Today is the eighteenth anniversary of my son Christopher’s death, and I’ll be heading out to the graveyard later, likely by myself. I like it better there alone. But I thought this post may be appropriate for the day–about what to do when you get a diagnosis that something is wrong with your baby.
I shifted uncomfortably on the cot. The baby had been pushing on my ribs for over an hour as the technician kept trying to get a better view.
“It’s a boy,” she announced as my husband entered the cubicle holding our 15-month-old daughter. We were ecstatic, but I couldn’t figure out why she wouldn’t look me in the eye.
The next day I learned the answer. “I’m sorry, Sheila,” my doctor told me. “There’s something wrong with his heart.”
It’s hard to explain the panic you feel when you hear that something is wrong with your baby, even one who isn’t born yet. And that panic only worsened for us as, over the next few weeks, I endured a dizzying battery of tests. We learned our son had Down Syndrome and a very serious heart defect.
I experienced such intense fears during that time. Could I handle a sick child? What would this mean for my daughter? Would all my time be taken up in caring for my son? What would his future be like? And above all, would I have to watch him die?
As soon as we learn we are pregnant—and for many of us, even before—we start dreaming of what it will be like to hold the baby, to watch him grow, or to see her blossom. But for some of us, those dreams are shattered. The child we dreamt about isn’t coming. The one we have has something wrong.
The first few weeks can be the most difficult in your life as you struggle to cope with grief and fear, care for a new baby and perhaps even rearrange your life. Here are some steps to help you through this challenging time.
1. Nurture your marriage
An estimated 25% to 33% of marriages break up within a year of the birth of a handicapped child. That’s not a statistic you want to join. Resolve now, before you do anything else, that you will still be each other’s greatest priority. Speak and act kindly to one another. Give each other space to handle the grief differently, without passing judgment. You will need each other in the years ahead. Remember that if you walk through this valley together, your marriage can emerge stronger and more precious to you than you had ever thought possible.
2. Take your feelings to God
Cheryl Molenaar’s daughter Lindsay, now 12, was born with a chromosomal defect that has left her profoundly disabled and with the mental level of a one-year-old. Cheryl remembers feeling grief at the loss of all her hopes and dreams, mingled with intense frustration at not being able to ease her daughter’s suffering.
It’s only natural that these feelings lead to anger toward God. How could He let this happen? For Cheryl, the experience shook her faith. Yet through wrestling with God, Cheryl learned God will always carry you through. “Sometimes you can’t feel God,” she says, “But ask God to let you see Him, and He will show you Himself.”
My son Christopher died when he was 29 days old. Though I never received an answer why, I was given something better: a peace I cannot explain that could only have come from God. God is big enough to handle our questions, when we seek Him out and let Him in.
3. Seek early intervention
Paul and Judith Colley’s daughter Laura was born prematurely at 25 weeks. A year later she was diagnosed with hearing problems and possible developmental delay, so she was quickly fitted with a hearing aid. At two years of age her speech was slow and doctors were concerned with her development. Today, though, after years of speech therapy, she is above average on almost every scale. This child, whom they once thought might be permanently delayed, is flourishing. The reason is early intervention.
When you’re given a diagnosis for your child, the simple truth is that no one knows the potential he or she has. Certainly some children will have a harder time learning than others; but for many early stimulation can help. Ask your paediatrician to connect you with community resources or books that can guide you through the process.
4. Ask for help
No one likes to feel that they can’t cope. Yet for Cheryl, outside help saves her sanity and keeps her from the brink of exhaustion. Seek out help from friends, relatives, your church, and community resources. You’ve been given a big burden to carry, but God never meant for us to carry our burdens alone (Galatians 6:2).
We live in a society that values perfection. Having a baby who’s not perfect throws us through a loop and challenges everything we believe. Yet through that challenge, we will inevitably come to “taste” God more as He sustains us day by day. As Cheryl cares for Lindsay, she is constantly reminded that His “grace is made perfect in weakness”. Her child has taught her things about God no sermon ever could. And as she loves Lindsay, so protectively and fiercely, she gets a clearer picture of how God cherishes her.
If you’re dealing with disappointment and grief, Sheila’s book, How Big Is Your Umbrella?, can help. Read more here.
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I am terribly sorry for your loss.
The second of my five sons, Troy, is mentally and physically disabled. The doctors have never been able to give us a diagnosis because he fits a little of this and a little that. After 20 years, a diagnosis no longer seems important. He is as big as a 9 year old with the mentality of a 2 year old.
What can I say about the last 20 years? I have learned so much from my son about love ad compassion. He loves everyone unconditionally, but he seems to be drawn more to women. He has blessed the lives of so many.
My other sons have developed a compassion and understanding, too. Because of their brother they are learning things that cannot be taught under normal circumstances.
It hasn’t been easy, and it will continue to be scary and complicated. He will age out of the regular school system next year and be considered an adult with all of the complications that comes with that. We are trying to find a day program for him for next year, but funding is complicated, the facilities are full and the whole process is so depressing.
But I love this kid with a love I didn’t know I had. He can make me laugh and cry in the same minute. He has a beautiful smile and a laugh that is contagious. I wouldn’t change him for the world.
We have challenges ahead, but I no longer ask why did this happen to us but instead I am so happy he happened FOR us.
Interestingly when I was pregnant with my third son, I was told after a routine sonogram that he had some things that were indicative of Down Syndrome. One of the things found was nuchal thickening at the base of his neck and a cyst in his brain. The doctor said when found together it is always Down Syndrome.
Troy was only three at the time ,and I was still learning and dealing with the uncertainty of his issues. I did not feel that I was able to handle two babies with medical issues. I cried out to God for healing. We were put on many prayer chains, also. To make a long story somewhat shorter, a later sonogram showed no signs of the cyst. My third son Robbie is perfectly healthy and will graduate high school this spring.
What I am still saddened by is the number of people, doctors and family alike, who thought I should end the pregnancy after the diagnosis, telling me that I had to think of my other children. It was an option that never entered my mind.
Having a child who falls under the title of “special needs” can be scary, complicated, uncertain, but also so amazing if we just allow the blessing to flow.
That is so beautiful, 5sonz. Thank you for sharing your story! And isn’t it amazing how the “least of these” can become such a huge blessing in our lives?
Thank you for sharing your grief in order to help others. I am the parent of a child with a physical disability. She was born very early and I was surprised to find that I grieved over the loss of that fantasy of a great pregnancy and a perfect start to being a mom. I would cry while watching sappy commercials and sentimental movies about pregnancies and babies (I never told anyone this before). We actually weathered the hospitalization and her later diagnosis very well. I learned what it meant for God to give me the peace that passes all understanding. Over time, we came to embrace the new normal and our daughter is just our daughter and anyone implying to her that she is “special” or particularly noble is likely to see a classic eye roll. Life just goes on. What else are you going to do?
First let me say, even this many years later, I’m sorry for your loss, and since I haven’t experienced anything that truly painful I won’t say any of the things that can be meant to help but are just hurtful. Prayers for you on such a hard day.
Oh how I wish I could connect your friend with my mom. My little sister (now 20, almost 21) is missing a small piece of the 8th chromosome. At the time, she was one of very very very very few who had this particular issue. She also had 3 holes in her heart and some other physical issues, but the big one was the chromosome. She’s very mentally and physically disabled. She’s still in diapers even now (although at her group home they’re working on that slowly) and doesn’t really talk. It is very much like having a 2 year old that’s 4’10”. Any talking is simple things like “ma-ma-ma” (Mom) or “Ka-ka-ka” (Me, Katie), etc. The rest of her communication is all signs, but they’re not the real “Sign Language” It’s just stuff she makes up as she goes along, and we have to figure out what she’s talking about. She’s very smart though for the disability she has. She also cannot walk without someone holding her up, and her gait is very awkward.
All of that to say, I’ve seen how hard it is. And I’ve especially seen how hard it is when you have absolutely no support. My mom’s ex husband wouldn’t do anything useful (but that’s a whole other post….) so Mom was pretty much 100% on her own except for school and such.
Now that Michaela is in a group home, she’s flourishing, but it still breaks Mom’s heart into little pieces to have taken her there. She has to constantly remind herself (or be told by us) that no, she did not “throw her away”. This was the best thing for Michaela, and for Mom. She had gotten so big and heavy that Mom physically could not handle her, and because she was a single parent and there were no daycares that could handle a child with the disabilities she has, Mom couldn’t even find a job.
I would love to get Mom and your friend together since the issues seem so similar, especially since Mom’s been through the older ages and into adulthood already. But you’re so right that help and support outside the home is so so so important!!
My heart goes out to you, wishing you peace today. May you be surrounded by those you love.
Your words are so timely… thank you for sharing this grief so that others can be comforted too.
I am so sorry for your loss. I too have lost a child. My situation was different but nonetheless, I was difficult. I had triplets. We lost little Cynthia Suzanne. I still miss her. She would be 28 years old. I have found it difficult to talk to those who have lost a child from a single birth due to the fact that I was blessed to have 2 healthy girls. I can’t imagine not have a child to take home. My hurt is the same, yet different. She’s with Jesus and I’ll see her someday. My granddaughter is named after her. Can’t wait to see her!
Praying for you today as you remember your sweet precious boy!
This post was so timely for me! We just got news on Tuesday that our baby (I’m 22.5 weeks pregnant with our 4th) may have Down’s syndrome. These past couple days I’ve just felt so fearful of the unknown & all the what ifs. But God has been so faithful! The verse of the day on my phone the day of the ultrasound was, “Be still & know that I am God….”Psalm 46:10. And yesterday was “Come to me, all you who labor and are heavy laden and I will give you rest…” Matthew 11:28. Then today I go to your blog & see the heading! God is so amazing, He’s so good! Thank you for sharing your story and tips. It really was so good for me to read this!
Blessings to you & your family!
B- I cannot imagine the mix of emotions you are feeling, but after reading this I will be praying for you. I work in early intervention and have worked with many children who have Down Syndrome. They are such a joy. When you feel ready, please, please contact early intervention in your state, as well as any Down Syndrome support organizations nearby. In most cases early intervention for children through age 3 is either free to families or provided on a sliding cost scale, and it makes a huge difference in maximizing the potential for kiddos. You should also (when you are ready) check out the blog and Facebook page titled Noah’s Dad- it is the journey of the father of a child with Down Syndrome.
I’m not sure if there is a way for you to find out my e-mail address, but I’ll try to check back here and if and only if you are interested we can figure out how to get into more direct contact.
Thank you for sharing your story. We knew at 20 weeks into our pregnancy, that our son would only have half a heart. Three open heart surgeries and six years later, he’s thriving! But it has really been hard on our marriage, in particular my husband’s health and faith. We’re still struggling with it. We had a miracle, but it is still painful and hurtful. We are blessed beyond measure. It’s amazing how two parents can hear the same thing and take it so differently.
My perspective on this is a little different, because I AM that child. 🙂 I’m so thankful that my parents clung to the Lord in the early days as they learned about my issues, and that He was faithful and walked with them each day. 🙂 I’m now almost 30, and my parents celebrated 32 years of marriage a few months ago. I’m sure it wasn’t easy for them, but I’m so glad they made it through. 🙂
I’m so sorry for your loss. Thank you for sharing this, and may your little boy’s memory be a blessing.