It's so hard for me to believe that I haven't updated this blog in over 3 years. It doesn't seem possible that you are 4 years old . I think of all the months and days and hours and moments that have slipped through my fingers and it is overwhelming. I wish that I could turn back time and write down all of the small things that I know I have already forgotten. But the truth is most days are just as chaotic as they were that first year and maybe more so . You and your sisters and Brice are older now and in school and tumbling and swim and play dates and learning to drive and a million other things it seems.
So much has changed in 3 years and yet so much is still the same.
You are still you. Equal parts joy and determination and tenacity and sweetness, You radiate happiness. Even with a giant metal contraption screwed to your skull you still smile and laugh. We have no need to guess at what you might want anymore. You tell us in full sentences exactly what you need and when you need it. So much of where we physically go on a daily basis is determined by your medical needs. Dr's appointments and surgeries and follow ups non stop. But what we do that's a different story. That my sweet girl is determined by you. You are the ringmaster and we are your troupe of trained monkeys. You will often catch us shaking our heads and discussing how spoiled you are but we don't do much to fix it. You have each of us trained in different ways but the truth is we all live for your shrieks of happiness when we enter a room. Even if we've only been gone 5 minutes you act as though we are royalty when we return.
I think I spent your whole first year frantically putting together the milestones that you met that would signify that you were going to beat RCDP and live a "normal" life. I've spent the last 3 years thanking God that he made you exactly the way that you are. I would give anything to take away the pain that you endure on a daily basis but I wouldn't trade you for a million versions of "normal" . You are the thread of sunshine that holds us all together.
I'll do my best to catch you up on more details from the past 3 years soon but for now know that I am so proud of who you are and so incredibly proud that God chose you for me.
I am so blessed.
Wednesday, February 2, 2011
I can hardly believe that you are 13 months old. It's hard to imagine we ever had a life without you in it. The past year has been such a roller coaster but its a ride I wouldn't have missed for anything.
This month marks one year since we first heard about RCDP . This first year has been such a whirlwind of Doctors and hospitals and surgeries and bills . As I read back over the few blog entries I have made I see so many times that I mentioned how sad I was or how frustrating situations were. I'm making it my mission to update this blog every couple of days this year because I never want you to go back and read these letters and think that you somehow made me sad or depressed all the time.
Sure I have had my moments of frustration but the overriding theme of this year has definitely been one of JOY. You are truly amazing. You have the most tenacious spirit of anyone I have ever met. You NEVER stop trying . You may not do things the conventional way but you figure out a way to get them done!
You move all over this house. Its not exactly crawling but its definitely forward motion. Some evenings I can tell that your ab muscles are so sore from all the moving you've done all day but you just keep on going.
Your occupational therapist is always saying that as soon she writes a goal for you you immediately master it. You are an overachiever without a doubt.
Your most recent favorite thing to do is screech at the top of your lungs. The problem with this is that you want your sisters to screech first so you can copy them. It totally makes my ears ring but its so worth it to see you laugh.
You had a spinal decompression surgery back in November and I think that has made a world of difference for you. Your muscles seem looser and you are so much more flexible in your movements.
Well I have so much more to write ( January was a very eventful month for us ) but Rory will not stay in bed and she's waking up the whole house in the process so this will have to be continued......
at 9:35 PM
Wednesday, November 17, 2010
These two pictures are my current favorites of Marley. The first was taken about 6 months ago in a waiting room at Scottish Rite hospital and the second was taken last week at Ronald Mcdonald house a couple hours before she had her spinal surgery.
She hasn't worn her glasses since shortly after the first picture was taken so its fun to see how different they look on her now! I also love that she is so relaxed and happy in both pictures. I on the other hand was a nervous wreck! Looking at these just reminds me how far she has come and makes me excited to see what amazing things she is going to do next!
This post was inspired by a photo carnival at Love that Max ( one of my new favorite blogs!)
at 2:26 PM