The story of our second son, Cohen really starts with his big brother, Nolan. After struggling for years with infertility and finally IVF treatment, we were blessed with the arrival of our first IVF miracle, Nolan. Both my husband and I thought we would never put ourselves through the trials of IVF again, but after seeing Nolan’s uniquely empathetic and nurturing personality bloom at a very young age, we felt a strong desire to try IVF once more in hopes of giving Nolan a sibling.
We were living in Edinburgh, Scotland at the time, and the financial circumstances for attempting another round of IVF were more favorable there. Amazingly, we hit the jackpot again with our second miracle pregnancy.
At our 12-week scan we learned that the baby had an abnormal nuchal translucency measurement. My thoughts swirled with all the potentially life-threatening conditions that could be associated with this news. My husband and I loved this precious life, created in the image of God, and knew we would not choose to terminate. But we wanted to prepare our minds and hearts for whatever diagnosis this little one might have, so we elected for further diagnostic testing.
In January of 2020, we got confirmation of the diagnosis of trisomy 21. In many ways I was relieved that this was not a terminal condition, but also filled with new fears about this baby’s future, our family’s future, and my fitness to parent a child with different needs. I was offered termination on more than one occasion, which always knocked me for a loop. I had many questions and concerns about this little one, but the question of whether we would continue with the pregnancy was never a thought. This baby was already so loved and an answer to many prayers.
We had originally planned to move back to the US after the baby’s birth, but after receiving the diagnosis, we decided we needed to be back in the states for his or her birth. This meant a hurried move home while the world was going in to lock down.
After the dust settled from our quick return home, I finally got established with a local OBGYN and started to prepare for this baby’s arrival in July (or so we thought). On June 11, 2020 our second IVF miracle, Cohen James, arrived 4 weeks earlier than expected. It was clear from his first moments that Cohen was a fighter, and quite a cuddler. After a 3-week stay in the NICU he was discharged home.
Cohen was growing and thriving, until we noticed an odd twitching movement when he was 10 months old. Our pediatrician did not seem too concerned but put in a neurology referral. In less than 12 hours the episodes became more frequent and were lasting longer, so I took him to the ER where he was admitted. After an overnight EEG, he was diagnosed with infantile spasms, a potentially devastating form of seizures. Treatment with high dose steroids was started immediately and the side effects took their toll on our happy boy. We knew the treatment was essential, but the change in personality was hard to watch. By God’s grace the treatment fully resolved the spasms, and he was able to wean off the medication. After a few months we had our little light back.
Cohen started at the Meyer Center in 2021 and has continued to grow and blossom there. He can light up a room, making perfect strangers smile and laugh. And his relationship with his older brother Nolan is pure magic! I have no doubt that God perfectly designed Nolan to have a sibling with special needs.
Finally, Cohen has exposed many cracks and misconceptions in my own beliefs and values. Both my husband and I are constantly being refined by both our children, but Cohen has sharpened and energized us to live a life of true acceptance and inclusion. We know that both of our boys are capable of many great things. We also know that their achievements do not define their worth or value. Our prayer and hope for both our sons is that they will continue to be a light to our family, friends, and to everyone they encounter.
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