Thankful That We Are Not Alone: Melissa's Realization

Melissa is another guest I was blessed to spotlight during last year's Thanksgiving Project HERE and I am pleased as punch to have her on again this year!  I so enjoy her blog, Garden of my Heart.  Her blog is always honest, real, and beautifully written!  I loved re-reading her spot from last year and hear how her heart is growing along with her beautiful Rowenna!

Recently, we attended a Football and Cheese Ball party at a friend’s house. There were 5 kids there, all age 3 or younger. They tore the place up – in a good way – with their unbridled enthusiasm. They laughed and shouted and got into everything. The dads watched football, the moms talked.

It was a delightful fall afternoon and when we got home my cheeks hurt from all the smiling. Hubby reported he had a great conversation with the dads, and my daughter was sound asleep, exhausted from her play date.

Throughout it all, I couldn’t help but notice the ease among the group. The conversation flowed and the laughter was easy. And Down syndrome only came up briefly, despite the fact that all our kids sport that extra chromosome.

I am thankful to have this beautiful group of women to count as friends. I am thankful no one says anything about the milestones my daughter hasn’t met. I am thankful that they recognize and praise the things in her that I am so proud of – that she will eat anything, that she is curious, that she gives kisses. They see Rowenna.

Now for the soul-baring part of all this. It took until I sat down to write this entry to realize that - for the first time ever - I am thankful for Down syndrome.

I never would have met this group of women if my daughter hadn’t come with an extra chromosome. I never would have taken the time to put Rowenna in a playgroup, and I’m fairly certain I wouldn’t have had such an intense need for the support of other moms. Certainly I would have made other momma friends, but this is different than I expected.

These women have become sisters and I can no longer imagine life without their kindness, laughter, and support. We rally around each other when our littles need medical attention and we drag each other out for lunch or dinner when someone is having a bad day.

But best of all - the thing for which I am most grateful – there’s no explaining between us. When someone’s child needs a sensory break, it just happens, no questions asked, no odd silences. When a mom breaks out the thickener so her child can have something to drink, there’s no explanation. When someone’s child signs something, we all know enough signs to be able to respond.

We get it. We get what it means to live this life, challenges and joys and all. We don’t explain, we don’t apologize, we don’t worry.

So today I am so very thankful to be surrounded by these beautiful mommas, and I am thankful for this lesson learned: to see that there are things to be grateful for when it comes to Down syndrome.

I am thankful I am not alone.

31 for 21: #27 Hey, Are You Talking to Me?

No, seriously, is she talking to me? 

Yes, and she just told you a lot of things that's she been doing recently.  And is expecting you to answer, now...really.

*SIGH*

It is interesting that I friend of mine should decide to 'fess up about her biggest darkest fears today over at Chronicles of Ellie Bellie Bear.

It is very similar to the fears that have been growing over here.  In a nutshell, she is worried that her Bear won't ever talk and it will shrink her future. 

Um, Yuh.  Feeling you, Anna.

My advice that I posted up in response, was this:
"Talk about everything. Be your own life narrator. Until it makes you bonkers. Elise didn't even start babbling until she was 3, or attempt words until she was 4 and 5...she's still super delayed, but has progressed terrifically over the last 3 years.... Trust me, I SO understand!!!!!"

When Elise was little, I read an article talking about the hypothetical Einstein Syndrome.  It sounded like good advice.  I felt encouraged and decided to act on the theory...within reason.  I believed with reasonable intervention, my child would be able to hang on by her fingernails and wouldn't get too far behind, despite her diagnosis.  That if I believed she could do it and worked with her tirelessly, she could.

Fast forward a few years.  Despite intense, consistent intervention, therapies, and LOTS of parental involvement...she was getting more steadily behind her peers.  I was struggling with a lot of self-berating for not getting it right.  Did I not really believe it?  What was I doing wrong?  Then I realized that Elise had had a LOT of medical issues, so perhaps that was making an impact?  At the end of her chemo, and the beginning of being put into the school system part-time at age 3, I felt surely she would start her upward climb.

Again...not so much.

I decided that as long as I treated her as if she could do things, then she would continue to have input and opportunities, and I quit thinking about it...I totally pulled a Scarlett, "I shall think about that tomorrow!"

Again, fast forward some more...  I realized abruptly a few weeks ago, that my Magical Age Nine would not be the magical age I had hoped it would be.  That she was not talking and communicating as I had hoped she would be.  As a matter of fact, she was so very far behind, it is interfering with her ability to make and keep friends...and even play...despite the progress she has made.  We are still playing the Word Association Games that have become such the staple in our life.

And I started thinking forward to the same fears as my friend Anna is worrying over her little girl.  I started really wondering about Elise's general independence and communication ability.  I started concluding that our intervention, instead of helping her stay with her peers, was more just keeping her treading water...just keeping her from drifting backward in the flow of life...holding.

I find myself wondering again, if Elise will ever be independent.  I started pestering Ethan about my worries, and we concluded the same thing.  Keep on treating her like she she would improve, and don't start panicking, yet. 

I really don't know, what Elise's future will be.  I have decided to "worry about that tomorrow", too.  There is no need to borrow trouble.  Even God reminded me of that recently, when I was worrying if we were burying our heads in the sand.  Matthew 6:25-34...It was quite the gift, frankly!

Really...tell me this doesn't help you, too!

"Therefore do not worry about tomorrow, for tomorrow will worry about itself. Each day has enough trouble of its own. "  ~ Matthew 6:34