Thursday, March 31, 2011

The importance of importance

Yesterday I took Micah up to Hope Haven, the Down Syndrome Clinic in Jacksonville.  He's the last of our crew to go this round (4 have already been) and it's always informational and really encouraging each time we go!  Micah was a ham, behaved well, stayed on task, did exactly as I would expect him to and more.  It's always nice to have the kids actually do well when they go to evaluations :)

This clinic is a 4 hour set of sessions with PT, OT, ST, and an educational session.  They do an evaluation then send us a report within a few weeks with all the information they got as well as suggestions to continue working on the child's strengths and to improve their weaker areas.  Yesterday I was especially focused on the educational piece, getting all the help I could to see what insight Laura Watts, the director of the center and mother of an adult son with Down syndrome, would be able to share with me about the kids' continued education and suggestions for the next season of their schooling.

After the clinic, I drove over to St. Augustine to go shopping a bit for things for the kids at the outlet center.  I ended up getting summery sandal-sneakers for several of the kids which will give them good support without making their feet super hot.  And... they're washable :)  Which makes them great for rainy spring and summer days as well.  I also picked up shirts for Easter and even a shirt for myself...

Then I had the pleasure of meeting up with my friend, R, who I've known since high school.  Though we never really hung out in school, we began having lunch regularly at our church about a year after Mike and I got married.  For the next three years we regularly had lunch once or twice a week with R when she was working in the church cafe or helping out with the school art class.  When Brianna was diagnosed with Down syndrome, R and her mom D were some of the first people that we wanted to share her diagnosis with.

R recently moved to a group home so she could have more activities and independence! She is doing great in her new surroundings and enjoyed water skiing, knee boarding, and tubing in a lake yesterday before going to a church dinner and Bible study.  They are keeping busy and she is thriving in it!

Last stop of the night (I did a lot of laps of driving!) was dinner with Kathy and Jen, two moms of little ones with Ds who I've communicated with via computer and phone for 5 years and have had the pleasure of meeting up with several times along the way as well.

Now, back to R... :)

R introduced Micah and I to the house parents and told them that Micah has Down syndrome.   He has Down syndrome "just like me, I have Down syndrome too."

That may seem like a simple statement, but to me, it was huge!  In the last 5 years I've seen a big change in R.  One of the main reasons (aside from wanting her to be able to be a part of our journey with Brianna) that we told R first is because she had, up to that time, been very resistant to any talk about Ds.  If the phrase came up, it was often met with anger or frustration from her.  To her, it was a negative thing... something not to be talked about.  A thing that made her different and that made her uncomfortable.  Something that she couldn't change or shape, but had a derogatory meaning.  The one thing holding her back from having the 'normal life' she already lived with her college age peers and her activities with the church and school.

Brianna was not "just another baby" at the church.  Though she, of course, was the world to us just like Kristopher was and each of our children after!  She also was born to two staff members...  Michael was on staff with Senior High and running that program and I was a children's minister for 5th and 6th graders.  Brianna was automatically 'known' by most of our church before she arrived and the medical difficulties she faced before we learned what her diagnosis were was something our entire church had been praying for.

Our reaction to Brianna's diagnosis of Down syndrome was pretty important.  Not just to us and our church family, but also-- I realize 5 years later-- to R.

Thankfully, God had used R to prepare us for that moment and to be very accepting of the diagnosis.  Though were concerned (which is a big understatement!) about Brianna's heart condition and need for open heart surgery, we were able to quickly put forward a positive foot with the rest of her diagnosis.

That doesn't mean that we didn't struggle with the "loss" of the child we "thought" we had.  Just like any major life-shift, we had to digest what this meant for Brianna and for our family.  We had to grieve the idea of a totally typical childhood and some of the expectations that we don't ever vocalize about a newborn, but innately are formed within our minds-- like the joy of one day seeing your child marry and have children.  That's not to say she wouldn't do those things, but my set of expectations needed a shift.  We needed to change from "of course" to "maybe."  We aren't people who like to set ourselves up to be disappointed, and holding an "of course" attitude in regards to a newborn with Down syndrome, well, it is setting yourself up for the possibility of disappointment whether intentionally or not.

There ARE some OF COURSE statements we did hold on to though:  OF COURSE your child will be beautiful, and you will love her, and she will learn how to talk and walk and be independent as much as possible.  OF COURSE she will make friends and be an active part of our family and community.  OF COURSE we will do any and everything possible to help her to achieve her own goals and push her to desire for those goals to be as large as she wants!

And so... to R, I believe our response-- and the response of our church-- was what she needed.  Within just a week of Brianna's diagnosis we were again having lunch with R when she went across the cafe and spoke with one of the other staff members.  "Did you know Brianna, Michael's baby, she has Down syndrome?  I have Down syndrome too."  We were shocked to hear it, but yes, she was talking about it!  Later that same day another church member came up to us and said "Um... I'm sorry to just ask this outright, but R is going around telling people that Brianna has Down syndrome.  Is that true?"  We laughed and said 'yes'.  It sure was...

There's another piece to all of this...  When D told R for us (because we didn't want to break down in tears and make it more difficult, after all, we were still adjusting to the idea and, well, you get the point), we were standing right there.  D knew R better than anyone, after all, she's her mom :).  D knew exactly the right words.  Words that I heard again yesterday when visiting with R.  "R, Brianna has Down syndrome, like you have Down syndrome.  And she needs a role model.  Will you be Brianna's role model?"

Yes, she would be!  She would be not just a role model to Brianna, but to Emma and Micah, and James, and now Aleksa (who I don't believe she's met).  Yesterday, R very proudly told her 'house parents' that she is Micah's and Brianna's role model :).

And now, getting back to where I was going with all of this (oops), here's the point:  R found importance in Brianna's diagnosis.  She found that the diagnosis or title wasn't something to be ashamed of, but something that (to her) a very special baby girl had, and a person that she wanted to be associated with.  It wasn't a title that brought distaste or one that made her different, but something that she had in common with a tiny person who held no negative stigma.

Not only that, the title of Down syndrome, and the conversation with her mom that day, gave R importance.  Regardless of any type of diagnosis or disability, there is something to be said about feeling important.  There is actually a lot of importance in FEELING important!

If you have a disability or a diagnosis which you think of and cringe, or you have days where you wish it didn't affect you... Maybe you have a child that struggles and feels distaste or blame toward their disability.  Maybe they or you feel different and wish it wasn't a part of life.

I challenge you to look one step further.  Find the importance.  What does that disability allow you to be, to do, to access... Who does it allow you to associate with or be like?  Is there someone you can mentor?  Someone that needs to hear your story?  Is there an organization that needs another set of hands or an advocate so you can share with other parents or kids that are walking the same road?

D and R have provided the life-experience to us that we didn't have yet on our own and we continue to learn from both of them as they share their walk and remember the times that we're going through with our kids. In that, R has also found importance in her diagnosis and in being a role model to our kids.  To her, it allowed her to accept that piece of herself which was locked up before.  To us, it allowed us to have someone to look up to and to have our kids look up to as well.

Where is your importance?  Have you discovered the gift in your diagnosis or your child's?

Life can be tough.  Tougher with added challenges that come with disabilities.  But looking for the silver lining, so to speak, can help to keep our own attitudes in check and... quite often... can help someone else in the process...


  1. I am so glad you posted this, Meredith! Loved getting together with you last night and hearing about the visit with your friend - but you know how it usually is when we all have kids in tow - not much time for meaningful, uninterrupted conversation, right? Sounds like you and R were brought together for a reason that benefited both of you in the end. Very cool :)

  2. Growing up can be difficult. I had parents who loved me, a good home, etc., but I still grew up knowing I was different in a way that wasn't easily definable. In retrospect, I realize that my siblings and I all hover in a grey area that isn't diagnosable as asperger's syndrome, but still holds a lot of the characteristics of that. It affected all of us in different ways, and made each of us feel alienated from other kids our age. I personally had difficulties with social cues, probably with appropriate behavior, organization, focus, anxiety and depression. Back in the 70's and 80's, there was no one to help kids like us to cope. It was seen as a character deficiency, something that was willful and bad. I had to figure out ways to cope by myself. The one really great thing about it all is that I can use my experiences to relate to and help my emotional and behavior disordered students through the maze of growing up. We know the same things, and that comforts and reassures them. It also helps to know that they aren't alone - they aren't the only ones dealing with it, and it's not happening because they are substandard people. They are beautiful and deserving of good things, and I can help them to believe that. Take a moment and explain to R. what a gift she is to your family and how her particular qualities are exactly what your kids need to see as they grow up. How wonderful for her to know what a valuable and valued resource she is to your family!

  3. This is so touching, Meredith. Amazing how God links us all together--Brianna was a help to Rachel, and Rachel will be a help to Brianna and your others. We all need each other.