After prayers Gage says:

"I know what Ah-men means Daddy "

"You do? What does it mean?

"Amen is something you eat…it’s a nut!"

As in almond. Yup. I believe we parents need us some speech therapy.

For the 5th time in about 10 weeks Gage has come down with a fever. With a temperature of about 102 he’s not such a happy boy about it and it usually has him taking a nap.

The fevers have been unexplained. There’s no vomit, no diarrhea, no other symptoms. Typically when Gage is sick there is so much vomit that I pre-certify an overnight babysitter for Quinn because it means Julian is traveling and IV fluids are in my future. But not as a result of a weekend tequila bender. It’s a process I know well and am comfortable with in our little business of sick kids. We like the known factors. It’s those unknowns that are tricky.

Like coming across a symptom from an unknown origin.

In the last week I’d mentioned the fevers to our two nephrologists during calls about other concerns I have about that lovely urination side effect of ARPKD and the next round of labs. Both said they didn’t know of anything that would be a next symptom in the ARPKD disease progression. So at the request of Dr. Wonderful we’ll be having an extra test performed for the monthly labs (a c-reactive protein test) to see if that shows anything. And we’ll be having labs early tomorrow. So maybe the day after next we’ll know something new.

The important part of this story is that when I left a voice mail for Dr. Wonderful and emailed her about the fever today she listened. I said in my email “Gut feeling. Something is not right.” To which she replied “I agree something is not right” and proceeded to tell me to run the extra test and to get the boy in to see one of our local doctors.

So, in the wise words that I heard hundreds of times in my youth by my mother – “we’ll see.”

Even on the playground the girl has to work.

Quinn attends a lovely public school in our county. It’s a special education preschool through kindergarten. Most of the classes are inclusive – meaning about 1/2 the kids attend because of delays in development and 1/2 are from the neighborhood via lottery.

She is able to receive most of her therapy services at school and the school is built for kids who are differently abled (how PC of me). The entire program is based around them having an enriching, full day geared toward helping kids with delays. In this picture she’s on a playground that is designed for kids with special needs. You see the ramp behind her? It’s wheelchair and walker friendly. And the wobbly hanging poles she’s climbing on?* Yes, they can be seen on regular playgrounds but they were chosen for this school in particular to help build weak muscles on little bodies. And kids with Sensory Integration Dysfunction (Gage has a form of it) will benefit from fundraisers this year that are paying for a new Sensory Garden.

The faculty and staff are particularly special people. I’m not just saying that because you’d expect people who deal with special needs kids ALL DAY LONG to be special. But they really are different. You can almost tell the instant you walk into the place that they absolutely love your child and want him or her to reach their full potential. You get the feeling that everyone who works there knows your child and loves your child.

Hard not to love a school that helps the whole child.

*I’d like to point out that this is pre-broken collarbone and pre-teeth knocking out incidents. The more muscle tone she builds, the faster she runs, the more risk for injury. Poor thing. Her first soccer experience this summer should be a riot.

It was a simple request. For Gage to hold on for 5 more days until the end of school without an incident. Did he? Nope.

As I picked him up today in carpool, the para  from his class said "I’m supposed to tell you that in P.E. he pulled down his pants." Gage’s explaination? The classic "My friend told me to."

Two more days to go. And we’re hanging by a thread.

Gage,

You’ve been doing pretty great since being moved to your new class. Some full days of check marks (yay!) and notes that claim "Gage’s best reading day ever!" and "Gage was focused and participated in everything we asked today!" You are just 5 days away from your summer break. I beg you. Plead with you to hold your act together just 5 more school days. Come on, you can do it.

Love,

Momma

To those of you with a compliant child who has never tripped a deaf child, spit at someone at school because they thought it was funny, or called an authority figure "butt head" this letter and the feelings around this letter must seem foreign to you. Trust me when I tell you that every day I wait in the carpool lane to pick up the boy I hold my breath. I wait until I see the Daily Report from his teachers. And then I exhale.

Pumkin Glory.

Yeah, this is a great picture of Gage. Pure happiness.

He was about 20 months old. I can tell by his shoes where he was in terms of his gross motor skills. His physical therapist had directed us to get shoes like this: high top leather, stiff soled shoes. We didn’t know it at the time, but he was months away from walking. And probably two years away from navigating safely in his world. He was one month into therapy and I was still getting used to the fact that he had 7 therapy appointments per week.

When he is sitting, you can’t even tell he is developmentally delayed. And by the time of this photo I didn’t even care that he was delayed. I was happy he was getting the help he needed and I was proud that I was the one making that happen.

After a 102.1 temperature last night and his description of how his stomach hurt (and the fact that it had been 24 hours since he’d eaten) I thought for sure we would find ourselves in our friendly Children’s Hospital ER in the middle of the night. So to prepare my boy that doesn’t like to do things without warning I said: "If you throw up in the middle of the night we’re going to go to the doctor" to which he replies "Then I will hold ALLLL my throw up in Mommy. No hospital."

We all slept through the night soundly. I guess he was serious.

As a parent to special needs kids one has to be a medical assistant, nurse, insurance administrator, tutor, bookkeeper and appointment keeper. You have to keep on eye on several things relating to said special needs kids; even the things you thought you never would. Letter writing and follow-up and follow, follow, follow-up are essential skills required.

Regarding the following letter: I’ve heard that we parents should no longer worry about a move to a trailer. For the record I’d like to point out that I’m not against classrooms in trailers as a general rule. Some of the best people I know were taught in trailers (I thought it was cool).

Dear Principal,

It has come to my attention that there are plans to move the Interrelated Department to a trailer in the reorganization of classrooms at SCHOOL NAME. I’m disappointed that this was considered at all and is in the process of happening because it seems the students with special needs are not being considered.

It’s no secret that Gage has his share of problems associated with his health and behavior. Gage is in active kidney failure and it will only be worse next year. Because of Gage’s kidney disease, he must take frequent restroom breaks due to the lack of concentration in his urine. As he gets closer to transplant his needs for easy access to a restroom will be more important. Next year he is slated to have a 2 hour morning in the Interrelated room. It is not reasonable to ask Gage and the younger children in the school to travel outside of a trailer and into a building to use the restroom.

And what about Gage’s behavior? Currently it’s a risk sending Gage from the end of the hall three doors down to the Interrelated room alone. What will happen when it is required of him to travel two halls, exit outside, across a breezeway and into a trailer – by himself? It seems to me to be asking for problems to tempt children who are already behaviorally challenged. For them to adhere to making that journey daily and sometimes twice daily – as in Gage’s case – with no problems is unrealistic. I know Gage is not the only child in the school with behavior issues. We need to help all of the children be successful; not add another layer difficulty for them. Don’t they have enough stacked against them? I’m worried for Gage’s safety. And what will the liability be should something terrible happen?

Not only will this change be a hardship for Gage and other students but I imagine the staff. I suspect there will be a need for teachers and paraprofessionals to become chaperones. And doesn’t that then just take away from the student body in the long run? That can’t be good.

Perhaps you know that we have a daughter with the same medical condition and educational needs as Gage who is entering Pre-K in the fall at SCHOOL NAME. It will not be long before she joins her brother at SCHOOL NAME and she will need the same resources from the Interrelated department.

As you depart this year (PERSONAL INFORMATION REMOVED), I implore you to consider the impact of the decisions you are making now, when you will not be here to deal with the effects. I’d be willing to meet with you and others to discuss my concerns in person.

Thank you for your time,

Julia, Gage’s Mom

Time Markers

I love time markers and what they represent. As a family dealing with little bitty kids and a life threatening illness they represent hope. I place a lot of importance on the events that pass us each year. Because each year without a transplant, dialysis or a life threatening hospital stay means we have more time before crisis. Thinking that a crisis is lurking around the corner in some way is my own Chronic Illness Readiness Exercise (TM) I suppose. So I always love to realize by the way of photos that we are another year down the road and safe and mostly sound, all four of us together.

Here they are. Reflective Gage. And Sweet Quinn. Times two. At the same little home town parade in a little city we love a couple of years apart.

I think I mentioned some time ago that I am a picture taker. I’m not sure if I would take as many pictures if they weren’t sick kids with an uncertain future. I have an inherent Need. Desire. Thirst. To record their lives in pictures. I admit it. I want all the events, holidays and even the day to day activities captured on digital media (how much better would have "film" been at the end of that?).

So here are Easter Sunday pictures. We were actually early for church this morning and the kids were cooperative. I have portrait style and rapper style for your viewing pleasure.