When I heard the words, “With kids like these you have to take them home and love them as long as you have them” spoken by our pediatrician in 2001, I couldn’t believe my ears. When I looked at my husband as my eyes were filling with tears in the small exam room he’d already started crying.
Two days earlier as I was packing to go home from the hospital with our new daughter, a doctor called to tell me that my beautiful, big-eyed, much wanted and loved girl named Quinnlin would need a kidney transplant to survive. The doctor also told me to find a nephrologist, “A what?” I said. “A kidney doctor” she told me, which makes me laugh a little today because now we have several that we call our own. Three months later we found out Gage, our then three year old son’s body held a secret all along; he had the disease as well. Autosomal Recessive Polycystic Kidney Disease, a rare form of PKD referred to as ARPKD, known only to 1:20,000 children, two of which were mine.
Looking back I can see how far I’ve come from those first sad months (a time I refer to as “The Fog”) when I was learning how to cope with a new kind of motherhood, couplehood and womanhood. I’d married my beloved never considering that one day we see our (maybe) kids through medical interventions, trauma, research studies, dialysis, kidney transplants, mental health challenges and the always present special education intervention. When I think about those first several months, I’m sad for that mom, even though I’ve moved on in a positive way through advocacy and activism.
I want to look back at that mother who cradled her sick baby while she nursed her, looked down at her face, cried out of sadness and tell her that it will be hard. There will be days of great fear. Days she’ll feel like giving up. I want to tell her that the time between her bouts of crying and sadness will lengthen and she’ll go many days, months even, without crying about her sick kids. I want to tell her that through it all her family and friends will support them and love them and will have enough faith when she doesn’t. I want to tell her that her marriage will remain strong and that her and her beloved will have humor in their life again. That they will laugh. I want to tell her that the people she will meet along the way because of PKD will make her a better person; a stronger person. I want to tell her that no matter what, she’ll never give up and on many days, in fact more than not, she’ll even be happy.
Julia blogs her family's story at Kidneys and Eyes and is co-founder of a social networking site, Support for Special Needs.com. She writes for PKD Progress Magazine, Parenting Children with Special Needs Magazine, She Posts and serves on the Board of the PKD Foundation and the Parent Advisory Council for Children's Healthcare of Atlanta.
So lovely. It would be a wonderful experiment to put all those moms that we "were" into a room together with the moms we've become.ReplyDelete
Welcome, Julia. Wow, do I wish I could go comfort myself back then... I was a mess. What doesn't kill you makes you stronger. Same goes for our kids, right?ReplyDelete
Beautifully written Julia.ReplyDelete
Ellen...mess? You too? it was months before I got my stride back. MONTHS. Hence, "The Fog" I refer too. I wish I could go hug that mom I used to be, too.ReplyDelete
:) Julia, I want to hug that mom.ReplyDelete
Beautifully written Julia. I can relate in so many ways. I am only about a yr into a similar situation as you, but it's amazing how much a year like this will change you. I look back when we first got the diagnosis at how broken I was and how strong I have become. Thanks for sharing and being there for all the other special needs moms - because we're special too :)ReplyDelete
Hi, Julia. It's so good to see you here. Well, maybe not "good", it would be nicer if we didn't actually have a reason to be here. But since we are here, I am so glad to be a part of a community that you are part of too. I hope I just made some sense here, but if I didn't, please chalk it up to my being the very tired alone-on-vacation parent of a pair of SN boys (yawn) one of whom wakes up early and the other of whom goes to bed super late. Beautiful post. Welcome.ReplyDelete
Just to let you know that there is a problem accessing your blog. I have you on my favorites list, but it keeps sending me to some complicated computer geek page.ReplyDelete
JWG -- Yes...I separated another URL I had from pointing to it...so it's possible you had that. Resave it on your favorites by using www.kidneysandeyes.comReplyDelete
Thanks for this post - I relate on a couple of levels:ReplyDelete
I had a similar "fog" actually leading up to my daughter's diagnosis - complicated by 7 weeks of bed rest (6 in the hospital) and the premature birth of my twins, who were then in NICU for 3 weeks...all while our oldest was falling to pieces and we didn't know why and only by begging for answers did anyone give us a hint to look in the direction of autism. Then we had to wait a couple of months for a specialist to get to us on their waiting list (although that was a miracle because where we live the waiting lists are often 6 months to a year). In some ways the diagnosis actually lifted the fog because it gave us a marker of where we were at and pointed us to resources that could help. Not that it got easy then, but at least we could see better.
I also happen to have PKD, not the same type as your children...the kind that doesn't surface until adulthood. My mom has it and I inherited it from her. I have known that I have it for about 10 years now. I have watched my mom go through dialysis and kidney transplant (and she's doing great!) I am asymptomatic and would not even know I had it except that my mom insisted I get an ultrasound to check. I sometimes forget about it, but every once in a while I get the feeling that I have a ticking time bomb waiting to go off...I have to choose hope instead, so I don't get too worried about it.
Anyway - thanks for sharing your story.
Wouldn't it be wonderful if parents of infants/children who have just been diagnosed could read this. I think the isolation of the early days is so destructive. So often dealing with the mix of extreme emotions but not having any one further along in the journey to give you support and perspective.ReplyDelete
I just went to your blog and WOW! I look forward to hearing more about you and your kids!