I am in DC at the airport about to leave to go home having just spent the day telling politicians from our state our story to raise  awareness about PKD.

The meetings were set up by the PKD Foundation. About 50 (?) people flew in from across the country to talk with their legislators about these issues relating to PKD. Included in this weekend was a board meeting and committee meeting for which I am a non-voting member.

I am not the most comfortable lobbying for PKD. I have the desire, but I am very intimidated by the entire process. In today’s case, the Foundation’s Government liaison made it extremely easy. He set up the appointments, he provided written materials for us to work from, a map of the office locations, and gave us a quick training session on the discussion items for us to cover.

I was still intimidated. But that’s okay. Lobbying is an important step in being an advocate for the entire PKD world as a whole. I realize that research funding and advancements won’t help Gage and Quinn’s disease progression. But that isn’t really the reason I did it and hope to continue to do it – I do it as a way to honor their resilience at what they have been through and will go through in the future. I do it as a way to honor the many other PKD families that have helped me in the past become a better advocate for Gage and Quinn. And I do it for the families in the future that will be faced with this disease. And I do it because I think it would be incredible for Gage and Quinn to see a treatment for PKD in their lifetimes. And wow, to be a part of that would be amazing.

I love this picture of the kids. This was on the day we were leaving the hospital to come home after Gage’s transplant and Gage and Quinn were feeling particularly silly. It was when I took this picture and they were squealing with delight upon seeing the picture that I thought, for a little while, everything might be okay.

Gage also smelled as bad as he was going to smell through this whole thing. Yikes!

We were driving today after Gage’s Transplant Clinic visit and we passed by our new pharmacy when Gage says:

"I thought there would be a red barn in the middle of no where, with cattails and that if we drove there we would drive through the cattails."

As in FARM-acy.

Gage’s favorite color is yellow. Ever since he could talk he has expressed his love of yellow. Granted, he couldn’t really pronounce it until this school year (he’d say "lellow"), and that completely drove his speech therapist crazy, because you know, IT’S HIS FAVORITE COLOR and he says it a lot but everyone who knows him knows this bit of Gage trivia.

So when I saw the following announcement that was just sent from the PTA to the parent’s email database, I started crying. I think the reality of him returning to school NEXT MONDY hit me hard because it is the exhale that this chapter that is playing out isn’t so horrible. There weren’t dreaded complications for Gage or Jody, Gage has adjusted emotionally better than expected, and Quinn is returning to her regular whiny 5 year old self instead of her magnified whiny self. I started crying because I realized that Monday my boy gets to go back to some kind of normal routine without a machine to keep him alive. I started crying about the community – in every sense of the word – we live in and are lucky to call home.

Three years ago when we moved to this community I know it was the right move for the kids educationally. Before buying our house I had interviewd three public schools, I talked to many parents with kids at those schools, and I talked with neighbors on our potential new street. I was sure that one of the schools was a good fit for Gage and Quinn’s educational needs due to ocularmotor apraxia and the special needs of care related to ARPKD. 

I had been concerned that we had missed the years of friendship development that often comes with baby strollers and church preshcool programs where family friendships are formed when kids click. I had wondered when we hit transplant with the kids how supported the kids would feel in our new community.

Years ago when we decided to be public about Gage and Quinn’s disease and special challenges it was deliberate. Part of it was to raise awareness about Polycystic Kidney Disease. We’d received a ton of support from the PKD Foundation and I wanted more people to know about them and their committment to research. I wanted to help families in the future faced with PKD not feel so alone. And I wanted the kids to grow up and not feel any shame about having PKD/OMA. I thought that if we could be comfortable talking about it then they would too. In part, I thought that when times got tough for them that they would have peer support and I thought that would be important for their self-esteem and friendship circle.

What I didn’t expect was an entire school community to embrace us. I didn’t expect for cards, presents, and handmade notes (on yellow paper!) to arrive almost daily. I didn’t expect for food to arrive (and continue to) at our doorstep to give our family a break in that area while we get our feet planted in our new routine. I didn’t expect that other moms would stop me while I dash in and and out of school to say they are praying daily, or that a picture quilt would be given to Gage as a reminder that he is still part of a class, or that marque signs would wish Gage well the week of his surgery. I didn’t expect that Gage’s class and their parents would send Gage weekly buckets of love filled with little suprises to help with the bordem.

I didn’t expect that seeing the word yellow today would make me cry. I feel part of this community more than I ever thought possible. And it makes me believe that Gage and Quinn will be supported for what may come their way in the future. There are no words to express what that means to their mother.

My boy is doing great. Just last week his doctor said that if all is still going as well he’ll be able to return to school a day short of 5 weeks since transplant. That means next Monday. Gage is excited about returning back to school but he admits he just wants to see his friends. He would like very much to not return to school work.

During the course of his disease progression he’s had to endure many shots. For over two years he was on EPO for the severe anemia. EPO allowed him to have enough energy to play and we’re thankful there was a suitable treatment. In addition, he started growth hormone shots to help his little body catch up. The non-functioning kidneys have taken a toll on the boy who, when he was born, was in well over the 90th percentile and lingered just below the 5th percentile before dialysis. 

So over these past couple of years Gage has had many Band-Aids to cover those needle punctures inflicted by me. He loved to take them and make stars out of them to adorn his bedroom and more specifically, his bed. The night before Gage’s transplant I’d told Gage that he wouldn’t need shots for a while and that we could take the stars down. He said "No Mommy, I like them. I like to remember."

Fair enough Sweetie. The stars are still there today and I assume will be there for a long, long time.

A girl name Shania got a new liver last night. Shania has ARPKD with more complicated CHF (liver part of the disease) than Gage and Quinn. So for her, liver is the most affected right now. It’s sad that there is a family greiving for a loved one lost, but Shania gets a chance at a better life. What an unselfish act from the donor family.

Get well soon Shania. And hang in there Mom Laurie. It’s pretty good on this side of transplant. We’re thinking of you.

I’d like to point out to you that it is Friday. The actual day of Friday Photo Fun. And it’s the day I am posting the photo. I realize the Internet frenzy (from Grandma and Jody) around viewing this photo might shut the blog down, but there you go.

Dr. Wonderful sent these balloons and "Tiger" as Gage calls him the day after we got home. You have to admit that is pretty remarkable, right? Is it just me that has a high school friend crush on her for her smartness and for her being very cool to know?

And I must make you notice the soft blanket made by someone very, very sweet who also got the "gift of life" from someone I think is pretty swell too. Thanks (insert your name here). It’s warmed him up many times during his recovery.

"It."

It’s been three weeks – three short weeks since I went to the hospital very early in the morning with my husband and 14 year old daughter. The weeks and months leading up to T (transplant) day were not easy and there were several times I wanted to say “WHY ME?” But in the end, I knew that it was “Why not me?” when it came to giving an innocent little 8 year old boy a chance at true living.

Not once during the donor matching process did I waver on donating my kidney, though early on, I truly thought I wouldn’t be selected. My reason for responding when Julia asked for donor volunteers? It’s simple:  I’m a mom with healthy teenage children and I put myself in Julia and Julian’s shoes. I couldn’t imagine what life would be like with a daily medication regime and doctor visits. And what if my children could not do things or go places because a machine dictated their schedule. And how painful to know that as a parent I couldn’t help my child because tests said I wasn’t a good donor match. 

So after prayerful consideration and in talking with my family, I took a step forward and said, “Julia and Julian, I get IT. Because life is precious and if I can help, I’m here. “ 

It’s 21 days post-T day; I’m a little sore and a little tired and I have one 3-inch scar and three smaller marks on my abdomen. But also today there is an 8 year-old boy who, with his mom and dad and little sister, and his grandma and grandpa, and a host of aunties and uncles and cousins, can live his teenage life to the fullest with a gently used kidney.

And it is my prayer that when someone else is asked, they too will be able to say “I get IT” and will step forward to donate life.

The tragedy at Virginia Tech has quickly removed any remnants of self pity I had for the experiences we’ve been through and will go through. Today, it is gone.

Early in the diagnosis of ARPKD I used to wonder if Gage and Quinn would live to make it to college. Now I wonder how safe will it be when they get there.

Prayers for peace and understanding to all.