I'm getting ready to go to a workshop today called "Instructional Strategies for Students with Down Syndrome" put on by a gal that many of the local parents use to teach their children to read, Terry Brown. I'll probably write all about it tonight or tomorrow, but I happened upon this blog this morning and I just had to share it. I'm blessed because most of the people in my life are much more understanding than what Jenny describes here, but there are a few people that don't get it and probably never will. Thank you to all that do get it and I greatly appreciate your support!
The Down Syndrome Package
Every time Russell has a new appointment or something it makes me kind of melancholy for the few days following it. Not depressed or anything, just kind of quiet....and I find I need to just be alone for a while. I think about Down syndrome and everything about it...
Dealing with Down syndrome is not what people think it is like. You do not start off being sad and scared about it and then one day just wake up and are over it and feel fine about things. You don't just magically accept it and move on. We do however move forward because we love our children, we do accept the fact that our kids have Ds because it is a part of them and makes them who they are...so really how can we not accept it??
But Down syndrome is like this package...Its all bundled up neatly in one and to a passerby looks like a single object, one package...BUT...to the person who has to open that package and see whats inside it is something entirely different....because Down syndrome is not one simple small package....You open that package and inside are a million different compartments...all of which you have to open at some point or another whether you like it or not....compartments like....Heart tests/surgery...Kidney functions...Blood tests...Thyroid...Leukemia...Hearing loss...Eye sight...Physical therapy...Occupational therapy...and the list just goes on and on and on. One thing after another...you can open one single compartment and that compartment then again opens up into many more...Like taking your child to have one tests done, if those tests don't go well then you have a chain reaction set off of many, many, more follow up appointments and referrals and tests.
But us Moms who live this daily cope the best we can. I think some of us feel like our friends or family members just don't understand our feelings about Down syndrome...many of us feel judged because we have not just been "OK" with things, we haven't gotten "over it" yet...We talk about it alot, we worry about it alot, write about it alot, research it alot, obsess about it alot....because its hard not to. Because we are afraid we will miss something along the way that could have helped our child more, we are scared to not know everything all at once. What we need is for people to understand Down syndrome is not just cut and dry. It is not just one single package...it branches out into many different areas in our lives and affects our children and their lives in many different ways. We can have a moment where we catch our breaths, only to have that breath kicked out of us during the next round of appointments, when something new pops up. I know when I talk or write about Down syndrome I often contradict what I have written in a previous post or when talking make statements that conflict with what I have said in the past...because my feelings about Down syndrome are not set in stone, they never will be. Because my feelings and thoughts about it change from day to day, appointment to appointment....and that's just the way it is. I don't think I will ever have ONE thought or ONE emotion when it comes to Down syndrome...
But even with all that said I am grateful the Down syndrome I see every day is in such a cute little package, no matter what compartments I have to open!
(I've replaced Jenny's adorable photo of her Russell with my little Sweet Pea)