As I lay on the operating room table, looking up at all the brightly shining fluorescent lights, the fears and anxieties ran deep as our lives were about to significantly change, forever. Even writing this, I can remember being in the OR like it was yesterday. I can remember being scared out of my mind for what was to come, of course happy to finally be a mom, but in general, terrified of how our lives would dramatically change. There’s nothing in the world that can prepare you for parenthood, but parenting a medically needy child, living day in and day out with the fears and anxieties of what could happen is enough to paralyze even the strongest and healthiest of minds.
Once all of the OR team was prepped, the CVICU team prepped, and Stephen was finally brought in, the next thirty minutes was quite possibly the longest of my life. We had been told that Easton would probably come out “blue” and wouldn’t be able to breath on his own, and the first thing I heard the doctor say was that he had a full head of hair and then it happened. He cried. On his own. Breath filled his lungs and right then and there God supplied life to our little boy. At 12:33pm on June 15th, our Easton Bauer was born.
As I reflect back on the first six weeks of his life and our lives, we spent all of our days at the hospital, and finally we got the news that we could take him home. That he was stable enough to go home with his parents who had no idea how to take care of and manage a “normal” baby but add in dozens of medications, feeding pump, NG tube, CPR training, etc and it was a lot to process. Because Easton’s heart is so complex and unique, they couldn’t give us and still can’t give us a game plan. We went month by month, going back to Houston for doctor appointments until we heard what no parent ever wants to hear, “open heart surgery.” We knew all along that it was inevitable but actually hearing it and processing it will knock you to your knees. It’s like a punch below the belt, that takes the air out of your lungs.
When Easton had to have surgery, he was just five months old. We were still enjoying the sweet baby cuddles and smiles and had no idea what to expect after surgery. There are so many complications that can arise from being on a bypass machine for hours as well as from rerouting blood flow in the heart. I remember the pre surgical consult, when the surgeon was quite frank that he couldn’t promise us anything. Not even life. The morning of his surgery, Stephen and I didn’t speak much to each other, we just tried to soak in as much time with Easton as possible. The prep time was terrible. You’re waiting and playing and laughing and all of the sudden, you sign papers and it’s time. As you hand your baby off to team of strangers, albeit, highly qualified strangers, there are no words I could ever type on this keyboard that can convey the pain, hurt, and utter anxiety that fills your body as you watch your baby being toted off. A piece of you is gone. A piece that you don’t know if you will ever get back or the condition of what life will look like post surgery. We waited a painful 10 hours from the time they took Easton until we saw him again. When we saw him, it wasn’t really the Easton we knew. It was a pale shell of the sweet boy we know and love. He was sick, very sick, but we were thankful he made it through surgery. As a parent, sister, friend, daughter, acquaintance, I can’t even BEGIN to even thank all of you for your diligence in praying us through that day. November 20th 2015 is a day I will never forget, for so many reasons, but it is a day that we weren’t promised anything and God continued to supply us all with what we needed, even life for our sweet baby boy. After just 11 days after his bypass surgery, we were discharged from the hospital. A miracle.
After we came home from the hospital, we enjoyed our first Christmas together and found out that we were expecting another miracle, baby Sparks 2. This go around, we didn’t spend hours upon hours at the doctor’s office or go through shot after shot, it just happened. Floored and shocked to say the least but humbled that God saw fit to grow our family. A prayer that we had prayed for years and didn’t know if it would ever come to fruition, but God continued to be faithful in ways we would have never pictured.
Fast forward six months, and we continued trips to Houston, doctors appointments, heart echoes, appointments for Bennett, home health therapies and endless smiles and laughs from our Easton Bauer and we are here. A whole 365 days. Some days filled with fears and uncertainties. The anxiety creeps in and we find ourselves wondering how many years will we get to spend with Easton on this Earth. But then God shows up, replaces our doubts and fears with hope and joy and reminds of HIs faithfulness. Sure, we know what it’s like to have broken expectations of what life, love, friendship, community, parenting, and marriage all look like when you have a chronically ill child, but we are utterly thankful for our closest friends, family, and prayer warriors that have prayed us through 365 days of life with our Little Red Ninja.
Happy Birthday to the sweet little blonde hair, blue eyed boy who made me a momma, Stephen a daddy, and who constantly shows us to enjoy each and every day because it is a precious gift. If there’s anything I’ve learned over the course of this first year is that just because Easton has heart disease makes him no more susceptible to enjoy life or even have a long life. I am blessed to be a mom. More blessed (in a different way) to be a mom who understands the fragility and sweetness of life. Easton Bauer is a loved little boy and we continue to pray big things for his life. May he continue to love and share his sweet spirt and personality for as many days as the Lord allows.
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