Our Normal – April Kennedy {special needs}

{if you are new here, check this out to see what we are all about.}

April is a sweet friend in real life.

In fact, she was one of my roommates at Blissdom last year!

April is a kick…and girl has some stories to tell!

Plus, she makes some ultra cute stuff.

April in her bubbly speech and darling style also has the cutest family which includes a boy with special needs.

Here is her story.

* * * *

He was breach. I wanted a natural delivery.
An ultrasound was scheduled. I wanted him turned.
The technician left our ultrasound appointment 5 times.
I turned to Dave and said, “something is wrong with our baby.”

My mind went back to when I was 18. Just out of high school.
I was assigned a mentally handicapped boy at church to be his one-on-one teacher on Sundays.
I was one of the only people at church who could calm him.
With the touch of my hand, Timmy would melt into me. Listen to me.
I loved Timmy.
I spent 5 years with Timmy.
Even getting him to attend his first church dance, reminding him to wash his hair, brush his teeth and put on his deoderant. I had to stay with him the whole time in order for him to go, but I loved every minute of teaching him how to dance.
It was then I knew that if I was ever given a special needs child I would be OK.

Dave on the other hand was so scared of having a special needs child he had pretty much decided that he didn’t want children. When we married I assured him that the chances of us having a special needs child was slim to none, but as I said said those words, thoughts of Timmy would come rushing back to me. I would just assure him again that he would be a wonderful father to any child entrusted to us by God.

We left our ultrasound and there was a message blinking on our answer machine when we got home. It was our doctor. My worry was confirmed. Our second child, a boy, would be born with Spina Bifida, a permanently disabling birth defect of the spinal cord. Appointments were scheduled at UCSF, a speciality hospital an hour away, and we would quickly learn all that we needed to learn in three short weeks before his delivery.

Over the past nine years we have laughed, cried, mourned, learned, shared, and I have journaled all of it on our blog. Dave has posted a little about it too. Here are a few snippets of our life from the past few years….raising a boy with special needs.

*  *  *  *  *
On a Dad’s Feeling of Raising a Special Boy:

“In my former life I was absolutely sure I would not have any kids because of the fear they might be disabled. Fast forward 10 years and bingo, kid #2 is on the way. Three weeks before he was born we found out something was wrong. My greatest fear of all time had just crashed head on into our lives. Now what? I can’t just run away or give up, so we have a crash course on Spina Bifida. I was scared and so was Ape.

….For a guy there is no tougher question than asking us about feelings. I would love to tell you that it has only made me stronger as a person. That I rose to the challenge and grabbed the bull by the horns. Sure those things are true because I had to do it but some days I’m frustrated. I don’t want to cath or change any more diapers for a 7 year old. I would like to head out on a Saturday and not have to pack the bag with cathing supplies, or worry if Blake can keep up. If I focused on those thing and some others it would drive me insane. So HOW DO I FEEL? I feel love, love for Blake and his challenges. I feel humble when he teaches me little things about life. I feel sadness sometimes because I know he will never be the athlete he is in his mind. Not for lack of trying or determination but some things just do not work in his body…..I feel very fortunate to have Blake in my life. I am stoked that I didn’t miss the opportunity to have a child with special needs.”

On Siblings of Special Need Kids:

She belongs to an elite group….this daughter of ours. Kaia is an older sibling to a child with special needs. Those siblings make up an elite group. At least in my eyes. She sometimes goes without because of Blake’s disability, without much complaining. She carries a heavier burden with the responsibility of a younger sibling with hourly medical needs, at her insistence. She is tender and understanding and amazing at coaxing and handling Blake when difficult times arise. She wishes often that people would know and understand why he sometimes throws fits and not just think that he is being a baby. She sometimes suffers consequences because of the actions of her little brother when it really isn’t her fault at all.

So when I found out that she was getting 30 minute lunch detentions because she was sometimes tardy to her first period class, I went in and had a chat with the Assistant Principal……
I explained to her that Kaia would need to be excused from any detention that was associated with tardies because 99% of the time, they weren’t her fault. She is most always sitting in the car waiting for us. I explained that we have special circumstances at home that involves a younger sibling with a disability. I told her that we can get up some mornings at 6:30 am and still be late for school because of a potty accident right before we walk out the door. I went in there firm but nice and when she started to offer a few alternatives…like can she get a ride to school from someone else…I quickly stated that we rely on people often for help and that our morning routine is something our family needs to handle as a family. Blake needs to feel responsible for helping our family get into a good morning routine and that we are dealing with this issue as a family because it is daily. I had a comeback for any option she was going to throw at me. What it came down to was this….Kaia belongs to an Elite group and will be excused from any detentions relating to tardies. She smiled and agreed. And I think she really did get it.”

On A Mom’s Heart Ripped Out from Teasing:

I was saddened yesterday….first time since Blake started Kindergarten.

Blake, on the way home from school, told me that a boy reached over and pulled up Blake’s t-shirt to make fun of him that he wore diapers to school. {Sometimes the diapers peek out above his jeans….we try so hard to hide them….but they are size 6….hello….hard to hide all the time, short of wearing overalls…but those went out in the late 90′s!}

I flipped a U-turn in the car to head straight back to his classroom. I was furious…not that a child had teased him. That is going to happen. I was furious that a child had invaded his personal space by pulling up his t-shirt to expose what we were trying so hard to keep a secret. It was like the kid reached over to me and yanked my heart right out of my chest.

I talked to the teacher, who by the way is being wonderful to Blake, and she said she would make a call to that child’s father to explain what happened. We decided we would talk to his classroom next Tuesday and explain that Blake was just made a little different….and just like we don’t make fun of people who have blond hair or black hair….or someone who wears glasses or uses a wheelchair….we don’t make fun of people who wear diapers. I am keeping my fingers crossed that the kids accept it well. Most should. Once educated, children can be very caring and show concern.
I knew it was going to happen….I just didn’t know it would hurt so bad.

On Some Days….


I have a 7 year old, who still wears size 6 diapers. Some days….I am grateful that we can still buy diapers off the shelf and aren’t having to special order them. Some days….I want to scream “I am sick of changing a 7 year old’s diaper.” Some days….It is what mine and Dave’s biggest arguments are about. Some days….I hate being in Holland….and, Some days….I enjoy our time in Holland. Today….The jury is still out.

On Changing the Way Medical Professionals Think:

This day nine years ago….I was preparing to bring a baby into the world who I was told would have:

Spina Bifida
Club Feet
Not be able to Run or Jump
Hydrocephalus
Require Surgery right after Birth
Need a Shunt
Require Regular Cathing
Would be Allergic to Latex.

3 out of 8 isn’t too bad!

Why didn’t any of the doctors tell us he would also bring us the greatest blessings to our family and be such a joy?

Why did they paint such a dismal picture?
There needs to be a change in the medical field. STAT.

*  *  *  *  *  *

We say we are normal. Our normal isn’t everyone’s normal.
We are OK with that. We have a new normal.

We also use to say that Blake was so lucky to come to our family.
We now say that WE are the lucky ones that Blake chose us.

We are honored to share our thoughts here on Jeannett’s amazing blog. When I first met Jeannett I didn’t want to leave her side. She is everyone’s biggest cheerleader. We are supportive in her noble causes. Will you join us please by making a donation?!

* * * *

Alongside each blog series, we also host a fundraiser benefitting a related cause.

In this case, I’ve chosen Free Wheelchair Mission…an organization that provides mobility to the impoverished disabled in third world countries.

Because there is no question that life with special needs can be a hard place to be some days.

I truly cannot imagine what it would be like without all of the therapies, specialists and equipment available at my fingertips.

A phone call, a meeting, and yes, oftentimes a check…but always available.  Without question.

As moms of special needs babes or not, lets band together and help another sweet face on the other side of the world…made just as perfectly by Him as our own…knit together purposefully in their mother’s wombs…but in a place where the abundant resources we have come to take for granted are not even a part of their vocabulary.

Just one dollar.

Truly.

If each person who visits my blog gave just one dollar…we could provide hundreds of life changing wheelchairs.

Let’s make a difference together…it’s so worth it.

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jeannett
I'm a mom to four. A wife to one. I believe in story. I love telling you about mine and would love to hear yours. There's really no sense in wasting our suffering and not sharing in each other's joy. We're all in this together...even if it doesn't always feel like it.
jeannett
jeannett

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Comments

  1. 1

    simply beautiful and filled with heartfelt love, dedication and joy. My God richly continue to bless you and your family through Blake.

  2. 2

    Thank you for sharing your story.

  3. 3

    aww! such sweet story!! thank you for sharing!

  4. 4

    beautiful, april. so thankful you have blake and he has y’all!
    xo

  5. 5

    Thanks, Jeannett for hosting April. What a great new perspective. God never gives us more than we can handle- he changes our hearts to understand. Thank you!