*I have loved a couple great kids who had a Down Syndrome diagnosis. They have a special place in my heart. I’m glad to host Michelle and Amy’s thoughts on parenting a child with Down Syndrome as a way to celebrate Down Syndrome Awareness Month. These are kids worth celebrating. Part 1 can be read here.*
What would you say to a mom who just found out her child has DS?
Michelle: I would tell her that it’s hard. It’s hard, but it’s not the hardest thing that she’d ever have to do. She may feel like she can’t do it, but she can. It’s not something that will defeat a person unless they let it defeat them. It’s not the end of the world, although it may feel like it. It’s really only the beginning. I’m not much for sugar coating. There are endless appointments and possible surgeries and therapy out the wazoo, but there’s so much more than that. A child’s disability does not define them unless you as the parent make it so. Tullie is my child first. She’s mine. She’s a Bates. She has three brothers and a sister and she’s different than each of them, because she is unique. Just like the different personalities that each of my children have they are all individuals, and they are all mine. There’s so much to learn and so much that that sweet child will teach every single one of her siblings.
It’s easy to get bogged down with who the world says is acceptable and who has worth. Tullie has just as much worth as our other children. We’ll fight for her like we will for everyone else in our family.
I read a blog a while ago of a mom who had a child with DS and she said something lovely, “welcome to your beautiful journey”. If I was a new mom with a child with DS, I’m not sure how I would’ve responded reading it, because when Tullie first showed up, nothing seemed “beautiful”. It was like it was the end of winter before spring. The time when the snow was done, but nothing had bloomed yet and everything was still wet and brown and lifeless. As time went on, spring slowly came and crocuses’ were starting to bloom and it felt fresh. Spring gives us confidence. After a hard winter, we feel refreshed when spring comes. Sometimes we get so used to the change of seasons that we don’t notice it until we stop and see the little leaves that are punching out of the soil and it makes us realize that “beautiful” is coming. It doesn’t come quickly, but it comes. Sometimes all we can hope is that Jesus will bring the spring. He will provide and He gives us the strength we need through the winter months even though a lot of the time they are long, hard and exhausting.
Amy: I would want to validate her emotions and try to gently share that God is faithful and working everything out for our good, always. His grace and strength will be sufficient. I would try and describe how much we all love Evy, how our lives are better, richer for having her in it. But knowing that I’d be talking a language they haven’t learned yet. I would want to be constantly reassuring, validating, rinse, lather, repeat.
How can a church/family/friends best support the family of a child with DS?
Michelle: Support and love. I think that sometimes people don’t know what to do with people who are learning to adjust to life. Or grief. There’s a grief process when life changes so drastically. Especially when it’s unexpected. Life is different when you have a child with DS, especially if that child has a lot of medical issues. Meals, housecleaning, child care for other children is always helpful.
I do think though that listening and caring for people where they are at in their adjustment is important. Whether a parent found out prenatally or after birth of their child’s disability there is still a grief process. If they found out prenatally there is a grief process of acceptance, but once the child is born it puts things into real life and a whole other wave of grief and acceptance follows the birth. That’s okay, and it shouldn’t be judged by friends and family around them.
Some people mean well with their comments, but they can be hurtful. We can’t compare our children with typical children. They aren’t comparable. Kids with DS are on their own time table. Be careful with your words and comparisons of other children the same age. It’s something that the parent is struggling with already. It takes time to accept the “slowness” of milestones with a child with DS.
Be excited for the milestones no matter how small they are. We had a big family hoop-la when Tullie sat up independently. She was 11 months old. My mom was in town and we couldn’t stop talking about how happy we were that she was sitting up. It was a big deal. It was a lot of work for her. Those small milestones should be celebrated! They’re the first signs of spring!
Amy: This is the hardest question. Evy is still more of a baby than anything, sixteen months. I feel like I am giving marriage advice after our honeymoon. It’s kind of ridiculous. I think supporting Evy will get more complicated as time passes. The church has been very supportive, prayers, meals, baby showers, genuine love and concern. A dear mama at church even pumped extra breast milk for Evy. This blessed us beyond measure and gave Evy such a jump start, she was never sick for her first 6 months. Unheard of in large families, let alone immuno-compromised babies. Family has been very accepting of Evy as a reality. A few family members had some strange reactions to the complications of Evy’s pregnancy, and again we were called to comfort others, but once she was here she was absolutely adored. The older generations seem a little more tentative, but still loving and concerned, from a distance. Surprisingly the friends were the bigger issue. I am accountable for a decent sized portion of that, I have been frequently not awesome. Or regularly sucked, I use the terms interchangably. Some friends stepped back, faded away, not able to deal and some, mercifully rose to the occasion and loved us even though we were often unlovely. Relationships has been one of the most painful parts of this journey, but the Lord continues to be faithful to us. Never leaving or forsaking us, no matter how we have failed to perform or how much emotion we have just vomited all over friends’ shoes. Some days, this precious little one, who hardly ever fusses, even if her brother bashes her on the head, will scream in pain. Pain I can’t fix. Not even a little bit. It’s been know to make me crazy. Lots of grace required. When people use trite or uncareful religious words, sugar coat or minimize, it can communicate a need to get your act together. One of the most freeing things a friend has said to me was “I won’t tell you what you already know to be true about Jesus.” Usually we just need to hear “That sounds hard. I will pray for you.” I also really appreciate forthright questions. There is an awkward stage when first meeting people. You notice them looking at the baby a little longer. They are trying to figure out…I want to help them…but not embarrass them. I love it when new people just ask “when do DS kids walk?” “How is she affected?” I love questions! Except for the ones that make me need a crystal ball.
What are we missing out on as a society when we abort the majority of children who have a prenatal diagnosis of DS?
Michelle: When Tullie was born eight years ago (nearly 9), 80% of her peers weren’t here because of early diagnosis and prenatal testing and parents choosing to terminate the pregnancy based on the diagnosis. That statistic is nearly 90% of pregnancies are terminated now. It’s shocking really. And who knows how many of those children had an inaccurate diagnosis.
The issue makes me hot under the collar. Whether the child has Down Syndrome or a different disability it is simply selfish to have an abortion. You may say that it’s because you don’t want them to get teased and have a full life, but the heart of the matter is that it’s making your life harder and you don’t want to “deal with it.”
Every single person that I have met who has a child with Down Syndrome or another disability has never loved that child more fiercely. They are 110% committed to their kids. Once they show up, you’ll move heaven and earth to help them, because they are your kid.
Tullie is vibrant. She is loving. She is giving. She is full of life. She runs. She plays. She’s reading and writing and figuring her numbers. She is an active part of our family and she’s active with her friends. In her mind, nothing hinders her. She can do it all. The only people who will tell her she can’t do something, is our society. They are the only ones who don’t count her as worthy.
Even though she has a disability she is still made in the image of God. She is His child. Totally and fully. He created her just as He wanted.
With each child that is aborted we become more hardened. We lose diversity. We lose compassion. We lose tenacity and determination. We lose a lot of hugs and kisses. We lose servant hearts. We lose happy spirits. Mother Teresa said, “What we do is less than a drop in the ocean. But if it were missing, the ocean would lack something.” With each child with a disability or not we lose to abortion, we’re losing the make-up of our ocean.
Amy: Down syndrome, disabilities, abilities, personalities all add colors and layers and flavors to life. Why do we need salt in chocolate chip cookie dough? That always baffled me. But a layer of contrasting flavor makes every flavor sing. Our lives are like that. Some days we are the salt, some days the chocolate chips, always needed, all important, all working together to learn, help each other and ultimately glorify God. You can have a half decent cookie without the salt. But never an excellent one.
As for Evy, her given name was our prayer for her to be an asset to this world. Evangelista Is the feminine form of an evangelist “the bearer of Good news” and her middle name after the prophetess Jael, which means ‘to profit the beholder’ such a strong name for a daughter who will need the mercy of others, her whole life, to survive. She may never speak with words the Good news. She’ll not single handedly defeat an entire army set against the Lords people (Jael) But her existence is a victory. Her presence. Her unmeritousness all fly in the face of society’s schemes and charms.
How do you judge your “success” as the mom of a child with DS?
Michelle: My success. This is a hard question. Mostly because I feel like each day I’m holding on by the skin of my teeth and it’s only grace that carries me through to the end of the day.
I feel grateful that Tullie has siblings surrounding her. I also feel grateful that we don’t expect less of her then of our other children. She is expected to obey. To respond when she’s talked to. She expected to work hard and have good manners. She’s expected to be part of our family and things may take longer for her to accomplish a task, but if she argues or pushes back she will be disciplined like our other children.
It’s important to us that Tullie knows and learns discipline and rules. So many times adults with disabilities can have a double disability. When I say that I mean, that parents who haven’t disciplined their kiddos with a disability will make excuses for them, “they don’t understand” or “they can’t remember” etc. and when we do that we’re teaching them that the same rules don’t apply to them as to the other kids in the family. It’s unfair to the child with the disability and our other children. We want Tullie to know that there are consequences to her actions and that she’s a sinner, just like our other children. She needs to repent and apologize and she understands that. The world doesn’t revolve around her and she can’t get everything that she wants. There are rules and she needs to obey them. The expectation is that she’ll be a responsible adult with a knowledge of boundaries, expectations and consequences when she makes poor choices.
I think that kids with DS are born with a natural tenacious nature. They have to work harder at everything and they are determined to accomplish it, but I hope that with having high expectations for her she will be an even harder worker and accomplish her goals.
Amy: My success as Evy’s mom has nothing to do with her, or me, but with walking in wisdom this narrow path that the Lord has laid before me. Walking it only in His strength, never by my sight. By believing the Lord has hand picked me and this family as the perfect fit for Evy. Not based on our abilities, for at times we will fail Evy, I haven’t been a perfect mom to any of these kids. But God is the perfect father. The more I can point my kids to Him, the more they learn to seek Him, then my kids can be successful in whatever the Lord calls them to.