You Can't Judge a Book by it's Cover

I have always heard “You can’t judge a book by it’s cover”  Well, I learned yesterday that you can’t judge a kid cart by it’s cover - let me explain.  We have several pieces of equipment we use for Peyton.  The stander, a tumble chair, and some therapeutic toys, etc….a few weeks ago, our great friends with Early Childhood Intervention brought us an adaptive stroller for Peyton.  Ed and I took one look at that stroller and put it in the garage and left it there.  We have accepted a lot over the past 10 months about Peyton and her development and her special needs, etc…..but we just weren’t ready to see that stroller.  To us, it looked like a wheelchair and every time I looked at it, I felt like I was accepting that she wouldn’t ever do normal things.  Silly, right??? 

Well, yesterday, her physical therapist asked where the kid cart was and I kind of mumbled something about it being in the garage and she asked me to get it.  I begrudgingly brought it into the living room and she proceeded to help us get Peyton into the chair while explaining that this chair was not a permanent fixture in her life, and it was going to help Peyton learn to sit alone and get more head and trunk control.  Once Peyton was settled in, she really liked it.  She could look around and feel like a big girl and see the world from a whole new perspective.  I quickly changed my attitude about the kid cart and realized that I had to get over myself (yet once again).   Seems I spend lots of time getting over myself latelyJ

Welcome To Holland

"Welcome to Holland" is an essay, written in 1987 by Emily Pearl Kingsley


I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......


When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."

But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.

So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.

It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.

But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."

And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.

But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

Mad vs Happy

Busy week!!!  The beginning of the school year always brings chaos to our world.  We had a great Labor Day weekend…..spent it with some dear friends that we have known since before we got married and although they moved away, we still maintain our friendship and get together whenever possible.  We went to their house this time and a fun time was had by all…..there was even a midnight ride on the John Deere Gator…..not the kids, not the Dad’s, so that just leaves the Mom’s - love my friend Kim -  we laughed all weekend long.  She has three sisters that feel like family and we loved seeing them, too!

Peyton enjoyed herself and made herself right at home with her toys and bonded with their Dachsund, Pepper, who was 12 years old and seemed to know that Peyton was a sweet baby and just snuggled up to her…pic posted below.  Sweet Pepper died this past Tuesday and we are so thankful we got to be there for her last weekend.

Peyton’s week has been good.  Still teething like crazy, but seizures have been somewhat minimal.  She is still trying hard to hold that little head up and seems to have her best head control when she’s really mad at us.  What makes her mad you ask???  Let’s see, HUNGER, boredom, discomfort, crowds, did I mention HUNGER??, teething, and any physical therapy that she has to work at.  What makes her happy?? Baths, FOOD, Mackenzie, Blake, cute little dogs (that Daddy refuses to let us get for her), her toys, wind on her face when she’s outside, visits to her Chiropractor, grandparents, staying home and did I mention FOOD???  Typing this list of her likes and dislikes makes me happy because it reminds me that she IS her own little person with her own little personality that is slowly starting to emerge.  It also makes me smile because her list of likes is longer than her dislikes.

I will update more later and post some new pics.  Everyone have a GREAT weekend!!  Thanks for reading about our sweet girl and for keeping her in your prayers always.

Our Three Words

10 Months Old

Sorry for not posting much lately, but Ed has been out of town for a few weeks and I have been single momming it (with lots of help from awesome family).   Peyton’s seizures have been a little more frequent this week, but she has been teething and that usually stirs things up with the stupid Seizure Monster.  The last day or two they have slowed down again, thankfully.  She does seem to be more aware of her surroundings and seems to have better focus.  She is still batting at her cool toy and if we cheer for her, she hits it even harder (pic posted below).  At times, she seems to have much better head control and seems to be trying harder to hold it up.  She likes it when Blake or Mackenzie read to her.  It’s been a very good way to encourage Blake to get his homework reading done since he drags his feet about doing it every night, but having Peyton stare at him adoringly while he reads seems to helpJ 

Peyton is 10 months old and it’s so hard to believe!!!  I don’t even try to compare her to what a “normal” child would be doing at her age, because Peyton is on her own path and progress can’t be measured by normal methods and we just try to be thankful for the small baby steps of progress.  She has brought such joy to our lives and I can’t even describe what it’s like to see Mackenzie and Blake become better people just by being Peyton’s big sister and brother.   God has given them each the gift of compassion and this whole experience so far has helped them open their eyes to the reality that special needs children are kids like them and their special needs just make them unique individuals. 

Hope everyone has a nice long holiday weekend!

Day by Day

So, if you had told me a year ago that Mackenzie would be starting 5^th grade, Blake would be starting 3^rd grade, I would be working full time and enjoying my life and my kids, I wouldn’t have been surprised but if you had told me a special needs baby would be thrown in this mix, I would have had a panic attack ON. THE. SPOT.  Funny how all that we’ve been thru in the past 8 months seems so HUGE while we were living it but in retrospect, now that I’m on this side of it and I know that more challenging days most likely lie ahead, the past 8 months seem more like a part of a bigger plan….a plan bigger than me, bigger than my family and bigger than anything we have the ability to understand.  My control (which I never really had in the first place) has been taken away and replaced by trying to learn to live day by day and to live by faith.

On to what is going on with Peyton – we are still seeing daily seizures, but nothing like we have seen in the past.  Development is a struggle, but we keep on keeping on and I know all her hard work is going to pay off.  One of my favorite times of day is every night at about 9pm when Peyton is winding down and I hold her against my chest and she stares up at me and all is right with our world.  I put all thoughts of seizures, developmental delays and other stressors right out of my head and I just hold my little baby girl and look in her eyes and enjoy her.  For so many months, I didn’t feel like I could enjoy her because I was always waiting for the next seizure, but I am no longer letting the Seizure Monster rob me of the joy of my baby girl!!!  So, Seizure Monster, once again, you are not winning!!!  

Excited & Apprehensive

News of the day, of the week, of the year…..Peyton has had only ONE seizure in the past 48 hours.  This has NOT happened since she started having seizures.  I want to be excited and do some cartwheels, but first, me doing a cartwheel is not even a remote possibility and second, being excited scares me to death.  This roller coaster we have been on for 8 months hasn’t allowed us to be excited for very long so I am maintaining my cool and being thankful for 48 hours of only ONE seizure.

 

Latest developments are several…..Peyton has a stander.  This is a device that is helping her learn to stand and helps with weight bearing on her legs and hips.  I am posting pics – she didn’t like it at first, but after she got comfy, she loved it and even fell asleep in it!!    She continues to bat at her toys and has even started putting weight on her legs when I hold her and she straddles my leg with her feet on the floor.  She is making more eye contact and is much quicker to let us know when she’s unhappy these days.  She is cutting her second tooth so we have had some sleepless nights, but we are ok with this – I would rather she be fussing from teething then sleeping from seizures. 

Progress is slow, but progress IS progress!

LET ME OUTTA HERE!!!!!!

ZZZZZZZ.............