Re-grieving

They say that when you have a child with a disability, you must grieve the loss of the “normal” child you expected to have. I did this for a few days when I first found out through amniocentesis that my unborn baby would have Down syndrome. After that, I was as eager as any mother to give birth to a new baby. And her birth day was lovely and exciting and “normal.”

As I’ve adjusted expectations over the years and figured out at different stages what she has needed to aid her in developing and growing and achieving her potential, I’ve mostly rolled with the punches. But even as she walked and talked much later than my older daughter and did lots of things her very own way and at her own speed, I was mostly unconcerned. And she was so CUTE, and everyone she was around adored her.

Here she is at the high school, just a few days after starting.
Here she is at the high school, just a few days after starting.

I didn’t anticipate the interesting dilemmas that would face me as she reached adolescence and age out of elementary school. I certainly hadn’t given much thought to puberty (wha??!). Now, as of a few weeks ago, she is a freshman in high school. Just having her enter high school gave me a few little late aftershocks of grief; my oldest is a senior, and I’m right in the midst of being thrilled and excited for her and everything that’s ahead while simultaneously being struck smack in the chest with loss knowing she’ll be leaving home. I’m reflecting on the weeks three years ago, seemingly just yesterday, when SHE started high school and had all these new adventures and experiences awaiting her. How could my talented, sweet, fun little bird now be so close to flying out of our cozy nest?

So you see the stark contrast in experiences, in feelings, I’m facing as my second-born enters high school. She has a very different future ahead of her, not bad, but just different. It’s one I am unsure of, that is not nearly as clear as that of my oldest, because it’s not a path I’ve already forged myself.

Yesterday I had the yearly IEP (individualized education plan) meeting with the teachers and other interested parties at the school. But this time felt so different than every single IEP I’ve attended for the past 15 years. I was struck again by how far behind she is academically, that given her abilities, she simply will not graduate high school with a diploma, will not master algebra, even, which I’m informed is the “lowest” math class they have available at the high school. We still struggle with simple addition. But that wasn’t too surprising; I hadn’t really expected her to “graduate;” she can receive a certificate of completion, though, and that was an outcome I was already aware of.

No, what cut to the core was hearing that the classes she’s in right now are probably not where she needs to be, not because they’re too difficult academically (even though they’re the really basic versions geared for those who need extra help) but because they still are not attended by her true peers. The kids in these classes have struggles, but they perceive my sweet little girl as weaker, as a target, and they tease her. She’s on the outside. And I HAD NO IDEA. Sure, it’s only a few weeks in, and I imagine the teachers were just waiting to broach this topic at this IEP meeting, but knowing that my daughter has been treated just a little badly by classmates BROKE MY HEART.

(I did find out about another option for her class-wise that will probably be the better place for her when it comes to both academics and peers/potential friends, and I am going to look into it, visit, probably switch her, but that’s another story.)

I got through the rest of that meeting, signed paperwork, listened some more, asked questions, and considered, but I was really just hoping it would end so I could leave and not burst into tears there in the classroom. I came home and grieved for a few hours. Even as my oldest went to her band rehearsal and attended an open house on college options and scholarships and did all the kinds of things I did 25 years ago myself, I grieved that my second-born would not do these same things.

Did I think I’d already accepted that outcome? Yes, indeed. But it just started becoming reality, and it was such a stark contrast. I still am unsure of exactly what my daughter will do; she probably will eventually leave home and live on her own, with others in an apartment or in a group place that’s fun and friendly and warm; she will most likely have a job that’s simple for her to do that she enjoys. But it’s different. And will she always be able to find a place where she has peers, where she can make friends who are like her? Because right now that hasn’t been happening these past weeks. Will I miss something again in the future where she’s being teased or not fitting in? I can’t bear to think of it.

Sometimes grief comes anew and we must revisit what we thought we’d already “dealt with.” We must adjust expectations again and face the reality we could only see through the hazy, murky lens of an uncertain future. And it’s OK to do so. As I grieve, I know I will come out of it with clearer vision and a renewed determination to help forge a happy, workable life for my second child. No matter what, I do know that she will be happy and will make others around her happy as well. She’s already done that for 15 years.

Home life Life with Down syndrome

lifeandlims View All →

I'm a book reviewer, editor, and writer with four daughters and tons of projects always keeping me hopping. I blog at Life and Lims and run the book review site Rated Reads.

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