A Journey with Love and Laughter

Read about our family as we journey through life as a family, with siblings, school and spina bifida, and lots of fun and laughter along the way!

Monday, July 21, 2014

7 Days

OMG. What are we doing?
Can I bring this giggling, laughing boy who loves swimming and belly raspberries and give him to a surgeon to put a hole in that belly?! To give him pain and tubes and hospital stays, more doctor appointments, recovery time...
What are we doing?

7 days away.


I haven't told Nick there won't be any more swimming, playing in the lake, going to the cottage for the rest of the summer. No more Cedar Park or swimming lessons. That part of the summer ends July 27th.

Nick's belly. It won't be the same. It will have more scars, more marks. More announcements to anyone who sees his belly that something happened. Something was wrong that was fixed.
What are we going to do.

This is all I am thinking about. Planning, counting down. My whole life feels that it is focused on Nick and his surgery. I think about it, dream about it, talk about it and prepare for it.
7 days.

OK. Now that I have that out of my system.

Long term. That is what we are doing. Planning for his future, independence and quality of life. This is the perfect time to do this. We have worked our way to this point, and didn't make the decision for surgery lightly.

Nick isn't worried. Excitement might be too strong of a word, but he isn't scared or nervous or anxious. He will tell you all about what he is expecting.
We are going to the hospital, to a playroom, then the operating room with bright lights. There will be doctors and nurses and a doctor with a mask blowing air. Mommy will be with me, and Tyrone, and Daddy is coming too. I'll go asleep and when I wake up I'll ask for Mommy and she will come. Jennifer and big Taylor and Zivah will come to visit me, and we will stay over night and then go home. Mommy will stay with me until I feel better.

That is the plan. Even though I know more often than not things don't go according to a nice and neat plan like this. I have talked to him about how he will feel yucky after and his tummy will hurt. But he hasn't asked much more, and I haven't offered. I don't want him to be anxious about pain, that is for me to be anxious about.

I know this is for the best. I know it is the right time, the right place, the right doctor. It doesn't keep me form worrying. From forcing myself not to think of all of the what-ifs.
It is surgery.

Do other parents have these same worries with other surgeries, like tonsils? I had my tonsils out at about this age and I remember anything. I'm sure there was scariness and pain, but I still came out of it ok.
I didn't have these same concerns with the shunt insertion or revision. Or maybe I did, but I definitely didn't have the lead up to it. It was definitely faster, urgent-emergent surgery. Ultimately life-saving.
I had all kinds of worries with the original MMC repair, more of what will our/his life look like after the surgery, than the actual surgery itself. I have heard that things don't always go as planned, that there are bumps in the road. But it's hard to anticipate something that may not happen. And maybe it is more that the other surgeries were life saving and not really a choice. Whereas this is. It is our choice to do this.
But rationalizing my fears and worries won't make them go away.
8 more days and the wait is over and we are on the road to recovery.

And what if half the summer is cut short. Nick has a lifetime of summers and cottages and laughter and giggles.
It will all be here for him next year, and in the meantime we will have a grand adventure, recovering, discovering and learning something new. He will have more independence and once everything is healed it will all be good.
Once it is all healed. Then I will be the one providing encouragement and support to all of those anxious parents who aren't sure if they are doing the right thing. And I will be able to say that it is the best decision that we make, even with x-y-z that we didn't expect...

So with 7 days to go, I am quietly terrified, feel we are as prepared as we can be, and waiting for that 8th day when we can be recovering.

OK I think I'm better now.

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