Not the kind you think of though.

I’m referring to NBC’s show ER. If you watched it, you saw a girl who received her father’s kidney due to PKD. The kidney, after two years, was damaged because of a new-on-the-market drug that was prescribed to stop her from having seizures so she could live a more normal teenage life.

The drama hit full impact when the father killed himself to save his daughter – allowing his other kidney to go to her. Her “perfect” match apparently because she had O blood type (both of our kids’ type) with hard to match antibodies. He thought if he didn’t do it she would have to live several years through high school and college on dialysis while waiting on the national list for a suitable donor – if ever.

The “reality” impacted me on a couple of levels. Although drugs are out there to help the kids for many symptoms – can we be certain that there won’t be an impact that will cause regret later? No. It’s distressing to know that you really just never know. “You never know” – sometimes I feel like we’re the poster family for that saying.

I understand the father’s decision – the emotion. The desperation of wanting a life filled with possibilities for your children. I can’t say I dwell on what could happen in the future in our day-to-day lives. But it’s there; it looms like an impending storm. Most days I’m so busy caring for their current needs that the long term problems just aren’t so in my face.

Every once in a while something triggers a strong physical and emotional reaction in me. The reality of the kids’ future hits me and knocks the breath right out of me and makes me gasp for a second or two with tears stuck in the corners of my closed eyes.

So do me a favor – thank your family, show your love to the people in your life, make amends with a friend, hug your kids extra tight more often, take a day off work to play with them, plant a tree, forgive someone, volunteer at a children’s hospital. Live big. Appreciate today.

Because folks, it’s true. You just never know. That’s all I’m saying.

When you are raising kids with special needs, you are required to wear many hats. Medical and educational gatekeeper, nurse/doctor, personal assistant, pharmacist, lawyer, therapist, advocate, nutritionist, high up tight rope walker, and of course, Mom.

I’m positive (she says sarcastically) that the doctors absolutely love it when I question a test being done or not being done, or when I question a med change affecting other aspects of the body because I read an adverse effect of the drug in something like .00001% of people who take the drug. I freely admit that I’ve never been to medical school and haven’t a clue about drug interactions.

So, the Advocate was out and ready. During the Fall I started the process of getting our paperwork gathered to request a visual assessment by the school system for Gage. Right now, we have several ideas about his visual needs, but nothing for certain. OMA is not considered a visual impairment (um…okay) by government standards. And it’s rare. Never heard of in our school system. Even so, together with his teachers we have implemented several things we think may help (based on input from my friend T’s son, a family I met on a message board, who has OMA) but I felt he still needed to be visually assessed. In October I had Dr. Eye write a letter explaining the need for such an assessment.

Just before winter break we had a regularly scheduled IEP team meeting to discuss Gage’s progress. Two days before the meeting I sent an email to the lead special ed person (Interrelated Teacher) at the school to tell her I would be challenging the school board’s position on not to have a visual assessment on Gage and would appreciate any input on the best way to challenge that decision.

Meeting Day

Picture me: Ready with binder with several sheets of paper dedicated to the effects of OMA and how to help Gage, a letter from the eye doctor saying he needed a visual assessment even though he can see 20/20, a lawyer’s name, a small piece of paper with my list of items I felt needed to be discussed, and a book titled: The Complete IEP Guide, How to Advocate for Your Special Ed Child. And I was ready. I had read the appeals chapter, had my notes in hand.

Picture them: sitting around the table, 4 of them, welcoming me with smiles. One of them was the Special Ed director for three schools including ours. She was warm, understanding and helpful. She took the Dr. Eye letter and said she needed one more form filled out and she would check with the County. Within a week of the meeting we had our answer: Yes. Visual assessment would be done.

Something is very, very wrong.

That was easy.

Simple.

Hassle-free.

Uncomplicated.

And a completely lovely way to start the year.

Dear Gage’s Teacher,

This time of year is as fitting as ever to tell you how thankful we are that you are in Gage’s life.

Last year around this time we were finishing up the details on Gage’s IEP and figuring out if our neighborhood school could serve him. We knew we would need to move. By February we were visiting schools in this area and searching for homes. Fast forward to July, and we were getting settled in the area.

We knew we liked this school for many reasons. Caring staff, involved PTA, and close and convenient to our friends and family – who support us a lot in the trenches of Gage and Quinn’s care.

What we didn’t know is how special a place it was. How when we talked about Gage, people listened. They wanted to help enrich his life and help him be successful. And so many times already this year, we have said, that we moved at the right time to the right place.

I can’t communicate properly how special you are as a teacher and how I feel that fate has put you with Gage for very specific reasons. How you care for him (and are stern too!) and your loving teaching style with him has helped him make this transition to school. As you know, he has had so many struggles physically and emotionally this year with learning and increased medical treatment and testing, and I know that you have helped him immensely adjust to his new life.

Every time there is a new test, treatment, or his kidney function decreases we suffer a loss. And we always need some time to adjust to the realization that as each day passes, we’re closer to a transplant for him. So in addition to Gage’s many adjustments, you have treated us, as first-time Kindergarten parents of a special needs child, with respect and care. And you have no idea how much I appreciate that. 

Over the years since Gage was diagnosed with the vision disorder and the kidney disease we have seen numerous people regarding his care and development; therapists, doctors, teachers, evaluators and psychologists. And I can assure you that I will never forget the manner in which you have treated him and us.

Thank you for impacting Gage’s life, and ours as a family, in such a positive way – we will never forget that or take it for granted.

Gage’s Mom, Julia

1. Hope springs eternal.
2. Kids, no matter what you bribe them with or tell them, will never welcome needles of any kind.
3. Appreciate excellent Doctors. Compassionate ones. The calling. The training. Their understanding (okay, that’s several things).
4. There’s a reason we say marriage vows. You know – that “in sickness and in health” part.
5. Always follow your intuition. Even if it’s just a nagging little gut feeling.
6. Teachers are the most underpaid and underappreciated people in the world.
7. The capacity to bear bad news grows.
8. The support of friends and family, long after the crisis if over, is an enduring treasure.
9. If everyone in a random group of people put their problems on a table, I’d take my own back (Indian Parable).
10. It’s okay to grieve a new symptom or treatment. It’s not okay to get stuck there.
11. Appreciate that kids have a way of making you realize the world keeps going on.
12. Appreciate surprise friendships born out of crisis.
13. Keep copies of absolutely every piece of paper that has to do with educational and medical needs.
14. Thank God everyday for the people in your life that make raising your children a little easier.
15. And make sure to thank them too.