Down Syndrome Doesn’t Rule Our Lives Anymore

I still remember every single thing about all the worries and fears I had when Jessie was a newborn. Thankfully, most of the things I was concerned with then, aren’t ongoing concerns for me now. I can hardly believe that she’s 15 now.

I wrote this letter when Jessie was 3, for our local Down syndrome group (F.R.I.E.N.D.S.) to be used in informational packets for new parents of a child with Down syndrome.  I can remember so very clearly those first moments, the first days in the hospital.  Watching intently, worriedly, for signs of heart trouble or intestinal blockage.

I remember being concerned for how Down syndrome was going to affect my older (then 5 and 7) children.  Since my prior knowledge of DS was zero, I genuinely didn’t know if Jessie would feed herself (silly, I know now) or if we would be more confined to home, impacting Jordan and Evan’s ability to participate in their activities.  As I began to learn about Down syndrome, some of my worst long term fears were quickly put to rest.

Although Jessie did indeed have 2 heart defects (VSD and ASD) and had open heart surgery at 3 months old, her heart has been completely healthy since then.  She has had some Down syndrome related health issues, and has a lesser immune system than the average person, but she doesn’t have anything serious going on healthwise.  For that we are very, very thankful.

I do realize that our everyday is affected by Down syndrome; but I don’t worry about Down syndrome all that much anymore.  We have made adjustments that I don’t even think about much.

Jessie is on a swim team and takes gymnastics, both of which are Special Olympic sports.  She plays Miracle League baseball. She is in a weekly special needs ballet and tap dance class. She attends a couple of morning day-time camps in the summer. She bowls, attends dances and went to the Prom last year.

When my other kids were 15, it wasn’t Special Olympics, but I was driving them to all kinds of activities too.  The difference, is when they turned 16, they started driving themselves and I will continue to taxi Jessie.  Being Jessie’s chauffeur gives me lots of opportunities to socialize with other moms whose kids have special needs, and that’s a really good thing.

Jessie and big brother, Evan, at this year’s Special Olympics Track and Field Day.

Thankfully, I have a husband that has always prioritized, and been willing to make the necessary sacrifices for me to be home with the kids. Jessie benefits greatly from the physical and social activities, so I’m glad I’m able to be available to let her participate.  Jay had hoped (before DS was in the equation) that I would one day return to work.  One day several years ago I remember he looked at me and said, “You’re not ever going back to work, are you?”  No, honey, I hope not. Our family needs for me to make a part time income.  It is our hope now that this little blog, will, in time produce a part time income for our family.

My girl and me on the balcony of our fabulous hotel in Orlando, FL, when we attended the NDSC (National Down Syndrome Congress) conference this year.  She and Jay enjoyed chillin’ at the hotel and pool while I attended classes.
Sometimes, she is just a TYPICAL TEENAGER 🙂

From newborn to 6 years old or so, Jessie had ALL the therapies.  Scheduling in all the PT, OT and speech while we had (and homeschooled!) two other kids, that DID rule our lives for a season.  Last year Jessie had physical therapy for a few months and we may pick that up again from time to time.  She has more significant balance issues than I see in most kids with DS.  Even so, now my “big kids” as I called them for the longest time, now my “grown” kids, are doing their own things so it doesn’t seem such a big deal when Jessie needs something like that.

There were some difficult times in those early years.  Sometimes other children didn’t accept Jessie and sometimes new goals just seemed so hard to achieve.  They were a mix of unbelievable blessing and sometimes momentary heartbreak.

Jessie has the sweetest relationship with both her siblings.  She is good for them and they are good to and good for her.  I couldn’t wish for anything better.  I can’t even begin to imagine who any of us would have been without having Jessie as part of our family.  In good ways and hard ways, she has helped grow each of us into the people God intended for us to be.

Jessie grows more and more independent as time goes on.  We are always working toward some type of goal of either personal independence or on housekeeping chores that she needs to know how to do.  I posted about chores and routines we’re working on here.  I know that she will continue to do more and more for herself.  Even so, I think its most likely that she will always live with us.  I am really okay with that.  There is such focus in the Down syndrome community right now for people with Down syndrome to live independently (as in not with their families) that I don’t completely understand.  From what I have seen, most of those with DS that live separately from their families, they need and receive support–it just comes from other adults–not from their family.  Unless it becomes important to Jessie to be independent from us, I don’t know why we would want other people to be her support system rather than those of us who know and love her best.  That’s a deep and controversial subject 🙂  I homeschooled my typical children till they graduated high school.  So, it’s probably not surprising I feel that way.

All of those things above, they don’t seem all that worrisome to me.  Many things about our every day life are impacted by the fact that Jessie has Down syndrome, it just doesn’t seem like such a huge deal most of the time anymore.  We are in a “sweet spot”. There are situations that occur that are temporarily upsetting, but for the most part our lives just go on, making the necessary accommodations and keepin’ on keepin’ on.  It’s a good life we have.

Jessie loves that her dad is assistant coach for her baseball team. He hams it up and acts a fool and I love him even more for it.

The worry that continues to rock my world and causes me to pray often is worrying about Jessie if something happens to Jay and me.  I think about that a lot.  I struggle with living in a place of unhealthy fear. I know for sure that her siblings would take good care of her, but they aren’t her parents.  I don’t want that responsibility for them, or the loss of her parents for her.  That is the one thing where she is concerned that I have to continually recommit to God.  I could drive myself pretty crazy with that one.  Jay says that would be a short ride 🙂

Down syndrome affects every cell in Jessie’s body.  That for sure changes some things.  We make accommodations.  We make adjustments. But on most days Down syndrome is just kinda normal to us now.  It doesn’t rule our world anymore.

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