Month: June 2015

Don’t blink

copperluckandhope

When you have a toddler, people tell you not to blink a lot because “they grow so fast!”

“It all goes so quick!”

“Enjoy every minute!”

“You’re gonna miss this!”

I have no doubt that’s true. I smell the chubby baby’s hair on my lap and soak it in. I hear the seven year old boy ask me to snuggle and I know my days are numbered. But when your kid(s) have so many challenges, it really doesn’t go all that fast. 

Ben’s first five years felt like an eternity. We crawled, tooth and nail, to hit Every. Single. Milestone.  

 This is not necessarily a bad thing. For many reasons including if you know Menkes, you know how lucky we are to even be crawling at all, much less doing all that Ben is. 

I also read a post by another mom-blogger recently who made a list of the pros of having a special needs kiddo. One reason was that they stay little longer. That is so true. My seven year old needs me a lot more than yours needs you. And some times that’s really nice. To feel so needed. Especially as they get older and more independent. 
 

And other times it’s exhausting. Those toddler and preschool years seemed to take forever. “The days were long…” and so were the years. He never seemed ‘two’ or ‘four’ or ‘six.’ Because despite the calendar age, he wasn’t always doing what he “should” be. 

Adorable at every age

As the first kid, it’s a shame because I know I rushed him so. Relating him to Kelsey now…knowing “two” is still equal to “baby,” I realize that while he wasn’t doing what all our friends’ kids were doing…it wasn’t such a big deal. He was a baby! But I’ve never been great about being different than the rest. 

While we’re discussing comparisons, I try to use these realizations to Kelsey’s benefit. “She’s only two. She’ll get there. It’s ok. If he did it, she can totally do it.” I don’t always believe myself but perspective is a great gift.   

   

BUT, while those pre-school years were lonnng, the school age years are speeding by. I get it!!! I get what all those Experienced Moms were telling me. Don’t blink! Before you know it, they’ll be 26!

Kindergarten was a big deal. Big kid. Big school. Big deal. First grade sounded older but still little. ‘Know what I mean? And so quickly. All-of-sudden. Even-after-that-never-ending-winter…first grade is over and I will have a second grader at 1pm today.  

First and last day of first grade

 

To many readers, I know you’re cyber-smiling at me thinking, “Aw! Isn’t she cute. She thinks second grade is old. Just wait, Honey!”

I hear you. I know he’s still a baby but…I finally get it. This year. Right now. It all does go by so quickly. 

Help and Time

copperluckandhope

Months ago I prayed very hard for God to send me some helpers.  We had so many questions in regards to Kelsey’s health, irritable mood, and slowed development.  Every adult we came in contact with had suggestions.  Constipation?  Frustration?  Teething? Low muscle tone?  High muscle tone? And the list goes on and on.

It seems we have found a root of Kelsey’s struggles–seizures.  And if I think closely, God answered my prayers by sending a lot of helpers to get to that point.

We tried cranial sacral therapy, and while the chiropractor was very helpful, she didn’t “solve” our problems.

We saw a developmental optician.  She had a lot of good guidance and answers and has helped us in so many ways, but she also told us not to worry about the jerks that would later be diagnosed as very serious infantile spasms.

We met with Ben’s beloved orthopedist and she prescribed AFOs (leg braces to correct misalignment and weakness).  The first pair didn’t work so we tried a second.  Not those either.  Kelsey’s foot kept slipping up and out of them, no matter what adjustments were made.  The doctor then told us to stop using the braces because they were making Kelsey more awkward.  That was a relief, but she’s still working hard to do what comes so naturally to most…and still isn’t walking at 25 months old. So we’re left to wonder if that was the right decision…to do nothing.

The orthopedist said we needed to add once-a-week physical and occupational therapy to Kelsey’s already packed therapy schedule.  We’ve learned some good techniques, and what her needs and goals are, but we haven’t made a ton of progress in either department.

As it stands, Kelsey has:

2 Physical Therapists

2 Occupational Therapists

1 Speech Therapist

1 Educational Therapist

1 Vision Therapist

She has a pediatrician, developmental optician, an ENT, a neurosurgeon, a neurologist and an ophthalmologist.

She has future appointments to add a developmental pediatrician and a second, private speech therapist to her list of people.  And today, a developmental nutritionist was recommended to make sure she’s getting enough of what she does need and not too much of what she doesn’t (i.e. sugar).

Who’s tired?  I AM!!!  I’m exhausted.  Guess who else is exhausted?  KELSEY!

Lately she’s been manageable…playing…happy(ish)…and trying new things as long as she doesn’t have to perform for strangers (non-immediate family members).  And everyday we are asking her to perform.  And it’s not working…therapy, that is.

Right now, more than helpers, I think she needs time.  That and to be left alone.  Dave and I wonder how long the seizures have been the root of her challenges.  Six months?  Nine? Twelve?  It’s been over a year that we’ve been asking so many questions and spinning wheels to find the answers.  And in the meantime we’ve been making a baby-now-toddler, who has a mind of her own like everyone else, perform on a daily basis for one of thirteen or more adults.  And she is sick of it.

I’ve been canceling more appointments lately, than I’ve been keeping.  I often know that we’re going to go to therapy or to meet a new doctor and Kelsey’s going to cry, whine, and refuse to perform. The therapists, doctors and well-meaning adults in general, are going to ask questions even though many know her so well now.  Is she tired?  Is it nap time?  Does she do this for other therapists?  Is she hungry?  What’s the matter??!?!? So I cancel to avoid it all for both of us. And we go to the park or library instead (and by library I mean Target)…exactly where a two year old belongs.  😉

I’m struggling with the fact that she so badly needs the therapy, but it makes both of us miserable…and often wastes a therapist’s time and a lot of money…and not that much is accomplished.

And then something like this happens…

Just yesterday, Kelsey climbed the entire flight of stairs for the first time.  And she did it so effortlessly.  We try this every week at therapy and it’s labored, coerced, loud (crying), and heart-breaking to watch.  She just hasn’t wanted to–or been ready to–do it.  But because her brother was in front with her favorite toys, and I was behind her guiding her along…she happily climbed on her own.

I’m glad we got the helpers and some answers, but now I think we just need time.  I am so grateful for all the therapists in our life (Ben has a nice, long list himself), but sometimes I wonder if Kelsey just needs to be a seizure-free kid for awhile with some time and freedom to figure it out on her own.

Until then, we will keep plugging along.  We’re happy that summer is here…vacations are coming…and that schedules might be more relaxed.  We just might use the time to take a break from so many appointments and enjoy the ride a little more.  Anyone that can relate to the therapy hamster wheel, feel free to send me a message!  Misery loves company.