My Son’s Successful Kidney Transplant and My Grief

I spent a weekend away with my husband, Julian, to celebrate our wedding anniversary. We had a great time being together and we incessantly rested. We liked being free of all parental responsibilities but mostly we enjoyed both being off med duty. “Med Duty,” as it is called in our house, consists of administering some 20 medicines, twice daily to our two children, who suffer from Polycystic Kidney Disease (PKD). Quinn, age 5, receives medicine to ward off symptoms caused by the disease and Gage, age 8, receives medicine to keep a recently transplanted kidney where it is desperately needed: safely inside his body.

Coming back to the real world where well-trained hotel staff were not smiling at me simply to make my day better and doing their best to please me with the opening of doors, providing chocolate-dipped strawberries with champagne, and cleaning up after me for a couple of days is harder than I thought it would be. It solidified my below-the-surface knowledge that my post-transplant traumatic stress disorder is alive and well. Slowing down for two days gave me time to start grieving. I’ve been so consumed with my son’s care and being grateful that I had forgotten that sadness is a part of raising these kids. I was so thankful to our donor, the surgeons, hospital staff and the people who took care of us that I didn’t have time to process the sadness for all that should have been for my children.

It was barely a year ago that Gage was in acute kidney failure and it was time to start the process of transplant evaluation. His emergency life-saving dialysis, transplant surgery, the many ups and downs in-between, and the fact that a family friend gave my child a chance to stay alive without the help of a machine has left me emotionally spent.

During the best of times this year, I was touching finger tips with Jody, a mother herself, just hours after she gave my son a kidney, while her husband smiled and said, “I feel so connected to you all today.” And at the worst, I was wondering how my son’s funeral would be planned should he die from complications. At my best, I enjoyed watching Gage feel better on dialysis and thrive after transplant, and snuggled with Quinn on a rare day I could focus my attention toward my much-neglected “medically stable” child. At my worst, I was crying about the pressures of raising two sick kids while working and juggling the standard demands of a family and not living in the moment.

I have fears voicing that I am emotionally raw from our recent experiences because I believe I must remain the pillar of strength for those who love our family. I should be grateful and happy; after all, we’ve received the “gift of life” and what we had wanted for so long. I can find no studies that address the natural course of caregiver grief when a reprieve occurs – say, after a life-saving treatment (like transplant surgery) – to judge if these feelings are normal. While we are celebrating Gage’s transplant and recovery, it makes the point more clear that his life, and Quinn’s, are still full of challenges I don’t want my children to endure. With transplant, we’ve exchanged one set of problems for a new, different set of problems.

In my life of raising sick kids there is no relief, including when the kids are stable and thriving. Every time a new symptom is revealed or a treatment is needed, I grieve. It also means their survival and quality of their lives depends on my tenacity as their mother, their caregiver and advocate. Their disease defines me as a mother.

Every single day and especially since Gage’s transplant, a fundamental life issue for my children is in my thoughts. While transplant is the best available treatment, it does not cure PKD. They will likely both need liver transplants while they are young adults. Their life-long anti-rejection drugs can make them susceptible to cancer and life-threatening infections. Their self-confidence is at risk. They each will need more than one kidney transplant to live an average lifespan. What about Quinn’s reproductive choices? I worry we have spent our kidney good fortune on Gage.

Their career options could be limited due to health insurance, which means they will probably not have the opportunity for self-employment. I am concerned about our ability to pay for future medications when Medicare hits its limit and our insurance denies paying for the very drugs his new kidney requires. Having PKD has changed who they could have been; it’s robbed them of potential I can no longer imagine.

Some days I’m able to push these feelings beneath the surface while we live our daily lives. It is a struggle to live in the moment being grateful, while at the same time balancing today’s challenges and tomorrow’s worries.

I am deliriously happy about my son living without a dialysis machine because of a friend’s generosity. I am also equally sad about my children’s challenges, uncertain futures and what is required of me to help them reach their potential. I’m sad that I am unable to only see the pure goodness in Gage’s transplant. I also see the grim possibilities. Pure joy and complete sadness can co-exist. And they do inside of me.

Dawn pushed me to write this essay. She and I were talking one day about this content being a post and she said “write it all out and send it to me.” Soon after, she convinced me that it had the guts of an essay. With her encouragement I finished it up and sent it to a couple of pubs with no luck to get it published. But I’m ready for this to be out in the universe instead of the computer and the brains of a few people. I think that it was good to get this on record for the historical perspective of our family. Better still, I was happy to work through the feelings of grief on paper. I’m in a better place since I wrote this, but I’m not yet at the place where I am saying “I feel so much better now! I don’t even remember feeling like that!” – and I won’t ever be I’m sure, because the basis of my grief are elements from our everyday world.

So this is my last day of the commitment to post every day as part of NaBloPoMo, or as Dawn says: NaBlo-whatever.

My Quinn is graduating from physical therapy! Her therapist (the lovely and talented Ms. K) sent me a note to tell me she thinks we can stop therapy before Christmas and do a check up in a few months to just make sure she is still on track.

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I have to tell you I don’t know what we will do without Ms. K in our lives! She’s seen Quinn since she was 4 months old. It’s a huge milestone for Quinn after a long haul and a ton of work. I marvel at the girl and her accomplishments! All of them! She reached her milestones on her own time with help; lifting her head at 4 months, rolling over at 7 months, sitting up at 9. At 13 months she could be on her hands and knees and rock. She stood late, cruised late, and walked late. Just this year she learned how to hop. With both feet off the ground.

But I’m certain of one thing. If not for Ms. K, Quinn wouldn’t have accomplished what she did, when she did.

It’s been amazing to see their relationship grow from baby, to toddler and now little girl. Through all the challenges, schedules, remarkable strides in motor skills and during Quinn’s resistance too. Which, really, wasn’t very often. Quinn must think that Ms. K is pretty special. And so do I.

Ms. K, we love you and thanks for giving Quinn exactly what she needed all these years.

As a parent to two children with a disease that requires life-saving surgery I am aware that they can die young.

These thoughts most certainly shape me as a mother. As it is with most parents I know, it is my goal to give my children the life I believe they deserve. A life with possibility and all that implies. One with opportunity to be productive, happy people who are compassionate and giving, one where they are loved and love. Since the Gage and Quinn’s well-being is top of mind I try to pack a full life into days, weeks and months.

I do wonder if somewhere buried in Gage’s soul (his particularly) lives the knowledge that he is not long for this world. I’ve often thought that he lives his life times three in each experience he has because of some subconscious level of knowledge that he will not live very long. His personality is such that he must do it all extreme at every moment of every day with a get on with it already (!) attitude.

Do other parents of sick kids think of their child dying? Or do they believe that thinking it will make it so as one friend suggests?

Parents just don’t go around thinking their children will die. Or maybe most just don’t have to. Or maybe parents of sick kids try to make the conscious effort not to think about such things. Or is it just wrong to voice it? Most people in my world can’t handle such discussions, including Julian. I think he is with the camp believes that thinking it can make it happen.

Through meditation and prayer, I’ve come to believe my role is to help the kids experience all they can with the knowledge that their lives can end at any moment and at the same time truly believing with all that I am that they will survive an average lifespan. While I cannot imagine my life without either one of them in it, their fragile lives propel me forward to help both of them live a life fulfilled. That’s enough for today.

About a month ago I had a meeting with a bunch of people involved in Gage’s education. It was his annual IEP review. The meeting was long, came with 7 people, Julian on speaker phone and was about a week and a half after a meeting went bad with one of them. I was still feeling sad about the bad meeting because I hadn’t actually gone into the meeting with any agenda with this person that I like and respect and thought I was there at the request of this person to provide suggestions on working (behaviorally) with Gage based on a series of email communication about Gage. I won’t go into specifics, but I left, upset and unsettled for a long time (still really) about what had transpired.

Back to this review meeting…at the meeting we discussed how Gage was behind in a lot of areas but we all agreed that the underlying problem was reading. Because he is behind in reading he is struggling in many areas, including math (written problems). At the time I addressed concerns about Gage being removed for more special ed time because he needs the time in the classroom with his classmates (still working on that socialization) and he and his teacher have found a grove. His behavior is “controlled” as they say and we all agree this is a good thing. She keeps him in check. So we discussed upping special ed time (one-on-one) in the classroom during a time that other students are working on reading. During this meeting that lasted more than an hour and a half I repeated at least three times that as I understood it we all wanted him to have extra special ed time, in the classroom, “Right? Is that what we are saying?” and everyone agreed. The person in charge of the IEP (special ed…or “Interrelated” person) tried to talk it through to figure out how to get someone to the classroom to work with him during this specific time of the day to no avail. They mentioned maybe getting a 5th grader to come assist him and while that sounded appealing (peer-to-peer) I didn’t think this was a good solution for trying to get Gage up to speed at this time. We decided to reconvene when they could look at how to make it happen in the classroom. I felt as good as one can hearing (for the thousandth time) how far your child is behind in school with the agreement to come together a week later to sign off on what could be worked out.

A week later when I checked back they told me they wanted to pull Gage out of the classroom instead and get him to the special ed room for more time. I was surprised because that wasn’t what I had clarified and everyone agreed on during the big meeting day. One teacher said she felt put on the spot to answer that way, which confuses me still, because it was a brainstorming meeting I thought. Everyone was participating, offering their input about him and the issues and I didn’t feel like it was confrontational at all. I stayed in check with my comments, feelings, and as Gage’s mom, sincerely tried not to take everything so personal…on his behalf. In fact, I felt, as I do always with Gage’s school, that they have his best interests at heart.

So, they presented three new programs (computer, self-directed somewhat – I know, I did kind of laugh at that given Gage’s behavior challenges – then testing, scoring and charting for visual progress) that they assured me they would monitor Gage and make adjustments. But they felt strongly that this is the way to go for Gage. I pushed for making sure we have a way to measure his progress and also have a cut off date to do a serious evaluation of his progress so we can modify the approach if needed. That will happen before winter break. I’m comfortable with this at this time.

The truth is?

I trust them. They are a group of talented, caring, smart educators and the truth is they know more about Gage’s educational progress as compared to where he was at the beginning of the year. They know more about educating my developmentally behind, kidney-challenged, spirited boy than I do.

The truth is also…

That I am tired of going around and around about it in my head. If I am truly honest with myself, even if I believed that he should have help in the classroom instead of being pulled out more, I can’t say I would have fought for it on that day. I am feeling very vulnerable about what I say and how I say it right now so maybe my agreeing to this plan is a little bit of trust and a little bit of tired.

And that is hard to admit to myself, because I try to do whatever I can to make sure Gage is getting what he needs educationally. I try to stick to the best advice I ever got about what to think about education and the kids….to remember that Their Right is Reasonable Access to Education. Repeat. Remember. Repeat.

It’s just so hard. Hard to watch my boy struggle. Hard to navigate this world of education and educators. Hard to place trust in other people, knowing that they don’t know him and love him like I do. They don’t believe in him like I do. That they might not see the special something in the eyes of the wild boy that I do. Hard to realize sometimes that Gage was dealt a crappy hand of challenges all-around and he will always struggle in some way to live a “normal” life…and this is just more proof.

It’s no secret that Gage’s school was about as supportive as a community can be to a little boy and his family in medical crisis. They shared our fear with the impending transplant and they shared our joy over Gage’s remarkable recovery. They were unbelievably supportive of Gage by giving him a send-off party, signs, gifts, cards, and a yellow-ribbon clad school on the day of his return back to class.

This month as part of a Being Thankful theme the PTA arranged, they are including Children’s Hospital dialysis unit as a beneficiary. They have asked families to donate new DVDs, video games or monetary donations to the unit in of honor Gage.

How mind-boggling is that?

So, Gage and Grandma bought 4 movies and I’ll be sending in a little money for video games for the Nintendo Cube games they need.

The kids on dialysis typically have about 3 1/2 hours of time to fill. In our city, the high schoolers are usually on the early 6:30am shift giving them time to get to school and have a decently full day. The babies and toddlers are usually in the mid-day shift because they don’t have school and the elementary kids get the afternoon shift that begins at 2:30 and runs to rush hour traffic. The times that Gage did the early shift I noticed most of the high schoolers slept. Because that’s what teenagers do. The babies/toddlers nap/watch TV and the older kids, like Gage, do homework, then are left to watch a movie, TV or play video games.

I must say that the movies they had while Gage was there were slim pickings (although Gage was usually happy with a Scooby movie or cartoon) and there weren’t plenty o’video games either. So this gift of movies and video games? Will be enjoyed immensely.

I would venture to say that every children’s hospital in a major city has a dialysis unit. If you want to do something nice for a children’s hospital unit not always in the foreground of the media attention; the dialysis unit would be a great one.

Larger hospitals will have a Child Life Specialist and they would be a great contact for knowing what gifts they can use in the department. If the hospital doesn’t have one, then a Social Worker for the department would be the contact. Sometimes they can use party supplies for a holiday, trinkets to giveaway, or birthday gift bags for the kids. The hospital teacher, if there is one, can use some things too for helping the kids stay motivated for their school work if not regular school supplies.

So Gage’s struggle has led a small, public, community school to reach out to some other kids faced with the same struggles. It overwhelms me in a way that touches the very soul that loves the boy with the mischievous grin. And the dialysis unit that kept him alive.

Jody, have you noticed that it’s been 8 months? Because it has. Today, the 27th, marks 8 months of yellow pee for the boy.

It’s the small joys along with the large ones that make this journey so interesting, no?

We love you. And your wonderfully behaving, gently used kidney.

I still love you (really, really love you) so don’t take this the wrong way, but…

For the 2nd time in a row, I have brought my boy to the transplant floor for labs and there weren’t lab orders. Eight months ago (tomorrow) he got a new kidney and we have been there no less than 75 times since the gently used kidney was hooked up. So, we’re pros, I know.

But I still haven’t figured out that I should get a copy of lab orders and have them with me at all times! This should have been on our list of DOs and DON’Ts that we were handed as we wheeled our newly transplanted child through the safety of those hospital doors.

I know it doesn’t sound like a lot – I mean it’s just an 1 hour and 45 minutes. And granted, I get peeved pretty easily when we have precious time taken away from our lives, but Gage was missing school. School, people! Have you not seen his reading scores? Or his writing? The boy needs that extra two 1/2 hours in school, including travel time, trust me.

So today, when lab orders weren’t ready and we had to wait for almost two hours FOR A BLOOD DRAW it annoyed me. Well, truth be told a lot of things annoy me, but that is right up there at the top of the list of going to the hospital. So when I said Gage needed to get to school and we could come back after school today it wasn’t a threat, it was common sense.

I know, I get pushy when things like this happen, but am I supposed to just make Gage wait? I mean you’ve seen him right? You’ve seen him race the wheelchairs, lay on the floor right and push the wheelchair door button three-hundred times right, literally running around in circles around the staff offices and counters? Because that is what happens when things aren’t routine and we linger there. And let’s not mention that I had to bribe him to sit still for the draw because he was not really feeling the love that long into the process. So, when someone rushes him and says “Gage, come on…Gage, come on….come on, now Gage.” without taking a breath and a tad of time to connect with him, it really doesn’t help. I know it’s not your fault there were no orders. It’s not really his fault either. I mean I know we’re all human and people make mistakes and things happen. But don’t take it out on him, please. Because that annoys me too.

And I do understand, with as much compassion that I have in me, that you all have to do this same thing with 100 other kids this week and every week. I (seriously) could not do any of your jobs. You are stellar. I still love all of you. But this is just my one kid, my little knuckle-head. And I’m concerned with his well-being and his time. And his education. And I don’t want him at that hospital if he doesn’t have to be.

Thanks for your understanding,

The Management

Two months after Quinn was diagnosed with ARPKD I called the PKD Foundation to see about starting a chapter in our large city. I thought it was ridiculous that there wasn’t a chapter here for people (like me) to call and get support when faced with a PKD diagnosis.

Back then, the PKD Foundation was desperate to have volunteers start up chapters and I was a warm body. You get the idea. I had to fill out an application (one of the first that they required for this volunteer position) and was interviewed by the Foundation’s staff person as well as two other volunteers. At the time Julian said that if they didn’t offer me this volunteer position I had big problems.

A day after Gage was diagnosed with ARPKD the Foundation called and offered me the position and I said yes and that was just about 6 years ago. The main reason I had wanted to get involved was completely selfish. I wanted to be on the front lines of research (I am). And I wanted a straight line to doctors who were interested and knowledgeable about ARPKD should I need them (I did and still do) and I wanted to have friendships with other people affected with PKD (I am, and my cup runneth over).

I love the PKD Foundation and what they do. I feel a huge sense of responsibility to them because of what they have given me in terms of helping me be an informed parent and most importantly, an advocate for Gage and Quinn.

The positives? I’m a better parent of sick kids then I would have been, I have met people who have changed the course of care for Gage and Quinn, I have met friends that will be in my life for the duration I’m willing to bet, my kids have at the very least, real, live connections with other kids with ARPKD, it allows me the opportunity to do something positive in honor of Gage and Quinn, I feel that I make a difference and that is rewarding, our story is out there and it gives people new to the diagnosis hope, and it allows me the chance to stay on the front lines of information out there about PKD.

Negatives…well, I don’t get to do as much or give as much as I want to at times because of life. It takes my volunteer time away from the kids’ schools (which often makes me sad because I had always pictured me being that kind of mom way back when when I dreamed of children with my beloved).

I know. I’m kind of cheating. But give me a break, beside the Q&A I haven’t been too lame in posting, right?

My NABloPoMo post is really my Photo Fun Friday (I have my camera cable now!), late of course, and instead is serving as my entry for today as well. I know, clever isn’t it? It’s like a two-fer.

The kids insisted on wearing these head toppers to Thanksgiving lunch with a wonderful family that allows us to crash (it’s Julian’s mom’s brother’s wifes house, with all her kids and grandkids) their dinner (and while that is certainly the best part, also wonderful is that they gave us a plate of turkey to go!). I took this picture as we were going in and then before we got on the porch they removed them. The pirate bandanna and the captain’s hat – which I truly love on both of them. (click to enlarge)

A long time ago I loved to go shopping the day after Thanksgiving. I loved the crowds, the sales that started at 5:00am, I loved searching for a parking space, carrying handle shopping bags precisely packed with everyone’s presents, stopping for lunch, whatever it was, I loved it. A lot of times I would go with my sister(s) and Mom or a friend.

That was before these people came to live in my house.

You know the ones, right? They are so demanding. I know Julian is fine with me leaving the Friday after Thanksgiving to shop. He loves that I want to find a bargin. He loves that I want to get all the presents by the end of November. Well, love is a strong word since we’re spending a chunk of money at once, but he is still happy to only have to deal with getting me a present. I realize that the experience is what I like, the bragging rights to actually having gone out and done it on THAT day. I would love to be there on this day but sometimes my organized self isn’t as organized as usual in a way that allows me to go shopping this time.

We have about 20 therapits/tutors/teachers/healthcare people, 10 relatives, Gage and Quinn, and I have about 15 friends/kids to buy for or make gifts for. I had hoped to make more this year than I am able to but hey, those people living in my house make me tired and zap my creative energy.

While I am on the gift-giving issue…the past two years while we have been in a bit of a medical situation with Gage an anonymous person connected to a friend at our church provided the kids their “Santa” gifts. This friend insisted that the family wanted to take it all on, that their children were older and they wanted to shop, select and wrap all the presents. Reluctantly Julian agreed to this (I was fine with it immediately since, you know, I do all the shopping and wrapping). It was a luxury to have their gifts provided and wrapped and ready to go. We’d gotten bikes for them two years ago and this family provide bells and baskets and they provided scooby dvds and cookie cutters and books and baby doll clothes and tents for the kids. Last year they provided books and movies and a double baby stroller for the baby doll twins and a great kids cup cake cookbook and toys. The time they saved us (not to mention money) was a welcome gift during times of stress for our family.

We’ve passed on some of that compassion I hope in a way that is worthy of our anonymous benefactor.

Anyway, I’m going to miss shopping tomorrow. And over the weekend I will try to do the rest of the internet shopping I so love to do in the comfort of my PJs, diet coke in hand. Free shipping, 10-20% off, thankyouverymuch.

You deserve a more thoughtful post if you are indeed checking in on NoBloPoMo for me, but hey! I promise I’ll be more thoughtful soon! And Photo Fun Friday might be Photo Fun Another Day! Need to find my camera cable and a great, recent photo!