Receiving a Down Syndrome Diagnosis

No two stories are alike.

Your story of your child's Down Syndrome diagnosis is different than ours, and ours is different than yours. But we share something, and that is the moment we realized that life would be a bit different than we had thought.

Perhaps you're reading this from a hospital having just received a diagnosis for your child. Maybe you're sitting in your car after a prenatal appointment. Maybe you're crying your eyes out. Perhaps you're terrified. Maybe you've lived enough to know a very special person with Down Syndrome and you're smiling. Either way, you realize life isn't going to be exactly as you thought it would be.

One in 700 — and those odds aren't very high. If you're anything like me it never crossed your mind it could be you. We were low risk. In every category. You live life a tad differently when you know that low odds are actually someone, and sometimes someone is you.

Our diagnosis with Hadassah was far from picture perfect. It was overwhelming, and honestly could have been so much better. I know beautiful stories. Ours was not. A note for perhaps any other non-medical mama who might not know — Down Syndrome is Trisomy 21. It helps a lot to know what your child actually has in layman's terms (i.e. the really sweet girl you know with Down Syndrome — she can come to mind instead of a clinical word you've never heard before. Because I heard "scary condition that probably means my four pound fourteen ounce baby girl is probably going to die.") If I could see Hadassah now I am not sure I would have cried at all. But somewhere between my post-emergency C-section shakes, my husband running on about four hours of sleep in the last two days, the doctor dropping a diagnosis we had never heard of before, and begging her to write it down so I could Google it — you get the picture. I cried a lot. Mostly over what I didn't know and concern for Hadassah living through that first night. But that night is not what I want to leave you with. Today I want to offer you more — information, understanding, and encouragement that I wish I had that first night.

What I want to say to you is this: It will be ok. It might not feel like it, and you may have some challenging days. But it will be ok. You will be ok. Your family will be ok. Press into Jesus. He doesn't turn away when you have a pity party and wonder why. Don't turn from Him. Turn to Him. He loves your precious child and He chose you to love them too. You are the best mom, the best dad, the best family for this little doll.

Down Syndrome feels so connecting and so broad all at once. Some families face some really big health challenges. Some families do not. We fall somewhere in the middle. Hadassah spent five days in the NICU, had a hole in her heart that closed on its own, and has spent time in the hospital with pneumonia. She's floppy (affectionately so) and she's DS cute as a button. Her palate is high so you might not understand everything she says at seven. She slips away and puts things in her mouth she shouldn't. She wears the same size shoes as her brother who is three, and her sense of humor is more advanced than mine. 😂

She is every bit as much of a unique individual as each of our boys. And your baby is too. You'll get through whatever it is. Heart, low thyroid, glasses, all of it. You'll take it one moment at a time. One step at a time. One precious little kiss and sometimes a tear or two. God was there yesterday, He's with you today, and He will be there for every tomorrow.

I'll be painfully honest. There are still some things about Down Syndrome that make me sad. I remember saying to a dear friend shortly after Hadassah was born that I wasn't sure if I should let Hadassah play with dolls. Would that be cruel? She will likely never have a baby of her own. If I let myself dwell too far in the future I can start crying. Today. Right now. Seven years in I can still start crying if I borrow trouble from the years ahead.

I wish I knew the right answer. I want to tell you, "Don't do it." As the Bible says, each day has enough trouble of its own. Don't start borrowing trouble that isn't yours for the day. Most days that is exactly what I do. Why let the future steal the joy of the present? But sometimes you have to let your mind go through the troubles. And then you take them and you give them to the Lord. You choose that you'll trust God with everything you can't control — every single thing about the journey of Down Syndrome that is hard.

We thought Hadassah was the caboose of the family. But praise the Lord, His plans are better than ours! A little brother has been one of the very best things for Hadassah. When I found out I was pregnant with Delta we had to confront another area that was kind of hard. He would start out a baby and quickly surpass Hadassah with his ability. Hadassah and Delta are about four years apart. Physically, he surpassed her in many things like jumping and running before he was two. Mentally, on many things, he is surpassing her almost daily at three. But you know what? This was FAR more bothersome to think about than it has been to live through. It's honestly perfectly fine to live through. They're adorable together. I'm trying to settle on what to call them right now. The balance bike club? Our preschoolers? Any day I guess we'll get asked if they're twins. It's so fun and so sweet. One day sooner than later I'll realize he's in the next phase and precious Hadassah isn't. But guess what? That's ok. We love her, and oh my, she has made us laugh! She loves Jesus and she lives and acts out Bible stories every day. We love her. She loves us. She regularly tells Chad and I, "I love you, I love both of you!" She has brought fun and joy to our family in a way that is hard to describe. I wish every family could have that. Some of the clichés about Down Syndrome are just true. When you read things like "the lucky few" or "downright blessed" or "extra special" — it's true. It really is.

Will you visit the doctor more? Yep, probably so.Will you meet people you wouldn't have met otherwise? Yep, probably so! I love, love, love this — most of all the mamas of adults with Down Syndrome who stop us at the store or find us at the hockey rink. I hope the Lord brings those ladies into your path too. It's so sweet. Instant friends.

Down Syndrome can become your identity, but it doesn't have to. You choose how much you put your family into the world of special needs. You choose. Choose life for your baby and you choose every detail from there. Don't be bullied by doctors, community, or professionals. On any front. You don't make decisions because other people want you to. You don't put anything into your baby you don't want to.

When it comes to raising your child, you decide. Use every bit of wisdom and common sense God gave you to do the best that you can. Do you have to have an ILP, send your child to government-funded preschool, or enroll in every therapy? Nope. You don't. Don't forget it. If you want resources for your child there is a whole lot that is out there. But if you want to just raise your child — guess what? You get to! We homeschool. Yep. Hadassah too. Even for "therapy."

I'm not against intervention and I can't promise you that we will positively never use any help that is out there. But we only will if we feel like the Lord wants us to and we choose that it is the best thing for Hadassah. You don't have to do it because it's what people with kids with special needs do. Make your own decisions. Don't be bullied. During your pregnancy, during your life. God created you to stand up for your child and for yourself. If you're dealing with bad medical professionals, kindly fire them. If you're dealing with nasty things in society, get away from it.

Proverbs 31:8-9 — "Speak up for those who cannot speak for themselves, for the rights of all who are destitute. Speak up and judge fairly; defend the rights of the poor and needy."

You are the voice for the voiceless. It might be several years before your child has a voice that can be understood. It may be that their whole life they will need your voice to speak up for them. You will. You can do it with the Lord's help — kindly, with both firmness and love. With class and a dose of "don't mess with me or my kid."

I want to share some encouragement with you as you face a different life than you imagined. I don't say these lightly or just to cheer you up. I say them having lived with a child who has Down Syndrome for seven and a half years.

1. Down Syndrome doesn't define you, your child, or your family.

2. For everything that feels hard or challenging there is an equal or greater blessing that comes from this.

You had a life before Down Syndrome rocked your world and you'll have one after that includes it. My husband has advanced in his career, we had another child who doesn't have DS, we've moved and sold and bought a house, moved to a new town, and we started Lamp and Light — all since Hadassah was born. Your life will go on, perfectly wonderful, as the Lord wills, with an extra chromosome and all.

If you learned about Down Syndrome at the birth of your child — hug and kiss them! Congratulations and welcome to a downright, extra amazing life!

If you learned about Down Syndrome prenatally — buy the cutest outfit you can find for your little peanut, smile even if you cry, and count down the days until you get to hug and kiss your precious baby. Learn, but don't borrow trouble from tomorrow.

God is faithful and He never leaves us or forsakes us. That is true with or without Down Syndrome.

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