“You get what you get and you don’t pitch a fit.” Teachers everywhere. Haha.

Gage and Quinnlin are winding down at school. Gage is finishing his 1st year at middle school, which is, I don’t know…kind of amazing. When he was fighting the affects of ARPKD and those failing kidneys it seemed like 6th grade was a long time away. And it was somewhat because these have been the longest years of my life, but now that it’s here and we’re able to enjoy the fruits of his labor, it’s pretty exciting. He has excelled at this school. While I may have some personal issues with private school in general, we knew it was the right decision for him. It’s too bad he won’t have any college money available though. It was a good year for him. New beginnings and friends and a chance to join in where he otherwise would not. The kicker of the year was 1st place in the science fair. Exciting stuff.

Quinnlin is ending 4th grade and doing really well. She’ll tell you she isn’t doing well because she is never asked to be in the gifted program or on the principal’s list (straight As) and the differences issue is still a hot topic, she is entering the summer with a good circle of friends and a BFF she has plans for pool time with and a week long beach trip with a longtime great friend.

Can I just say standardized tests are evil? For kids like ours, who are smart, they don’t really show their smarts. It’s frustrating. While I know this going into each year, I still hate it.

I seem to be really emotional lately and tearing up about things like…science fair wins, 4th grade celebrations, puberty, Gage saying he likes me, and oh, more stuff. But you get the idea. Is this normal?

I am having a great time working with Build-A-Bear Workshop helping tell the story of families touched by special needs. We’re doing that by telling Quinnlin’s story with her bear, Champerina and we’re sending Champ around the world. He’s been to Canada, Slovenia and just landed somewhere for more fun. Please go check out Hana’s story of Champ’s visit and tell the fine bear keepers at Build-A-Bear Workshop thank you for supporting Support for Special Needs in this awesome way!

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There are so many little things to learn about kidney failure and transplant that you don’t think about until you’re faced with it at transplant time…

A great example is that if they can, surgeons leave the old kidneys in place. I advocated to remove 1 in each of my kids but the doctor’s choice would have been to leave them in there to “shrink up.”

The new kidney is put in right above the groin area. Both my kids said it felt “weird” like it was a foreign object. That feeling lasted a few months but even still today Gage says he can tell something is there that wasn’t in there when he was born.

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It’s procure not harvest.

It’s living, unrelated related donor. 

It’s deceased donor.

Also? I think I could get a job consulting on television shows about how to handle kidney failure, kidney transplants and dialysis.

Hire me!

I’m talking to you Private Practice. (“Harvest the organs.”)

I’m talking to you Army Wives. (“Dialysis is life-changing not life-threatening.”)

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Figure out your must haves and find the best doctor. It doesn’t have to be a doctor that even is the right choice for everyone else (our new one wasn’t recommended to me, I found him by search ye’old Internet and did my research on his history). Set up your own criteria and find someone that fits into your needs. Go with your gut. For kids with a chronic illness, I’ve found a good doctor to be one who is well-schooled, open to learning, works as a team/listens to my input, and has a good bed side manner if we’re going to be seeing them a lot.

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Here’s her transplant story here.

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I honor my mother today. My mother who has mothered a special needs mother so eloquently. My mother, who has watched me mother children who’ve been in pain and sick and falling apart at the seams. Somehow she sat back when she needed to and was there for me before I knew I would need her. She has made me a better mother by her mothering and I am grateful.

There is something though about being a mother of kids with special needs that binds us together, you and I.

I feel a kindred spirit in you when I see that you’re struggling, I do. There’s little I can do but listen, agree, and nod my head. I can send prayers or good wishes your way, hoping you’ll find comfort in the thoughts. I feel your energy when you do the same for me.

When I watch you hurting for your child I feel your pain in my soul because I know that it could easily be me on the side of that pain. When your child is sad, or sick or bullied or trying to survive an episode I think about how impressed I am with your skills to maneuver around it or through it with agility and grace.

You amaze me. When we hear people say, “I couldn’t do it.” I think about you and how both of us probably thought that one day a long time ago, too. It was before we were the ones fighting with insurance, keeping our emotions in check, or playing therapist for our kid. It was before we managed an educational team, or even knew what IEP stood for or learned about medication we never thought we’d be able to pronounce. It was before we cried at night, or stood outside the hospital room our child was in trying to catch our breath.

There was a day when we were oblivious too, I suppose. I guess we didn’t understand that we’d be able to quickly feel connected to another mom who has parenting challenges. I think there must have been a time when we couldn’t imagine that we’d look at “typical” parents and think, “A kid appointment once a year? I wish.” Certainly there was a day that we laughed at the thought of hitting our annual insurance deductibles by March and we never even gave it a second thought that insurance wouldn’t cover something our kids needed. Those things never crossed our minds.

Before we met, you and I, I felt alone. I felt like my friends and family, who love me fiercely, didn’t really understand what I was going through, no matter how much they tried. I, like you, were probably also at a play date where it stung just a little bit that the other kids were running around, completely on target a proven by all those (now) stupid baby books. The alone part wasn’t so much a part of my life when I met you.

Some of our views aren’t the same, but that doesn’t matter to me because I think you are an incredible parent. Instead of trying to get your kid to fit into the mold of the kid you imagined, you became the mother that was necessary for the soul that you call yours. You’re the mother that your kid needs.

I don’t care if we know each other or not. If mothering your child is a challenge for any reason, I honor you today. Mothers of kids that can’t walk or talk. Kids that look different, sound different or act different or all three. Kids that fight for their lives and kids that fight to belong. Mothers of kids who need us to hold them and the kids that won’t allow us to touch them, I honor you. I honor us.

We have big hearts that hold love and pain and sometimes our hearts do that in equal parts at the same time. We’ve learned the delicate balance of living with fear or sadness but still enjoying the beauty.

To all kinds of mothers, I hope your mother’s day is everything you want it to be and I hope you are being honored in person. Know you’re not alone. On this day or any other day.

You’re enough. We’re enough.

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He won. For 4-8th graders he won the blue ribbon. We were so thrilled and happy for him. He hasn’t had many wins like this and it was extra special because of his desire to learn about science.

It was a good day. Here’s a video of him telling one of the judges about it and from what I hear the judges were mightily impressed with him! He got really high scores and two of the judges stuck around for 20 minutes after it was over to talk about why the ball went farther on one of the variables.

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For us, Gage’s was immediate because at that first visit with the team his kidney function had dropped dangerously low since the labs 62 days prior (his paperwork was lost and it had to be redone by our nephrologist, so this added probably a month’s time). By the time we got to the evaluation Gage needed dialysis and started roughly 2 1/2 weeks later after another bad rise in his labs.

Quinnlin was not as sick when she was referred but her quality of life wasn’t so great. No energy, she was losing education efforts and time, she was up all night scratching her itchy body to the point she bled and her numbers were creeping in the same pattern as Gage. Since that was the case, it was fair to assume she would also have a quick decline like Gage so I wanted to move on her transplant as soon as we could. She was denied by the team for a transplant. They explained we’d watch her and have a year to keep this evaluation on the table. So I went for a 2nd opinion and we moved – for a time anyway – Quinnlin’s transplant to UAB. Our center came back and said they’d go ahead and file with insurance, not really thinking they would approve the transplant, but they did and so, there you go.

The evaluation process takes a long time from that to transplant. Here anyway. Our donor center’s timeframe was about 3 months for both of our donors. They moved Julian (first one tested) in about 6 weeks, a rush, only to find strange anatomy (figures).

A lot like anything in the special needs world, it all takes time. Sometimes you have it to give and sometimes you do not.

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For our kids their transplant surgery recovery took about a week. Our first donor, Jody was in for 4 days and Cheryl, our 2nd donor, was in for 2 days. Cheryl heard that if you turned down heavy drugs, it’d be easier to break out of the hospital. She only had tylenol.

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