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Wednesday, November 19, 2008

All You Need Is Love

I'm watching Love, Actually on Bravo.  I love this movie and all it's lessons.  It's a feel-good movie with lots of laughs and a happy ending, the only kind of movie I can watch these days. It makes me want to hold hands.  Write a love letter.  Be brutally (or bravely) honest.  To connect rather than have connections.  Miller does this same thing for me.  His sweet spirit touches me in a way that only God can.  He makes me stronger than I ever knew I could be.  I have learned not to be such a pleaser, but instead to be an advocate.   This is HUGE, since I am known to be ruled by my emotions and a big fat sissy when it comes to conflict. Though I don't believe I'm alone.  Any momma can tell you that having someone to protect makes you instantly and infinitely...powerful.  He makes me want to be the very best version of myself.

It's been way too long since I've posted, I know.  But life is messy sometimes and we need some Tide!  Ok I don't use Tide, I use Method Baby, but whatever. This has been such an awesome year and also a tough year for us, me especially.  Danny is great about staying on an even keel.  I have been on the roller coaster so long it feels like we moved to the State Fair and I am now a Carnie.  During the rough patches it's harder to blog.  This is strange, since blogging used to bring on a sense of peace during the scary times. 

So MUCH has happened with Miller and yet so little.  As we celebrate his accomplishments, we are sometimes discouraged. Not by our own measures, but by the criteria of others.  Miller looks great. He's SO healthy and we are SO thankful for that.  He's happy, and silly.  People forget all too easily that he was a 2 pounder who suffered a major brain hemorrhage. He has been diagnosed with 'mild to moderate' CP.  We are so lucky he's alive!!  He is facing many, challenges and we don't have a clue where he's going to end up.  We're shooting for the stars, no change there.  But it stings when someone asks 'is he walking yet??'. Umm, no.  And then the 'I'm sorry' face follows. I promise to take out a full page in the Statesman when he does.  Seriously.  That question is off limits until further notice.  Don't feel bad if you've asked that question before, or any others met with awkward responses.  It's the nature of the situation.  Even family members who don't see him often will be thinking (and subsequently asking) if he's doing things that 'normal' toddlers do.  The answers are:  Yes. No. Sometimes. We're working on it.  Almost. And, hopefully one day.

Miller has been seeing a new therapist now for a few months and she's excellent.  I cannot even really begin to explain how great she is, and I think I get a little therapy out of it too.  She lets me speak candidly, and shoots straight from the hip.  I really love that she makes Miller work hard, and I know she really gets it.  By 'it' I mean this whole pediatric therapy thing, coupled with Neurodevelopmental Therapy.  And she's calling the shots.  She doesn't work for anyone, she works for the kids.  And they all love her, even when they don't. We are seeing lots of progress with MLP, just not the kind of progress you'll read about in 'What to Expect the First Year'.  In the past, I have felt like the therapists have let Miller take the lead.  I always ended up feeling like it was a waste of time in hindsight. These days, on the therapy side, I feel like I can relax a bit.  Oh and her staff.  Amazing!  We are treated like family which makes it all even better.  I am totally incapable of keeping things 'strictly business'.  Ask any business or medical professional who has come in contact with me. I have to get to know people.  I want to, and I think that's a good thing.

We recently had a run-in with a doctor in town who, by his own admission, doesn't mesh so well with Miller's therapist.  It's too much of a drama to go into, but let's just say I'm committed to this job as 1) mother and 2) number one advocate for Miller, so, I WON.  IT'S MY JOB TO WIN. It's not the first time and it won't be the last, but it does put an additional strain on things.  I am emotionally attached to my job so there are some shaky moments.  I think any parent can relate. It makes me keenly aware that I am still to find additional purpose in all of this.

Miller is just 2 days shy of 19/16 months.  I don't know all of Miller's stats at the moment, but he was 23 lbs the last time he was weighed, in the 5-10 percentile for his age.  He is getting taller every day!  He has 8 full teeth, 4 halfway in, and 2 molars poking through...which makes 14!  He is learning what 'no bite' means, and 'Owwie!' too. So far, everything still looks great with respect to his brain injury.  Nothing new or scary.  He is slowly gaining more strength in his trunk, and we are working on using his limbs in a more functional way than feels natural to him. He's getting better at weight bearing on his hands & knees which has been a big challenge lately.  With his growth it seems like his tone has increased again.  That's a normal process in development, but since he already has increased tone we don't need any more!!  He is WAY more flexible and his dexterity has improved.  He says more words now, and often at the appropriate times.  He loves to mimic us, and he babbles all of the time-which I think is just practice.  He LOVES to swing and to be flipped upside down, and his new thing is to be spun around.  Which requires ME to spin around.  Why did I ever show him the spin around game?!  Recently we spent a weekend with close friends who have 2 & 3 yr old girls, and boys that are about 10 months old.  Miller was really interested in the babies and tolerated therapy SO WELL when they were around.  We may have to borrow a baby or two in the near future.  I think those boys are magical!  He didn't seem to be bothered at all by the energy of the girls, and in fact he really seemed captivated by them (when they sat still!).  

Last week he was fitted for AFO's for use in therapy. Click Here to read about AFO's.
Once we get them and put them to use, I will post pictures and progress.  Ultimately, we hope they will aid in his ability to walk, but that's a little ways away.  For now, we will stick to the figurative rather than literal, baby steps.


Kelly said...

great post. i can relate so much to what you mean about 'so much happening, and also so little'. i was happy to see a new post from you as i found you a while ago and enjoyed reading your posts. your son reminds me of my little guy who is just a few months younger than miller.

Chad said...

Great post, keep up the good work and I hope to see y'all soon (we have a baby if you really need one!).

Mary Harwell said...

Hi! My name is Mary and I stumbled upon your blog and have suddenly felt as if I am not alone. I have a 23 month old son with mild/moderate CP. He was a premie like your Miller. His name is Jack. He gets his first pair of AFOs on Thursday. He is not walking now....I can't tell you how much I understand your frustration and sadness when you are asked 'is he walking'. As we approach two years Jack's disability seems so much more profound. Before he was just a he is a toddler who can't walk. I would love to keep in touch. Please email me anytime at