As he walked into our post delivery recovery room, he closed the door behind him.
He walked over to my bedside to give us an update on the birth of our preemie twin girls. They had been born 6 weeks early and delivery was tough for Isabelle, twin two. The evening before was spent holding Grace, twin one, in our room, and looking at Isabelle in the neonatal care room, hooked up to many monitors, oxygen, and looking very pale.
Our pediatrician was young, in his first year of practice. I could tell in his eyes he was having trouble putting his words together.
“First of all, both girls are doing great. Isabelle is breathing on her own now and the nurses will bring her in shortly to join Grace.” I remember thinking, well, things should be okay then. But he paused, he was trying to read us, and trying to find a way to explain.
“Have you ever heard of Down syndrome?” he asked.
Of course I had, I was a teacher, I had a student with Ds, one of my favorites.
Why was he asking me this? I wasn’t putting it together in the moment, what he was trying to get at.
“Your daughter Isabelle has some signs, some markers, of Ds. She had a single crease on one of her palms, small nose bridge and ears, as well as more almond shaped eyes. If it’s okay with you, we’d like to do a blood test to confirm?”
I believe I nodded my head, as tears started streaming down my face. I looked at my husband Ken who looked very pale and had tears beginning to form. All this before even holding our daughter for the first time.
Four days later tests would confirm that our Isabelle did have Down syndrome, and she also would have a very large hole in her heart, a VSD, which would later require open heart surgery. We were able to leave the hospital four days after Grace and Isabelle were born, which was simply amazing considering they were born six weeks early.
I remember coming home in just a mix of emotions.
Lots of tears.
Lots of worry.
Thinking I must have done something to cause this, or maybe it was genetic.
Feeling a sense of loss for the lives I envisioned my twin girls sharing.
Would they go to school together, would they go on double dates or to the prom?
Thinking about her future, our future as a family, which now looked very different.
Would she need her open heart surgery soon?
Would she survive her childhood?
How will we manage me working outside of the home with all the needs she had?
We came in the house and turned on the tv, just to watch something as the girls slept. The first thing to come on the tv was a commercial for the Special Olympics. I broke down and sobbed. It was so hard to take this all in at once. I didn’t know how to care for her. I didn’t know what her medical needs would look like. I didn’t have the support from others who had walked this path before me.
We did however have God and, although this wasn’t the journey we had intended, we knew it was the plan he had been preparing us for when we said yes to him; to becoming parents and living a life of service.
I know so many people who come to read blogs from NHBO are adoptive parents, or potential adoptive parents. The adoption process is a very special and unique journey to parenting. It can be long. You have time to prepare, to research medical conditions, consult with specialists, stay up late at night, talking over months with your spouse, your parents, over whether or not you can handle it.
For us, we didn’t have this time. We hadn’t even held our daughter when we learned she might have Down syndrome. We didn’t get the months to research early interventions, potential health problems, how to set up a therapy plan. It was scary and overwhelming and so very hard.
Now, don’t get that confused with the love we felt for our child. We loved both girls more than anything in the world but, 10 years ago, there wasn’t the support and research that there is now. There wasn’t a FB group to join; FB was still reserved for kids in college. Doctors didn’t deliver the news with joy and optimism. There wasn’t a gift basket of goodies and books explaining Ds.
We were more or less left with Google and some outdated text to figure things out. There were tears, so many tears mixed in with the joy of new parenthood. It took time to find our new normal and understand all that is to be learned with you get a post delivery diagnosis.
We did so much of our own research on our daughters upcoming heart surgery, on the best feeding products, the best toys to help her meet her milestones. When using the search “special needs Down syndrome” we came cross Reece’s Rainbow and our hearts sunk. We felt so heartbroken knowing that so many children were without families, and at the same time so naive for not knowing, not doing more. Granted at this time we were in our mid twenties, but we were living a very self centered life.
My first thought was anger. How could “these parents” abandon their children for being born with special needs, special needs just like my own child. Again, I was naive. I knew so little of the reasoning. All I knew was my love for my child, and my need to protect her, and advocate for her in every way I could.
Little did I know if my child had been born halfway around the world and needed to have open heart surgery to save her life, I would have been in the exact same shoes as so many – having to make the choice between keeping my child and watching them slowly fade away, or abandoning my child in hopes they would be adopted or taken in at an orphanage that could provide life saving surgery due to not having the funds upfront to pay for a surgery.
I am so thankful I’ve never had to make a life altering decision like this.
Isabelle had her open heart surgery and rocked her recovery. She was released only four days after her VSD repair at 6 months old.
Having a twin sister was one of the biggest blessings as Isabelle had both a “personal trainer” and biggest cheerleader in Grace. She tried so hard to do everything her big sister was doing! They really help to balance each other out. Perfectly made and hand picked to be sisters and best friends for life.
Our desire to add a child who also had special needs through adoption had been in our hearts for years. We were being called to care for God’s children in the way he had called us to parent Isabelle and Grace. It was a scary “yes,” jumping in feet first. Our process had not been ideal. It was long, devastating and painful.
In the summer of 2016, after a very broken road for all of us, we brought home our daughter Everly Rose from China. She was also born with an extra chromosome like our daughter Isabelle. She was 20 months old when she joined our family and just learning to sit up. I felt as though we adopted a baby instead of an almost two year old.
She was so behind. She was so broken. We knew this was likely what we would see, but it was hard to envision until she was in my arms.
We had the opportunity to visit her orphanage in southern China. We saw children, the same age and older than our daughter tied to their cribs, sitting on sheets of plywood in soiled clothing. These children were so empty, shells of their former selves.
I understood her delays even more.
She was abandoned once by her birth family and a second time within the orphanage. She was simply existing within the walls.
I wish I could say that once we were home she flourished. I wish I could say she started meeting her milestones faster than we imagined, but she was hurting. She cried when we tried to have her put any weight on her feet. She didn’t know how to drink. She would sit alone in her crib during the night and just stare into space, not cry when she awoke.
She had learned if she cried no one would come.
It broke my heart just how broken my child was.
We saw specialists, we added therapists, we had feeding therapy. Slowly, so very slowly, she began to emerge as a beautiful little girl. We had weekly therapy to help her gain muscle strength, to help her get used to touching different textures, to drink out of a bottle.
Everly has been a puzzle with so many missing pieces. Some days I feel like we are getting closer to finding all the pieces, other days I feel like we may have pieces from other puzzles mixed in. It is so hard to know that so much time was lost while my daughter sat waiting for me, waiting for someone to come and love her.
I wish so much we had started the process earlier. Why do we feel so strongly that we have to have things in place before we start the process of adoption?
Children need families. Children need love and to be held. Children need us now.
Today Everly is four years old, and just began walking in the past month. She is babbling with intent. She has a killer smile when she sees the camera. She attends preschool with her brother Alex, who was adopted from China this past April. Alex is 6 weeks younger than Everly and has a blood disorder called beta thalassemia major.
Having experienced the process of adopting internationally, we knew we would adopt again, and began the process to adopt Alex around the 1 year anniversary of coming home with Everly.
The bond between Isabelle and Everly is one that only God could have created, taking two girls from opposite sides of the world, joined together by an extra chromosome and fate. The road may not have been smooth, very broken with a few detours and closed signs along the way, but the current destination is so much more amazing that I ever could have imagined.
I will always remember what one of my dear fellow adoptive mommas shared with us, “Your first Yes is always to God. Not to a child, not to adoption, not to a diagnosis, but to God.” We might not have said yes to all of the above, had God not gifted us with Isabelle, who undoubtedly guided us along the path to where we are today.
Let go of your fears; let go of the what ifs, and make that first yes happen.
You will be in awe of where it will take you.
– guest post by Sarah