A Week Without

It’s Thursday and for the last three days Zoe has been up at Camp Korey, a place I am convinced is just about the greatest and most gracious gift our family has been blessed with. I was nervous to take her for such a long overnight camp. I wondered if she would drink enough water (yes this is a big deal). I wondered if the blistered patch of sunburn on her cheek would get worse. I wondered how she would cope with stomach issues and if her Wednesday only medication would be administered everyday or not at all. Thank goodness for my dear friend Janis who texted me the night before to let me know that I’m not alone in being anxious this first year. To be more precise she said that when she dropped off her son the first year her first thought was, “What have I done?”

It took exactly five minutes for me to shed my worry when we arrived. One of the first things a counselor said to her was, “Nice water bottle. We have a new one for you that you will carry around this week. We’re going to be drinking a lot of water this week.” Then when I met her cabin counselor and pointed out her blistered spot she explained that they apply sunscreen every 2-3 hours and everytime they’ve been in the water. DONE. In that moment I realized that they were going to take better care of her than I do. What parent actually reapplies sunscreen every 2-3 hours?

For once all of Zoe’s special and extra needs were everyone’s. Every kid there is on an immunosuppressant. The camp is tailored for them so every reservation I had was already accounted for. I can’t wait to see how it feels for her to be with her peer group; a week without feeling different. Realizing every kid there knows what it is like to stay days and days in the hospital, to know there is always another surgery to come, to be tied to medications and doctor’s appointments when all your friends are at the park.

It was a breath of fresh air for me to stand in rooms of parents who live the same type of life I do and not feel “other”. Every parent there was both a little nervous and also extremely grateful to leave and have a week without. A week without medications, without doctor’s appointments, without hand gel, without stethoscopes, without being part mom/dad and part nurse. A week without the transplant life. A sabbath.

Where to go from here

What a new phase. I remember sitting in that dark echo room while the Bad News Doctor gently listed off many of the things we should expect. Nutrition issues, learning disabilities, gastrointestinal issues. I brushed them off like dirt on my sleeve. They were not “the now”. They were in that nebulous future where she might not even exist, and I had only two arms to hold all the worries and sorrows and they were both full. There would be time for that later. If there was a later.

Later is here. It has been here for awhile now but it’s easier to post dry facts about blood draws and hospitalizations and medications. It’s easier to talk about specialists and fevers and speech therapy. And she is six. SIX! I tear up inside whenever I hear myself say that. She is her own person and intensely protective of her story and her health. Someday she will find out I kept this blog and likely be mortified and hate me all at once. I feel that as I think of writing now. I feel that weight of her privacy and I can’t quite figure out how to reconcile that with my need to keep this blog, and my desire to write about the issues I brushed off at the beginning because they were too far away. ADHD, anxiety, and PTSD, these issues that are so intensely personal to her that she lives with because she fought.

Putting on my big girl pants

A funny thing happens outside the incubator world of transplant medicine when you don’t schedule a follow up appointment……nothing. Nothing happens. There’s no calls to explain why you should reconsider, no veiled threats about bringing your child in for the care that they need, no postcards in the mail. If you want to pretend your child doesn’t need to see that clinic then you are given free reign.

It has been very difficult for me to come to terms with the fact that Zoe is going to have longterm GI problems. No one has explicitly said she will but if I were to list the problems she’s had thus far it would seem pretty obvious that GI issues are not a passing fad for her. And yet I have refused to establish a meaningful relationship with her doctor or his amazing nurse. For a couple years that worked because transplant would treat her, get the GI doc’s input and keep her in their clinic but those days are long gone. I have viewed GI clinic as an optional appointment if she doesn’t seem overwhelmed with other appointments. I have mentally stomped my feet and REFUSED to unpack in that house. In essence, I have slacked off until we DESPERATELY needed their input. There have been consequences to that mainly that we have had to admit Zoe into the hospital in order to get a GI specialist to look at her NOW. If you see a doc enough in clinic, guess what? They will actually see you for an emergency in clinic!! Crazy how that works.

So in my little world of self-denial I gave Zoe a “break” this summer from GI clinic and then couldn’t get in until December (which they AGAIN reminded me that if I just call the nurse they will get her in sooner). This was not such a good idea. I generally think of myself as having this medical lifestyle pretty well figured out. When it comes to her transplant stuff, her speech stuff, her skin stuff and normal-run-of-the-mill kid stuff I have a groove, I have insight and I can monitor and rock it most of the time. It’s like I have a split personality when it comes to her GI stuff. I left her on a medication that her doc specifically said needed to be short-term, for a year and a half. A YEAR AND A HALF! I went into her appointment thinking I had things going fairly well and that this was just our new norm. I can’t imagine what this guy writes in his notes about me. It was unnerving how wrongly I had interpreted the situation. I still can’t get over how long I left her on that medication. It just didn’t seem that long in my head. Plus I had been weaning it (on my schedule, without consulting the doctor, of course). Totally absurd but when you weigh poop issues against heart issues it can sometimes be hard to take it all too seriously. Until now. My new year’s resolution, if you want to call it that, is to put on my big girl pants and get cozy with the GI clinic. They will get my relentless phone calls, I will schedule follow up appointments, they will become vested in her care, I will learn the medical assistant’s names and they will receive Christmas gifts next year.

It breaks my heart.  These conversations.  I’ve known for years that they are coming.  When she was four we had one in the car.  “Mommy, will this be my last surgery?”.  “Mommy, will I always have to take medicine?”.  It feels like a horrible secret we have to slowly tell her.  Today I had to gently redefine her vision of “well”.

Zoe adores her older brother and most things in life are measured by what her brother says or thinks.  Zoe’s vision of healthy, or “well” is also based on her brother.  The boy who never gets sick.  The one who sees the pediatrician maybe twice a year.  The one who never has to see doctors at Childrens.  She wants to be “well” like him.  She wants to know when it’s his turn to be the sick one.  In my attempts to explain that maybe, just maybe she didn’t want Noah to be sick, maybe she just wanted to be well she sobbed, “But what if I’m never well?!”

Her well is never going to look like Noah’s well.  And so I had to explain that even if she feels fine and everything in her body is working well, she will always have to see doctor’s at Children’s, have her echos and do her blood draws.  I wanted to say, “Someday you’ll be well enough to not go back”.  I wanted to lie so badly but I just couldn’t.  Her version of well just means fewer doctor’s appointments, fewer blood draws and fewer medications.  She’s starting to piece this together in her little brain.  In her words, “This is so unfair”.  It is.  It’s horrible.  It’s not what I wanted for her.  She sat on my lap and cried and cried.  I held her and rocked her and told her it was horrible.  I wanted to be all rosy and sunny and pretend it wasn’t a big deal but really it is.  I told her that the amazing thing that Jesus can do for her is to help give her joy in the horrible.  Today she was not ready to hear that.  I know another day she will be (this is, afterall, the girl who sometimes asks me when she GETS to stay overnight in the hospital again).  Today was just all about grieving the horrible.

Tightrope

I’ve been thinking a lot about Mia the last few weeks.  The “what-if’s” are staggering and the regret Mimi is living with is incomprehensible.  Nearly every hospitalization there has been some event for Zoe that I have felt I could have prevented if only I had ____________ (fill in the blank).   Pain and fear she experienced because I didn’t know better or didn’t speak up. You learn how to forgive yourself (and forget) the small regrets; the bigger ones take a very long time.

Parenting a transplant kid is to walk a tightrope 24 hours a day.  It feels there is no room for mistakes, big or small because sometimes those small ones roll along gathering strength until they become the titlewave you never wanted to drown in.

You look at her and see energy and smiles and mostly health.  It’s a mirace to be born with two heart chambers and look this good.  Oh this fragile facade that can crumble so fast.  You blink and suddenly you’re in a downward spiral.  Try so hard to stay balanced on that tightrope.  Learn how to see the rope through your tears.

We received a letter this summer from her program reminding us to take her care very seriously because the consequences are deadly.  Not just the big stuff.  Not just the medications but all  of it.  Those blood draws really do need to be on time.   Those echos which have looked so good for so long; they matter too.  On time.  No mistakes.

You can’t casually walk a tightrope or you’ll fall.  You can’t close your eyes until you can balance in your sleep.  You don’t mentally go on vacation or check out.  The work load can swing from manageable to superhuman but it’s still a tightrope.  You get more talented over time and it can seem nearly effortless but one mistake changes the picture.  You don’t stop balancing.  Ever.  No mistakes.  Which is of course impossible.

Camp Korey

This is truly a magical place.  Located on the grounds of the original Carnation Dairy in Carnation, WA it is breathtaking in it’s view and it’s mission.  Camp Korey provides a safe camp experience for kids with life threatening illnesses.  They have doctors and nurses who volunteer their time so that kids can go to camp.  The summer is broken into thematic weeks by diagnosis so kids spend the week with medical professionals familiar with their needs and kids who are experiencing the same thing.  They have an arts and crafts building, an amazing ropes course, a swimming pool, gorgeous gardens, an indoor gym complete with climbing wall, basketball court and ping pong.  There is a dress up area that is at least 3 times larger than what you are picturing complete with costumes, wigs, jewelry, masks, hats, you name it, they got it.  The food is delicious and they have their own enormous garden that contributes to each meal.

This month we went up for solid organ transplant Family Weekend.  We stayed in beautiful accomodations and had a “family buddy” who showed us around, took the kids for activities and basically blessed the socks off us.  Zoe said, “I feel like a queen here” and Noah’s comment was, “Now I know what it’s like to have a butler”.

We spent the weekend looking at the incredible view, meeting new families and spending time with families we know from Children’s already.  There were designated times for parents to be away from the kids to share together, ask questions and just support one another.

The last few months feel like amazing opportunities have been everywhere.

Fantasy Summer

It’s been requested that I give an update (and rightly so).  The last year has been filled with the usual business of life with a few added pieces.  The last I had posted I thought we had a handle on Zoe’s nausea but it didn’t end up being the case.  She struggled with it for many months before finding a medication to calm it to an exceptable level. She started the mediciation in May and by July it was making progress in her body.  Her GI issues persisted as well.  It was hard on her.  There were a lot of things tried including diet restrictions that just weren’t fun.  It was hard on all of us; I’ll never get used to doctors scanning her body to see if she has cancer.

Included in all this was my mom suffering a stroke (in November) and Paul rupturing his achilles tendon (in February).  All this combined to make this summer all the sweeter. We had an AMAZING summer.  Our best summer.  No hospital stays, no little girl lying on the couch sick and REAL vacation!

We started the summer with my annual camping trip with my oldest friend, Sarah and our moms.  Oh, and we bring the kids too.  The trip is always memorable which is a euphamistic way of saying weird things happen on this camping trip every year.  We had the year of fire (don’t ask), the year of wind and this year was the year of water and lightning.  The weather was picture perfect during the day and 103 degrees!  Each night it poured rain on us (night #1 actually ON us) after an amazing thunder and lightening show.

Other highlights included having friends here from out of town

a little girl turning 6

CubScout bridging ceremony and camp

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

and going to NEW YORK CITY!!!!  It was amazing.  We were able to stay with my friend Sarah who also doubled as our personal tour guide.  It was a whirlwind of activity and fun without any bumps in the road.  So nice to have no bumps in the road.