How many times can you remember where you were on a particular day, at an exact time? July 16, 2015, is that day for me. I remember because that was the day we found out my unborn son was not developing correctly.
I sat in a tiny 4’ x 10’ office. A room used only for moments when parents are told of concerns about their unborn child. The only furniture in the room was a desk, an office chair, two patient chairs, and a box of tissue. I waited for what seemed like an eternity for the doctor to come in. On the wall hung a large flower painting. I remember thinking it was an unusual choice for such a small space. The colors were vibrant, and under other circumstances, I may have found comfort in its beauty. However, at this moment, I vividly remember the stark contrast between the beauty of the painting and the sinking feeling in my heart. I knew life with my husband and our two older boys was never going to be the same.
Then came the moment where I was told of not one, not two, but many markers indicating a chromosomal disorder. The biggest organ affected was the baby’s brain, which meant he could be severely mentally disabled or live in a wheelchair unable to function on his own, and only if his condition didn’t cause a spontaneous late-term miscarriage. There was even the possibility that he might not survive outside the womb. We found out Levi had Down syndrome and 9p Deletion syndrome, a lesser-known chromosomal disorder where a piece of his 9th chromosome was missing.
The weight of this pressed down on me, suffocating the life I had known. The painful thought of losing this baby I had prayed for, wished for, and dreamed of was almost more than I could bear.
I began to mourn Levi’s future. I had taken developmental milestones for granted with my two older boys—holding their heads up, rolling over, crawling, walking, talking, and running. And now, I was faced with the possibility that if I was able to keep this child, he might never learn how to do any of those things or be severely delayed in all of them. I may be his primary caregiver for the rest of my life or the rest of his life—however long that might be.
All these thoughts flashed through my mind in a matter of minutes. But even in the midst of the whirling, chaotic thoughts, a moment of clarity broke through as the doctor asked me a question. In light of all the possibilities, would I like to terminate the pregnancy? Moments before I didn’t know up from down, but as I heard those words, I knew my answer. It was not my choice to make. Whatever lay ahead of us, I had to trust that God had planned this child’s life. With special needs or without, He had a purpose for him.
The next two months were the darkest months of my life. I cried. A lot. Not just pure tears of sadness. Deep soul-agonizing weeping. I doubted whether I had the strength to be the mother he deserved and needed. I feared I would fail.
Levi turned 3 in November. That’s 36 months of specialist appointments, MRIs, x-rays, CAT scans, blood draws, 8 surgeries, a feeding tube, check-ups, weight checks, physical therapy, occupational therapy, speech therapy, hospital stays, and emergency room visits. But, it has also been 36 months of more love than we knew could exist in such a tiny human. Thirty-six months of my big boys doting over him, laughing at his hilarious antics, admiring his adorable almond eyes, and thanking mom and dad for having him. And thirty-six months filled with incredible personal growth.
Thinking back to that tiny meeting room, there are several things I’d like to tell any parent who finds themselves in a similar situation. First, just breathe. Since Levi joined our family, we’ve had moments where we were terrified by the uncertainty of what the future held. For instance, when he was diagnosed with failure to thrive at 8 weeks old, due to his difficulty with swallowing, I was terrified by the thought of him receiving a feeding tube. Then it happened, and the feeding tube saved his life. And after three years, the feeding tube is entirely normal to me. Moments like this have taught me, “New is only new for a short time.” So breathe. You’ll get through this, one step at a time.
The second thing I would tell parents is that no matter the diagnosis, your precious child is a unique individual, with a personality, characteristics, likes, and dislikes all their own. When I look at my son, and when people who genuinely know and love him look at him, we don’t see a diagnosis. All we see is Levi and every incredible detail that makes him uniquely himself.
The third thing, and one that I am still working on, is not to compare your child to anyone else. The first year of Levi’s life, I found myself asking mothers of other children with Down syndrome how old their child was when they rolled over, sat up, walked, talked. I also asked mothers of children who had a feeding tube how long it was before their child no longer needed it and the button could be removed. It was comforting to feel like I had a timeframe to plan for. But I was setting myself up for disappointment. Especially when that timeframe came and went, and Levi had still not reached that particular milestone.
My favorite quote about Levi came from his pediatrician. When we found out how complicated his diagnosis was, Dr. Lytle simply stated, “This just means Levi will write his own story.” In those nine simple words lays the profound truth that no matter how much the textbooks and research tell us about our child, our child is not bound to follow that information.
For that reason, I have learned to be my child’s advocate. The professionals who help take care of our children are the ones with formal education for that specialty, and we need them. However, you are the voice for your child. You know when something is not right. You know their strengths and weaknesses. I encourage you to speak up and be heard when it counts the most. Since I am a quiet, ‘don’t rock the boat’ kind of person by nature, this was difficult for me in the beginning. But, I quickly learned how to speak until I was heard. Thankfully with Levi’s wonderful team of specialists, we have not had to struggle through this. Partnering with your child’s medical and therapy team is vital to everyone’s success!
Lastly, I would recommend sharing your child. It’s healthy for your child to learn to love and be cared for by other people. Having others to lean on, and watching them form a bond with your child, alleviates the feeling that you are alone in this journey.
Today, Levi is a determined, lovable little boy. He’s full of life and joy. He never meets a stranger and freely hands out hugs that melt hearts. He continually teaches me new lessons about life, love, forgiveness, selflessness, strength, endurance, joy, and laughter. Lessons our family perhaps never would have learned without him and his unique genetic makeup. His life is meant to be a light to those around him. Who am I to do anything less than allow his light to shine?