copy of your 18th chromosome, which complicates a lot of things. You need more oxygen right now than our air can provide, and the way most of us feel after walking a few flights of stairs is the way you feel all day. That makes meal times a lot more tiresome and tough to get enough food in your system for you to grow. You left the hospital at 4lb12oz and hadn’t gained any weight as of yesterday, so that’s why we prayerfully decided to drop that thin tube down into your tummy this morning. We know it’s a little uncomfortable Abel, but we think it will be worth it. Have I told you yet how proud of you we are??
The heaviest dose of reality about the way your earthly body was formed is that you have a very sick heart.
We had known this may be the case, and received final confirmation of its severity after seeing a new heart echo on Day 2. We are still trying to educate ourselves in full on these defects and their implications, but we are having to acknowledge through many tears that there may come a time when your heart is no longer able to do its job in keeping you here with us. We can’t know for sure when that would happen, but we do know that the hours we get to spend with you right now are a treasure to us, richer than any we had known prior to you. And ultimately, we know that even the longest life here is but a blip on the radar in the scope of eternity.
Even in the face of sorrow, you have brought unspeakable JOY into our lives, Abel. We can’t imagine having made any other decision but to keep you, carry you, and love you for as long as you’re here.
Now back to those couch cuddles…
Love, Dad & Mama