I have a lot of words today.
I’ve put together 21 things I’ve learned and observations about being the mother of child with Down syndrome. I’ve only been doing this for a year so far so I’m sure I still have tons to learn and I’m interested in seeing how my views change and grow in future years. But as of right now, this is where I am.
- Having a child with Down syndrome is so easy.
- Having a child with Down syndrome is so hard.
- How I reconcile numbers 1 and 2, I don’t know. But they are both true.
- In the beginning, I felt broken and lived most of my days in denial to avoid dealing with it. Other moms who had been where I was said that it would eventually be okay. That I would be okay. They made me angry because I didn’t believe it would be that way for me. I thought that I would be the eternally broken mother that would never be able to accept what was and that I would fail Lanie because of that.
- They were right though. Everything is okay. Really okay.
- But I’m still afraid I am going to fail her.
- I’ve learned that a baby with Down syndrome is just a baby. She eats and poops and has opinions about things. She giggles and plays with toys and rambles on about nonsense in her baby babble talk. She loves her daddy and her siblings and vanilla icing. She grows and meets milestones and is always learning new things. She cries when she doesn’t get her way. She dances when she’s happy.
- I have learned that many mothers of children with Down syndrome can be sensitive and snarky about what you ask and how you ask it and what order the words are in and people first language, people! It’s too hard for me to remember all the rules and I have a child with Down syndrome! I get why people are hesitant and uncomfortable to ask about our kids.
- I am really okay with people asking me questions about Lanie’s Down syndrome.
- Lanie has to work hard at so many things and everything has to be therapy. I knew this but didn’t understand it. Most babies learn things in a natural pattern with no need for much encouragement but with Lanie, we have to make her work for it, reach further, try harder. Simple things like getting a toy that’s a few inches out of her reach take every bit of effort she has and she often fails. It makes me sad to know this will be her whole life.
- But unconditional love, forgiveness, generosity, joyfulness and optimism are things likely to come naturally to her thanks to that extra chromosome. If only these attributes were valued more in our society.
- Parents of children with Down syndrome (me!) are unbelievably proud of their kids. We want to talk about them and show them off and celebrate every little thing they do because they are amazing and you won’t understand this unless you have a child with Down syndrome. You’ll just have to trust me. Amazing.
- Lanie has numerous therapists. Most of them live right here in our house and are under the age of 18. It’s really cool the way my other kids love her and play with her and work with her. They are so encouraging.
- Knowing what I know now, there is nothing I could go back and tell myself that would make any difference in how I felt and handled the news that Lanie was likely to be born with Down syndrome. I had to feel what I felt to learn what I’ve learned to grow as much as I’ve grown to get where I am now.
- Having a baby with Down syndrome slows everything down. It’s such a blessing to get to enjoy each stage of babyhood just a little bit longer than I did with my typical babies.
- But, also, I get discouraged by this more than I’d like to admit.
- I want to buy all the therapy things. Anything that Lanie’s therapists have in their rooms I want to buy for her. It’s not realistic but it doesn’t stop me from trying.
- People are sometimes uncomfortable around me now. I know they don’t mean anything by it, and it isn’t terribly visible, but I can feel it in all its heaviness none-the-less.
- Having a child with Down syndrome can be very lonely.
- God has spent many years preparing me for this. Even though it took a long time for me to accept that Lanie had Down syndrome, looking back I can see that before she was even a thought, God was already teaching me many things to prepare me for her.
- And it’s a better place since she’s come along.
And if you have run across this page because you are just starting this journey and are searching for help, this is the best I can offer you:
Be patient with yourself. It takes time to get through the shock. It is an emotional rollercoaster and, for me, it didn’t matter how positive anybody was about Lanie’s diagnosis, I just had to let myself feel those emotions as they came. After a while, they didn’t come as frequently and joy has now replaced any sadness, for the most part. You may not be ready to hear this yet so just put this in your pocket for when the roller coaster slows down: Someday soon it will be okay. You will be okay.
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