Little Snippets of Life + A Blake Update

I don't want to forget last night.

Last night Blake crawled into bed early with me. We cuddled close, facing each other, talking about life. He then told me that he was OK with whatever surgeries he was going to need. He hadn't been talking about them at all, but now he was. He wanted to make sure that I wouldn't leave him while he was in the hospital for a couple of weeks. He wanted to know if he would get cards and visitors. I assured him he would get both and that I wouldn't leave him. I told him I would probably crawl into his hospital bed and lay with him just like we were and cuddle the night away with him. He threw one of his arms around my neck, squeezed me tight, told me he loved me and that is how we fell asleep.

*  *  *  *  *  *

I am so thankful for a blog reader, Leigh, who also has a little boy with Spina Bifida. She emailed me after reading our post about Blake's upcoming possible surgeries. She wrote me this....

'I was talking to another mom whose son was a senior in high school now. He had the surgeries done when he was 5 or 6 and she said that it was the best decision that she has ever made for him. The hardest, but the best. She said that the recovery was TOUGH, and that she doubted her decision at the time, but after a week or so he was doing much better and she knew that it was the best thing for him. He is totally accident free and completely independent (has been for a long time) when it comes to all of his "potty" issues. He is a tennis and hockey rockstar and is going to college this fall.'

I shared this story with Blake a few days ago. I think this is why he is comfortable with the surgeries now. He knows other boys are like him and he isn't alone. I wish I was so comfortable. I've been following another family who's little boy just had the surgeries 5 or so days ago and I'm scared to death of the recovery. It is a TOUGH recovery. Not anything I would ever wish to experience for our family or for Blake...but we can do hard things and this is just another hard thing that we will do.

We did our journaling last weekend. Boy was that tough. Setting a clock for every 15 minutes about killed us. It felt like a buzzer was going off every time I turned around! Saturday was a bust but Sunday we stayed home and got a really good record. It wasn't the results we were hoping for, but we got a good record. We will start a medication for a few weeks and then do another Sunday of journaling every 15 minutes. Then a 5 day clean out and another Sunday of 15 minute checking and journaling and then hopefully we will know if Blake needs all three surgeries...the ACE, the bladder augmentation and the bladder neck reconstruction with diversion.

We appreciate all of your prayers during these tougher times. We also recognize how fortunate we are with Blake's abilities. All the things he CAN do....even process what more abilities these surgeries will provide him. I'm so grateful for Leigh's email and that Blake could relate to another boy....who is just like him!

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  1. My 7 year old daughter's friend had a similar surgery, if not the same one, this summer. She also has spina bifida. Her parents are wonderful and I know they would chat with you online if you wanted to. Rachel is doing great but it was a long road. We sent lots of cards, gifts and notes via an online board they updated as did MANY people. Good luck to you.

  2. I love that you have some one who can relate and support you through this.

    You guys are in my prayers as you go through all of this.

  3. Bless you. I can't imagine having to make all these decisions. But just know that there are several of us praying for you as you make them. God will be with him every step of the way!

    AND----what a sweet sweet story of you and blake at the top. Melts my heart. I have my Easton, who is 19 months old...I hope one day he'll crawl into bed with me as a big boy and do the same. How sweet!!!!!

  4. I am at a loss as to what to say here, but please know that I will pray for you, Blake and your family. Blake is my hero. Such a brave boy. I wish you all the best. You and your family amaze me.

  5. I wish that I had something really insighful to say..but I don't. Just know that I will be praying and God is the most awesome healer!

  6. Good luck with everything, April. I got a blessing today with a lot of "hope". So, don't loose hope! It will all go well and you and Blake will grow.

    Much happiness for the time to come!

    XO Senja


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