down syndrome – Ben For The Win

Toward the end of my pregnancy, my doctor in Lubbock cleared me to continue to only have my monitoring done in Amarillo, rather than making the trip to see him every few weeks. Our baby’s heart was doing well and he cleared me for delivery in Amarillo, rather than Lubbock or Dallas. Our baby would not need heart surgery for several months, a huge answer to prayer! The stipulation to this arrangement was that I would need go to my OB twice a week for fetal monitoring and then a third time for a sonogram, every week until Ben’s arrival to make sure he wasn’t under too much stress. I quickly agreed and got the appointments set up at the office in Amarillo. Several weeks of testing went by with only a few tests showing small indicators of an issue, nothing to be concerned with though.

On an unusually warm January morning my husband and I got up and went to our sonogram for that week. Upon realizing the rare and beautiful weather for January coinciding with a day he had off, my husband scheduled a tee time for after our appointment. Benjamin apparently heard that happening and decided to make plans of his own.

The sonogram showed that my amniotic fluid had dropped dangerously low in that one week, and it was time to bring our little guy into the world. We were given the time to go get our bags from home and head to the hospital. Our delivery was quick and my experience with this second c-section was significantly better. I heard my baby boy cry and got to kiss his cheek before he was swept away, my husband close behind him, to the NICU to have a full work up of testing. We were concerned about his heart, but knew he was in great hands. I lay on the table talking with my nurse, OB and anesthesiologist while they finished the surgery. (A strange experience, I assure you.)

I was wheeled into the recovery room, all smiles because I had done it. I had my baby and had no complications during surgery. Cody came to meet me in the room, and said he needed to tell me something. However, he was interrupted by the anesthesiologist who came in to give his good report of how surgery went and what I should expect over the next few hours for recovery. I thanked him and turned back to Cody, finally realizing something wasn’t right. Cody explained that Ben had another defect with his digestive tract that could not have been detected on ultrasound, and would require immediate surgery before he could begin eating. I felt tears well up in my eyes as my mind and heart slowly process the news. The neonatologist came in to describe the defect in much more detail.

A few hours later when we were back in the regular room, with both sets of grandparents in the room, Cody and I explained what was going on. The neonatologist returned to tell us that the decision was made that because of his heart defect, the surgical team did not feel comfortable putting him under anesthesia in Amarillo, so far from his heart surgeon, so they would be flying him to Cook Children’s hospital in Fort Worth. Ben would be leaving within the next two hours. We all cried and held each other as it became obvious that Cody and I would be separating. Cody would go to Fort Worth to be with Ben, and I would need to stay in Amarillo to recover from surgery. Cody and his parents left to go pack and prepare a car that they would be taking. My nurse came in and told me she was going to do her best to get approval to get me out of bed before I was really supposed to so that I would get to hold Ben at least once before he was taken. After hustling around for a bit, she and another nurse brought me a wheelchair, and helped me into it. They moved so quietly and quickly, it made me feel like we were committing a crime. I am now so thankful they broke the rules for me.

I got to hold my Ben for about 45 minutes before he was loaded into what I can only describe as a gurney that looked like it was designed by NASA. As he was wheeled down the hallway, with 6 flight crew nurses following him, Gennie was allowed to put her hand in his incubator to see him for the first time. She said, “baby,” and I thought my heart would explode. Cody hugged both of us goodbye and he and his parents left for Fort Worth, chasing our baby in the air.

In a matter of hours, Ben made his whirlwind entrance and then was off to Fort Worth for surgery. My mom and sisters sat with me until the late hours of the night and I was able to get to sleep. I am grateful for all of the support we received in those first few days, and a care team at BSA that made it their mission to get me stable and cleared for discharge as soon as possible. Less than 48 hours after Ben was born I was able to get on the road to be with him. I got the call that he was going into surgery just a few hours before I left Amarillo.

He made it through surgery and I was able to be in Fort Worth with Cody for Ben’s two-week recovery. I may write another time about our experience in the NICU, but for now I will say this: we owe an enormous debt to the nurses and doctors that took care of Ben in those first two weeks of his life. They showed great patience, taking time to answer all of our questions, never making us feel rushed or unimportant. Ben healed beautifully from his surgery and while we were sent home with Ben needing much more medical care and attention than a typical baby, he has been a great joy.

This has been my greatest surprise and evidence again of God’s grace in my life. When Ben was born, he transformed from what I had imagined. The best way I can describe it is to write it this way: before he was born he was my baby with DOWN SYNDROME, now he is MY BABY with down syndrome.

The main focus is now that he is just truly my child. My child who happens to have down syndrome. I spoke with a few mother’s of children with down syndrome who told me this would happen, but it is just very hard to believe when you don’t understand. Just as he has blue eyes and dark auburn hair, he has down syndrome. And that is all.

I have continued to, and I am certain will always experience, hurt or disappointment when I feel like down syndrome does inhibit him, or cause him pain – like in these surgeries, but I honestly am not scared of it anymore. It is not the boogie man under the bed like it was before he was born. I finally am able to peek in the scary corners to see that it is just my baby.

Down syndrome, I am sure, will pose many more unknowns and challenges for us in the future, but for today it has provided me with a snuggly, sweet, almond-eyed baby for me to love. I love this little Benjamin, and I hope he will always know that.

For the most part my life has played out pretty much according to plan. Even if it wasn’t planned, I can’t say it has been unexpected. As I get older the more and more I realize that this is a blessing I never knew to count. There were no surprises in the stability of my home life. My parents have always cared deeply for each other and loved on their six kids with care for each of us individually. I always had clothes, and even though I joke about having a lot of hand-me-downs, I also had a lot of new clothes to wear. I never once questioned where other needs like food or shelter would come from. Even beyond these basic necessities that I was so blessed to be oblivious to the fact that they are not a given for everyone, my life folded out naturally and easily and with a lot of goodness.

The first real experience that rocked my world, seeming to come from no where, was death. I have now lost several family members, some very tragically, and some as a relief from bodies worn down in old age. I miss them terribly. Loss is hard. Grief can be overwhelming and sneak up on you when you least expect it. Not knowing what life will look like without someone is even more difficult.

It is unknown.

That is what I am struggling with now. The unknown. If you haven’t read my previous post, here is a quick synopsis: I have received a prenatal diagnosis for Down Syndrome with my second child, Ben, and his heart is growing with an AVSD.

I do not personally know a single person with Down Syndrome. All I know is the sweet ads that I have seen run on TV featuring a person with DS (I realize this is a new privilege that I even have this exposure) or the Instagram account I have followed for the past 5 years called The Lucky Few, previously @macymakesmyday, because she did just that. Macy would make my day with a cute face or dancing at her hip hop class. But I would leave it at that. A smile, and then click my phone off and forget all about anyone in the world of Down Syndrome.

I haven’t had a friend I can turn to, and say, “You have been through this, what is next for me?” Being in an unknown space, where you don’t know even where to start to find resources to reach out to is incredibly isolating. A silver lining I am seeing in this is that I have 5 months to prepare. I have been so blessed to have family and friends who just let me talk.

They let me process.

I received the first “DS is a possibility” message from my doctor 10 weeks ago, and after follow up tests, have received the “We are almost certain he has DS” message 3 weeks ago. It is new and fresh, and I have finally gotten to the place where I am giving myself grace for that. It has been my reaction to try to put on a brave face for my family and say I was fine and that I am just taking it one day at a time. My insides were writhing in fear and anxiety of not knowing what the heck my life was about to look like. Here are a few of the things I have heard when sharing our diagnosis:

“Oh, I can’t imagine.”

”Well, I can’t imagine better parents for a child like that.”

“We will love him no matter what.”

When we found out we were pregnant with Gennie, I was scared, we weren’t trying and I just was not sure I was ready to be a parent yet. That fear pales in comparison to my fear of what parenting Ben will look like, and we were trying to have a baby this time! It seems silly to me that I would be trying to have another child, but only one that I have special ordered exactly perfect from God.

All of these things that I had been feeling and not expressing came crashing down last week. I got in touch with another mom that I have come to know through Instagram. @acefaceismyfriend or Micha Boyett is actually from my hometown as well and I have known her family for a long time, but not her personally. Almost 4 years ago, she received her prenatal diagnosis that her son Ace, would be born with Down Syndrome. Last week I stumbled my way through her old blog posts and found some things she had written about her experience in the early days of being Ace’s mom. It shook me, because this is what I had been looking for. A first hand account from a real mom, walking exactly where I am now. I will link a few of the best ones that have helped me work through my feelings here:

I sent her a message to thank her for the things she had written, and to my surprise she wrote back. Her message to me said, “I would love to chat with you more through this season. It’s so hard and the grief is real.” Waves of emotion swelled up in me and crashed through that wall I had built keeping my real emotions from penetrating my heart. Grief is what I had felt. I was grieving the loss of the son I had pictured in my head. I was sad that my day dreaming of what his life would be like and the kind of man he would become were smashed the day I heard the diagnosis. I was grieving, because the son of my imagination, was not my son at all.

All of the things people had been saying to me came from a place of love. I would say thank you, or just nod in agreement, but inside I was shouting, “But I don’t want this!” I don’t want Ben to have DS. I don’t want him or my family to have to experience these specific difficulties. I don’t want to have no idea what his life will look like. The next few days were hard, messy, and filled with allowing myself to just say out loud, all of the thoughts that I had been too ashamed of to say before.

“I don’t even know what to hope for Ben.”

“I don’t want Ben to have Down Syndrome.”

“I am really having a hard time with this, and don’t have any positive emotions about having another baby yet.”

My mom listened. My sisters listened. One of my dearest friends and a cousin listened. Cody listened. None of them tried to offer feedback or advice. They just sat with me in the gap of my sadness and listened. This has been the number one most freeing thing that I have ever experienced in my life. I allowed myself to acknowledge my fears and the unknown and then just rest.

It has allowed me to feel it, lay it down and let it go. I know I will still have hard days. Today is a hard day, but I can surrender those to the Lord. I can lay it all at His feet, say that I am unsure and allow Him to be all that I am not. I still have a long way to go in releasing it, and finding joy in this new life that is unexpected. But what a peace it brings to know that it is not by my strength or my ability that I can do any of it. It is God’s grace that allows me to live today, to have this breath, to write this blog, to pray for my sweet Ben, and to one day meet him. God’s grace will fill the spaces where I feel like I am lacking or unprepared.

His Grace is all I need.