This blog is mostly about Gage and Quinnlin and their special needs. The kids, born with a couple of health problems…an eye disorder called Ocularmotor Apraxia and Autosonomal Recessive Polycystic Kidney disease (OMA & ARPKD) that they share and other issues alone to them. They both needed kidney transplants to survive. And probably more than one each to live an average lifespan.
We learned about PKD when our second child Quinn was born. A sharped-eyed ultrasound tech noticed enlarged kidneys at the last office ultrasound when we learned she was breech. During the manual flipping a week later the doctor noticed it as well. He instructed us to have her checked upon birth. We had an easy delivery with no signs of ARPKD breathing distress and we had no idea what the ultrasound would tell us: Quinnlin had PKD.
During the weeks that followed (a time I refer to as “The Fog”) we learned about the disease, the effects and her prognosis of a transplant early in her life. We were devastated to learn three months later that our then three-year-old (Gage) had it as well. The day after we learned about his PKD, I agreed to volunteer for the PKD Foundation and start their Atlanta Chapter. I’m thankful for the PKD Foundation and their staff for many reasons but most of all; being a part of it has made me a better advocate for the kids. In addition, I’ve made friendships with other parents who share our challenges.
Gage had declining kidney function at a slow rate for about two and a half years and went into the acute kidney failure stage over Summer 2006. The crisis stage happened pretty quick as we would come to learn so until transplant, Gage went on dialysis. Dialysis. That’s not a word I thought would ever roll off the tongue.
Until September 2006 it never occurred to us that we’d find ourselves with Gage on dialysis. The Plan - always The Plan, was to do a preemptive transplant using one of our (as his parents) kidneys. With both of us unable to donate we found ourselves somewhere we never thought we would be: long-term dialysis for our 7-year-old while we searched for a kidney donor from lovely friends. Four were willing to be tested. Two moved to blood cross match. That is not a process that can move faster than it does. It’s a test and a lesson in patience.
Gage was able to get a kidney transplant on March 27, 2007. The donor, Jody – a friend we met a church – donated her kidney and the “gift of life.” I know it’s cliche, but really, there isn’t any other way to put it. She saved his life. We were hopeful for the first time in a long time. We still monitor his kidney function function regularly and the normal childhood illnesses are met with fear of him getting sick enough to be hospitalized because he is immunosuppressed and his body can’t fight infections like typical kids. We love our donor (and the other potential donors that were willing to give him a kidney) and her family. And we love her gently-used kidney too.
Quinnlin had her transplant on September 29, 2009, also her 8th birthday. The donor, Cheryl, also comes from our church (I know! Those Methodists are giving people!). She’s the wife of the associate minister at the time – someone who helped us greatly navigate our relationship with God after the kids’ were diagnosed. We prayed together when Quinnlin was an itty-bitty baby that she would find a kidney donor – we didn’t know it would be his wife.
They are both on a lot of meds. We also go to the hospital a lot for appointments, some routine, some not. It honestly never stops. There is always something, as the saying goes.
Gage had a very traumatic bout of clinical depression that began in the summer and fall of 08 and we’ve been managing a whole new special need. The thing about mental illness is that there isn’t a sure way to deal with it. He was suicidal for a long time and it required us to monitor him with all eyes during waking hours and at least one eye during sleeping hours. An acquaintance said to me, “Yeah, we’re as happy as our saddest child, aren’t we?” My, how true were those words? Gage can’t express what he’s feeling and so we are working on that everyday. We believe his depression is as a result of the medical intervention/trauma he endured at a time when he didn’t have the vocabulary or the thought process to understand it. Plus, let’s face it; he was sick and fighting for his life. He didn’t have time to learn coping skills.
In January 2010 Gage was hospitalized in a psychiatric hospital for kids and teens because he had a mental break. That turned out to be a game changer. He’s on a new batch of meds and as of mid 2012, he’s doing remarkably well. The thing to do if you ever think your child has a mental illness? Find a doctor who isn’t afraid of prescribing meds that can help. We stayed with the wrong doctor too long. The diagnosis isn’t exactly simple and there are different opinions from the 4 people involved in Gage’s mental health. We’re happy to have found a doctor that believes in helping a child live a more functional life with meds – no matter what the diagnosis. Gage is amazingly resilient. He’s the bravest person I know and he’s meant to do great things with his life.
I’ve learned that people are often afraid to discuss mental health issues in public. If you have a child with a mental illness who needs extra support from those around him, don’t expect it abundantly. The stigma is still there. I’ve decided to be public about Gage’s because A) Keeping silent would have meant I thought it was something to be ashamed of and B) I want to own our story. This way means I get to spin what I want out there. Gage knows his story is public and I let him take the lead on what people know.
Since his hospitalization we are so thankful we are seeing glimmers of the old Gage and a lot of the new Gage. He’s growing and changing and living. He even laughs again. He will even look you in the eye and ask questions. That didn’t happen for 2 years and so anyone who wants to say don’t medicate your kids…has not seen the before and after of Gage.
Educationally they are delayed because of OMA and renal failure. Gage is a 7th grader in 2012-2013, after missing a lot of school during the dialysis and transplant year and he’s been behind ever since, so things are generally tough. He’s doing terrific in a private school for kids with differences. Quinnlin is a 5th grader after being mainstreamed into our neighborhood school for 1st grade after 4 years at a special needs school. We’re working to help them educationally and physically stay on track with therapy and special services in our school district (quite possibly the best public school for special needs kids ever!) and the new private school (whoa, the expense). And a few tutoring appointments here and there.
As parents we never thought we’d have to juggle dialysis and doctor’s appointments with piano, swimming lessons, scouts and regular life things like home work and laundry and wait…work too, but we did and we are and we do okay as parents and as a couple.
We’re lucky and blessed to have a strong support system of our families and friends…the people I call The Village. At times throughout this drama they are the people who show up and have enough faith when we don’t and we’re extremely grateful for them. It also helps that we have an incredible medical care team for the kids at Children’s Healthcare of Atlanta, Egleston Campus.
We’ve learned a lot about ourselves in this process – most of it good. And well, we’ve learned that it doesn’t hurt to have a sense of humor either.
My kids inspired me to begin a social networking site for parents of kids with special needs. Support for Special Needs. I also write for a humor site (gotta laugh, right?) Aiming Low and several other special needs online and printed publications.
I also serve on the Advisory Council for Children’s Healthcare of Atlanta, on the Board of Trustees of the PKD Foundation and volunteer my time to support parents whose children or fetuses are newly diagnosed with ARPKD, ADPKD and other cystic diseases. It’s one of the most challenging and rewarding things I do.
Visit my professional site The Other Julia Roberts
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