Who Needs Normal?
I’ve spent a lot of time in Facebook groups for moms of kids with Down syndrome this year. It’s been helpful to me to see other children with Ds, to hear what their moms are going through, and to learn all I can about the ways 47 chromosomes can affect my child.
Recently a mother posted that she had confessed to a friend that she sometimes still grieves that her daughter has Down syndrome. The person she spoke to answered her harshly, saying she should just be grateful that she has a baby at all.
The mother asked us if we ever felt like she does, wondering if she should be ashamed of herself and her feelings.
A lot of people in the Down syndrome community really celebrate the diagnosis and claim that they wouldn’t want their child to be any other way. I look forward to the day I feel that way too. But when I found out, I felt like my entire world was crumbling and God had withdrawn his presence from me. My mouth went dry, a wash of darkness went over my eyes so that I couldn’t see for a moment, and my body trembled uncontrollably. We’d been warned the night before, right after he was born, but I hadn’t thought it could be true until that moment. I was in my hospital bed recovering from an unplanned c-section, Rick was an hour away at the nearest NICU with Redmond, and my midwife and the OB who did the c-section were with me. The news came on the phone from the NICU nurse who had just finished explaining all Redmond’s medical concerns to me. I asked her the question, sure she would say no. She didn’t.
Two weeks later we received the results of his genetic test, confirming the suspicion. Young and bright medical professionals encouraged us, smiling as they told us how much we had to look forward to with our son. They explained that it’s a great time to have a child with Down syndrome because there’s been so much research and advancement in the last 20 years. If Redmond had been born 30 years ago, he would not have lived. I am incredibly grateful for the gifts God has given those with scientific minds who seek out answers and find incredible ways of providing healing and hope.
In spite of the bright outlook of the doctors, it took a few months for me to accept that the diagnosis wasn’t wrong. Redmond’s face was so covered in tubes that it was hard to see his distinct features. I obsessed over what “Down syndrome-type features” Redmond did and did not have. He has a strong palmar crease in his hands, but not much of a nuchal fold. He has some pretty crazy toes, but not the typical sandal toes. His fingers aren’t square, his ears aren’t low set, but he has a flatter nasal bridge. Surely the diagnosis was incorrect. He looks a lot like Eliana did as a baby. I considered asking the doctor to run another karyotype, unconvinced that the first one was correct.
I was terrified about what Down syndrome meant for Eliana and Charlie. Had I ruined their lives? Would I be able to parent them like I wanted to while I was caring for a disabled child? I was so embarrassed too. Terrible shame caused my face to flush hot when I thought about sharing the news.
What I was so embarrassed about, I cannot recall. Since that time, I have come to see that life with Redmond will greatly enrich our family, giving Eliana and Charlie a sense of compassion that many people lack. They will be able to see people who are different as individuals, worthy of friendship and love. We care for Redmond as a team. Rick and I are the parents, of course, but I work to actively involve them in everything I can. Eliana is a wonderful physical therapist. Charlie is a terrific diaper fetcher and bath time assistant. They adore their brother and have been told that he has Down syndrome. How much they understand of that at their age is questionable, but it will come with time.
My feeling that God had withdrawn his presence from me was just that – my feeling. God’s presence never left. He’s changed my heart to understand Down syndrome as a gift, to know that we are the best parents for him and we can trust our instincts, and that every moment we have with Redmond is a blessing. Writing those words still causes tears to rise and an ache in my throat. I do not claim to understand this gift. But I believe with all my heart that it is true and will become clearer every day. God has shown Himself faithful and mighty as He has taken this medically fragile baby and healed his body. One thing yet remains – feeding – and I have no doubt that He will soon eat and drink enough on his own to sustain himself.
Why in the world would I put such thoughts into words and publish them for the world to see? I have no shame in what I felt and thought, and if it can help one other parent in our situation feel better, it is worth it. It is understandable. We had no frame of reference for Down syndrome. It was a thing that was going to make our life hard, to make our family weird, and we really dislike weird. Oh, how we’ve treasured “easy,” “normal,” and “typical.” But if you know anything about us at all, you know how laughable that sentence is. Rick and I are far from normal or typical, having married for the first time at ages 47 (Rick) and 36 (me). It was not easy to be single for that long. Rick lived with his parents until we got married. We had our first child at ages 48 and 37 and our last at ages 52 and 41. As a single woman, I became an ordained pastor. We are weird! And we LOVE the weird people in our lives. Why we thought normal was so good is absurd.
Hard is another thing. I’d be lying if I said we’d come to embrace hard things. Rather, we’ve come to realize that we can do hard things. Hard things will not break us. Hard things will not break our marriage, will not break our faith in God, and will not break our spirits. Hard things are a part of life and God uses them to grow us into who He is calling us to be. Does God cause hard things? I believe we live in a fallen and broken world and hard things happen as a result of that. My theology isn’t perfectly worked out here, but I’ve learned that formulas do not exist. God doesn’t work that way: if you do A, then God will do B. God’s promises are true, but His timing is not our timing. We still do what we can to please God, to obey His word, but we no longer expect that our lives will somehow be free from difficulty or pain. The rain falls on the just and the unjust alike (Matthew 5:45). Job was a godly man, and yet he suffered terribly. We’ve learned a new level of difficulty and aren’t looking to find any deeper levels.
While I accept Down syndrome today and acknowledge that God has given us a gift, I would be lying if I said I still feel no grief over it. I regularly tell myself to stop borrowing trouble as I try to figure out a future for my son. His future is in God’s hands and I believe God has a purpose for him. I feel sad when I think about sending him to school where he will learn that he is different. There is a tinge of wistfulness when I see typical babies his age who are ahead of him developmentally. But when I tell Comparison and Fear that they are thieves and liars, grief leaves and joy takes over. I immerse myself in what Redmond is doing today. He’s so cute and cuddly. He’s doing amazing things, learning how to eat and drink on his own, getting stronger every day. He’s very vocal and alert. He adores his siblings and is happier when they’re around. He is a treasure. He isn’t colicky or unhappy, he sleeps great, and he smiles with his whole body.
Although I’m writing about it now, during our daily lives I rarely think about Down syndrome. He’s just my precious boy and we adore one another. I’ve had to focus on it more just because I had such a steep learning curve and I hate to be ignorant. I had to know what I was getting into and how to give him the best life possible. And for that precious mom whose “friend” chastised because she was not happy just to have a baby, I send all my love. Although a woman longing for a baby may not realize it, there are worse things than not having a baby at all. I have waited in the lobby of children’s hospitals and seen the families that go through there. I’ve seen the heartbreak of children who are severely deformed, unable to communicate at all, unable to do anything for themselves. What is Down syndrome in relation to the things I have seen? It’s NOTHING. It’s definitely a gift. But even with the gift, we are allowed to mourn the idea of what will never be.
Special needs parents – we swallow down our pride and grief, we stop concerning ourselves with petty things (will our child will be the best dressed or most athletic?). We push ourselves beyond our limits, going from doctors to specialists to therapists, learning about medical conditions and procedures we never wanted to understand. We try to find time to grocery shop, pick up the toys, and take a shower in between changing bandages or reinserting feeding tubes. We cry a little in private, and then we suck it up and give our children our best smile as we try one more time to get the baby to eat or sit up. We make the most of what we’ve been given, squeeze every ounce of good we can out of it, and try not to think too much about the unknown future. But we certainly grieve and there is nothing about that to apologize for.