Tuesday, September 06, 2011

Picture perfect...

She rode the Special Education bus.  It's not the bus I had ever envisioned her riding to her first day of kindergarten.  Well, at least not before she was born...when all my hopes and dreams for her were of those of typical parents.  And then there was a time in my life that I didn't even know if she would go to school.  So, riding the Special Education bus is...in fact...a huge milestone for her.

My dreams for her have changed.  It was a hard thing to accept.  It still is.  And it is an ever-changing dream.  Because I still don't know what her future holds.  It's not that any parent knows what the future holds for their child.  But when you have a medically complicated child, there is so much more unknown about the future.  Sophie still has daily seizures.  They are affecting her.

At least when she was seizure-free, I kind of knew where she stood and where she was going.  I knew that she would always be developmentally delayed (she did have the majority of her left hemisphere surgically removed).  But she was making tremendous gains.

We have tried a whole list of medications since her latest relapse.  Nothing is working.  Zonegran did help but the positive effects have worn off.  Her seizures are at an all time high since surgery.  

Her speech and language are surprisingly amazing.  She is incredibly social.  And, of course, the most adorable 5 year old girl.  So the combination of those three traits...well...she can pull off appearing typical at times.  And I am SO GRATEFUL for that.  Not for the fact that she can pull off appearing typical but that her speech, language and social skills are at that level.  So I am trying my hardest to enjoy these days.  The days where she is five, six and maybe even seven years old and her immature personality will still seem that of a typical child of that age.  I know I am probably pushing anything past kindergarten since I already see the "hmmm something is not quite right here" look in the eyes of her peers.  Because even though she is incredibly social it's not always appropriately social.  One of the reasons I loved preschool so much is that it was a mix of three, four and five year olds...so being immature was easier to blend in.  I hope that as she grows with the kids in her class that they will just accept her for who she is.

And even though I have accepted who she is, I still do everything I can (when I have the energy) to make sure she lives a well balanced life with just enough therapy but not too much.  It's a fine line.  And Charlie and Elsa definitely help me with that!

And so does my mother-in-law, Debbie.  I can't even begin to list the number of things that she has taught Sophie over the years in such a fun and exciting way.  They have an amazingly special bond and she has always been there for Sophie (and me!).

We are living our lives the best we can.  She tries our patience to the fullest extent almost on a daily basis.  She pushes me over the edge to where I say and do things that I regret so much that it hurts my soul.  And at other times, she can make me so proud that I cry tears of pure joy.

The first two weeks of school have been a huge adjustment...for me, for Sophie, for her teachers.  But we are all beginning to find our way.


Kerri said...

Oh my goodness Elaine, you just spoke my heart! Totally brought me to tears. Everything from the changing dreams, to the wanting to fit in at a normal capacity, to the trying of the patience, to being so proud you are moved to tears, and even the regrets that I tend to say and do too. Everything!!

I am so proud of Sophie. The smile on her face is amazing!! Our kids are remarkable! What they have faced in their young life makes them tough as nails. Now if only us parents could follow suit :)

I'm praying for you guys! Thanks for the update and the pictures of Sophie! You guys are doing an AMAZING job!!


Zoey's mom, Heather said...

I cannot believe how much she has grown. How absolutely beautiful she is. How strong and amazing a little soul can be, and how, along the way and through the battles, she continues to do the teaching about this life.

All of our children manage to somehow do that. Eventually we discover things about ourselves that we need to acknowledge and own, the good and, unfortunately, the bad. We learn to forgive our shortcomings and say, on some days, that was just the best we could do. And little by little, we all find our way. Perhaps in different directions then we envisioned and hoped for and with unexpected and heartbreaking detours but we continue forward, all,because they do. They lead, we follow.

Sending love from Miss Zoey... she still wears those rocking Babylegs and my little 23 pound peanut, JUST our grew that darling onesie!

happy's mommy said...

Oh Elaine...

I really couldn't love you any more.



Sinead said...

Wiping away the tears. Love you hun.

JSmith5780 said...

Congrats Sophie, have a great time and school! I hope you learn lots!

P.S. When the heck did Elsa and Charlie get so big? Wasn't Charlie just born?!?!?

lisa said...

I wanted to leave a comment when I first read this but our internet connection has been really spotty lately...anyway...you and I are living the same life, my friend. Everything you wrote about kindergarten is what I'm dreading for next year...and yes, I see the looks from her peers too, the something is not quite right here looks. Hate it.

She is so beautiful!

Maria said...

Your life is amazing. Your story is beautiful. May the grace of the Lord embrace you all. The needs of the child is exhausting upon the parents. It sounds as though your support system is amazing (God Bless your MIL). I certainly hope the school teaches the children in your daughters class about the importance of being understanding and it's okay to be different. They need to teach the students about the what's and why's of Sophie. Once they understand; they will no longer look at her with the "not quite right" look. There will be patience and understanding. It's words that are hard to say, difficult to hear and bring reality to a new level. Children who don't understand about the whats & why's of Sophie will be more inclined to to judge. If we teach child to replace judgement with understanding and compassion, we better the situation and the world as whole. I wish you peace. (I enjoy your blog thoroughly.)

Stephanie Lanier said...

Hi! I read your blog and have for sometime. I will be praying for your sweet Sophie's surgery. We go back to Boston on Dec. 14th for Oliver's post-op follow-up. It appears the surgery didn't work. UGH! This is all so hard isn't it? I really, really resonated with your post about starting school. My heart is heavy for you...