One week to go!

One week to go! This last week was ridiculous. All this time, doing pretty good most days and now, finally, I can see the finish line, and ….. I started to lose it. I was telling my girlfriends “the mother ship is going down! I’m not going to make it!”

Oh I know it’s not about me! But seriously! These last months I can honestly say I have not cried at all over this place we are headed. I am OK with it. A long time ago, perhaps more than two years ago, we had a meeting with all the medical big Kahoonas over Jesse eventually needing a transplant. We told them that we would be praying all the way through that Jesse would not need a transplant. But we also said (well, TIm did…..I confess that 10 serious-looking medical people around a conference table somewhat intimidated me) that our God is able and he reserves the right to do whatever he wants. But Tim also said that if it comes to the point Jesse does need a transplant, then we will thank God that we live in a country and near a hospital that is expert in doing kidney transplants. So we have hoped and prayed we would not be going here, but we are still hopeful and thankful now that we are.

Still, somehow, being hopeful and thankful has coexisted with impatience, close-to-tearfulness and drama over little things all week. I don’t cry over kidney transplants, but apparently, I cry over new beds that don’t fit the way I wanted, BBQs that need returning and four year olds asking the same question one hundred and sixty-seven times.

We saw Jesse’ kidney doctor on Friday and he was flustered over other things, but it made him curt and blunt with me. “These bloodpressures are a disaster!” he said, flicking the results of a 24-hour blood pressure test we had done. “His heart is now showing signs of over-work and stress from these high pressures. And his bones are weakening and he’ll get Rickets! He really should be on dialysis six times a week.”

At the time I was just trying to not let the shaking in my heart show in my voice or flood the banks of my eyes, so I did not say what was foremost in my mind: “We don’t need to hear this from you! To you, these are numbers. But this is MY BOY!” Instead, I asked him if these things were life and death right now, or if they could hold for one more week. Because that’s all we have to go. One more week.

The doctor was running late, frustrated and probably at a loss to work out how to fix these things that really, they said would be “fixed” with Jess having his kidney removed. But it hurt my aching heart to hear, and he perhaps forgot he was talking to a parent and not a colleague for whom these things are scientifically ephemeral. We are a week away. It feels like 10. We don’t need to hear it’s all a disaster. We need to hold on for another week. Stay the course. Believe all these things will be taken care of with a new and functioning kidney. Actually, to look at Jesse right now, you would never know the one kidney he has left is not functioning. He’s loving soccer (or to be more accurate, he is loving the post-soccer ice-cream); he and Indie jump on the trampoline and play “mums and dads” for hours; they are both up half the night giggling as they explore the joys of bunk beds. He looks wonderful.

If we can get through a week without Jesse’s heart collapsing or my heart breaking, or an infection stopping the whole shebang completely, then the plan is for us all to go down to Sick Kids Hospital in Toronto on Monday 7th. They’ll do another barrage of tests before the transplant itself takes place on Thursday 10th, starting at around 7.30am. Tim will be in one hospital; Jesse will be in another and they will wheel Tim’s ticking kidney underneath the road through a tunnel to Jesse’s waiting body. All going well, Jesse’s surgery will be done in 6-8 hours. My parents will be with me and the girls; Tim’s parents will be with him at University Hospital. From there….who knows. We have a list of possible “complications” … and we are certain, based on past history, that Jesse will create a few new ones of his own. He could be there for anywhere from 10 days to 4 months. Oh pray it is the former! In faith, we have already started buying a special post-operation chocolate collection for Jesse’s dining pleasure.

Indie and Molly will stay in a hotel nearby with my parents for a week, and then they will come back to St Thomas and school. Indie just needs to see her beloved brother is OK, and then she is fine. At 10 months old, Molly will be going cold-turkey into bottle feeding, but my Mum is a brave and determined woman! Tim hopes to return to work in a matter of days.

When we can see the big picture, and when Tim and I can see Jesus on the throne, his eyes brimming with love and attention, we know that in the end, all this will be nothing but an unspeakable privilege. We have this opportunity to witness to how He takes care of those who love Him. Not just with end results, but all along the way.

In the meantime, wonky motherships and donating fathers go between implosion and peace. Sometimes 30 seconds apart. If you could pray we go into this transplant at rest, and with peaceful hearts that are NOT wound tighter than a spring, it would matter a great deal to us.

We look forward to sharing a few miracles and great joy with you soon. With love and all our deepest thanks for praying us through,
Tim, Kim, India, Jesse & Molly

Just an ‘ole virus

Just a quickie to let you know Jess has a virus – not an infection. So they can’t treat it, but that is what has been causing him to feel bad, sending his haemaglobin on a tailspin down and his bloodsugars up. He’ll just have to ride it out. He slept on dialysis today, and needs an extra 15 minutes of it each time now for better toxin clearance, which is not fabulous, but I told the kidney doctor I would do almost anything for him – for 2 more weeks. He was happy to not have to argue with The Mother Bear. To be honest, even though the potential consequences of an infection were grim, when I got home on Monday and spread it our before God, I had a gut feeling as clear as day to “don’t worry about it”. So I didn’t. I love how the Lord does that for us. Even Tim said “I feel like it’s going to be no big deal.”

Despite it, Jess has gone to Lirley’s school as usual, played hard, crashed just as hard afterwards, and tonight, our little “kinney” man has his very first ever soccer game. We fully expect him to pick daisies and maybe kick a ball or 10 in the wrong direction, but he has been wearing Indie’s old soccer shorts all day and has asked me every half hour since noon when soccer is. Not bad for a kid with a “virus”. I love that about him. It has to be pretty big to stop him.

Thank you so much for praying for Jess and for all your lovely thoughts and encouragement. I feel so unworthy of you all. Truly. you are such a blessing to our family.
Kim

Uh-Oh…

I spoke too soon. Today we had dialysis and the longer it went on, the sicker Jesse got. I remembered the process all too well from last January – I would bet my boots on an infection in his line. As soon as dialysis starts, (it takes his blood out through a catheter just down from his neck, cleans it through a filter then puts it back into his body in a continuous loop for 2 hours) it shoots more infected bits of blood all through his body so he just feels horrendous. They took him off 20 minutes early as he was crying so much. We will find out what the cultures show tomorrow.

I know better than to tell you to pray the infection goes or there’s no infection or…whatever. The last time he got an infection in his line, they had to take the catheter out, and miraculously, at just that moment, his kidneys kicked in and he had almost a year and a half with no dialysis. It was a “disaster” the Lord meant for good! So I don’t know what to ask you – pray Tim and I will be at peace. If Jess has ANY kind of infection in his body, they won’t go ahead with the transplant on the 10th. But if they take the line out….well, now he has one kidney with 3% function. They would have to put a temporary line in, wait a few days and then replace the current one. Three surgeries.
You know where to take all this.
Thanks so much.
Kim x

Transplant Date

We got a date. On June 10th, 2010, Jesse John Jose Parker gets a new “kinney” as he calls it. He will be admitted to Toronto’s Sick Kids Hospital (tell me that’s not a marketing mistake of a name for a hospital!) on June 7th. We have started to talk about getting a new kidney a lot. But seriously, who am I kidding? Jesse has no idea what’s going on. He went mad at Tim this weekend for pushing him “in my kinney”. Tim and I looked at each other, eyebrows raised, and said “where’s your kidney Jess?””In my bottom” was the reply.

All he knows is that he has to go to dialysis, and when he gets Daddy’s kinney, no more dialysis. When he gets Daddy’s kinney, he can eat chocolate timbits. And cake. And ice-cream, and milk, and tomato sauce and french fries …. but mostly, chocolate.

He’s often not feeling great, and that makes me furious with my own impotence. His eyes are puffy; he feels sick in his tummy; he has C.Difficile for the 3rd time. He is not his dancing little self.  It’s like I can’t bear it, and my response is annoyance and impatience with everyone. Even the very one my heart is breaking for. We tell him that when he gets Daddy’s kidney, he will feel so much better. No dialysis. No catheter. And he can swim – “underwater!” he always adds. The reality is that when Jesse gets Daddy’s kinney, Mummy might also feel so much better. Not that I need any incentive to eat chocolate. I told the checkout chick at the supermarket that Jesse better get himself a good job as I expect him to keep me in hair colouring for the rest of my life after the mass of grey hairs he has caused me.

It might seem odd, but the week was a hard one. We got a date, and though we have been pushing so hard for this precious timeline for months, both Tim and I felt absolutely thrown off kilter by it. Tim first, me later. Tim was beside himself. It’s so hard for him to feel the weight of the responsibility for providing for his family, yet providing a kidney for his son right in the middle of his busiest season. It was hard for him to find perspective. He tends to swing to the extreme before he comes back to centre. My soul aches to see him off-kilter and not have the words to fix it. I was on my face praying for him, and I just felt God say that this is Tim’s bit of the journey. I may have hustled everyone to this point, but now I have to stand at the gate and wave goodbye to my husband as HE takes Jess this final leg. The picture that came to my mind was of Abraham and Isaac in the Bible story. Sarah finally gets a beloved son, yet  she has to stand there and wave goodbye as her husband loads up her son and they go off to do something seismic without her.

I don’t know why I feel this way. I know God has a plan and he is working some pretty significant things in both of us. It’s really such a privilege for Tim. If he doesn’t feel the largeness of this gift now, I know he will later. A gift for him as much as it is for Jesse. Jess has started to wave Tim off in the morning saying “Dad, don’t be crazy today. Look after my kinney.”

I so look forward to not being hyper-vigilant about how Jesse is feeling. I have also taken myself out of everything I was involved in. I just have not felt free to focus on anything other than my family right now. No church activities, no school involvement, no beloved Book Club even. My brain space feels capped. I look forward to embracing the opportunities to connect with people again in our usual circles. Though I have to say, I feel so much more connected to people emotionally because of this – not less. When someone asks me about Jesse (and living in a small town, lots of people do), I want to hug them (and often do). You can’t hug someone and feel alone at the same time. I just so appreciate the kindness of the asking. But I look forward to lounging and connecting. I don’t think we’ve lounged for a long time.

Enough of a ramble. If you could pray for Tim and for Jesse in this last leg especially, we would all feel the effects of your prayers. Our God can do anything. We have faith, and are yet it’s a daily surrender. We don’t have control – but ironically enough, we never actually ever had any. Life happens to everyone. This was just our turn. And our God is a wise and loving guide, taking us through it in what feels like a healthy, systematic way….though some moments I do wonder what map he is using. It sure aint the scenic route…

Jesse John Parker Blog

Not being entirely internet-savvy, we thought perhaps a blog may be a less invasive and annoying way to keep anyone interested in Jesse stuff up to date. Emails can be annoying – especially ones that tend to be as long as mine. So herewith – you get to choose. You can sign up to be notified of latest postings if you want – or not. But we have so valued your prayers up to this point either way. You have been a taste of heaven for us.