Redirection

Redirection: Don't think I don't know when they do it. If I'm upset about something, it's not uncommon for Mom or Dad to change the topic, dangle a toy, or try to bribe me with something so that I'll stop fussing about whatever is bothering me.

Well, it works sometimes and sometimes it doesn't.

The last two weeks have been a bit tricky. I was supposed to have a spinal tap last week, but I was too sick. Then this week, I was supposed to have a spinal tap on Thursday, my normal hospital day, but my nurse called Mom to say my immune system was really in the dog house and I needed an immunoglobulin transfusion STAT and had to come in a day early.

So, Wednesday we went in for transfusion- long day. Then today we went into the hospital for spinal tap, breathing treatment and my flu shot- long day.

I did great both days. Mom had me redirect my focus and had me dress up in my Halloween costumes and bring smiles to all the people in the hospital: other sick kids in the hallways, nurses, doctors, parents, construction workers... You name it. Me, my smile and my costume really helped me take my mind off of the hard work ahead. It was good for Mommy too.

A friend shared this with Mom today and it's a bit of good advice about redirection.

When you're feeling stressed, stop and take a deep breath. Next, think about all the reasons you have to be thankful. Thankfulness can help chase away stress every time. -Dave Willis



Wow! That hit the spot!
We are thankful we are almost done. Thankful I didn't have too many bad side effects from the chemo. I'm sad a little about losing my hair again this week, Mom and my doctor noticed that I'm shedding again, but I'm thankful that it has grown back before. We are thankful to have met some really strong people fighting this disease who have modeled grace under fire. We are thankful for friends and family who have prayed.

Here are pictures from my two day hospital week. Enjoy. And join me in focusing (refocusing) on the good!

P.S. It's all good. Even in suffering there is learning, and growing closer to God.


























































- My friend Avery's Psalm was open when Mom went to pray in the hospital chapel while I was in surgery. Thanks A for watching out for me. Miss you.

Isolation

It's no fun to feel isolated. All by yourself. Alone. Like nobody is with you, or gets you or gets what you're going through.

It's easy to feel isolated when you're sick. In fact, Mom and Dad have put the lockdown on me for nearly 800 days. Sure I get to go to church in the summertime, but that's only once a week. And Mom does take me to the Zoo, for a speed lap, careful to not push my stroller near any other Zoo guest, but that's only once a month.

Sometimes people are sick and don't look sick, or have been sick so long that their friends forget what daily battle they face, that can be isolating too.

Yesterday I was supposed to have my last spinal tap and we were going to head into these last 30 days, head held high, slapping the hind quarters of my riding horse... Well, it's more like holding on with all fours as I try not to slip off the soft smooth slippery shell of a turtle. I guess I've got a few more things to learn on this journey. And here's the spoiler alert: slow or fast: we're never really alone.

So, yesterday I was supposed to have my spinal tap, but I caught a cold and my airways are too swollen that anesthesia was out of the picture, add my DS anatomy and the fact that my hemoglobin was under the cutoff for surgery... There was just no way that was happening. Too risky. So, I was sent from clinic to the day hospital side of the MACC Fund and they decided to give me a blood transfusion.

I totally thought I'd get to the end without another one of those. They don't hurt. They make me feel like a human again. I lose my vampire appearance and I can do everything better: fight a cold, breathe, run, sleep, play. So, thank you blood donors. Even though I pray I won't ever need another transfusion, other kids will, other grown ups too. I'm not alone because I have the generous blood of a donor coursing through my veins right now. Thank you.

Once on the Day-Side, they put me in isolation. They wouldn't let me out to watch the big TV's, play with the plastic dinosaurs, or sit at the really huge yellow art table. They didn't want the other kids who are also sick like me to catch my cold. So, Mom and I played in my hospital room all day. Isolated. But not really, first we had each other. Secondly, we had the support of our friends who let mom know they are praying for me and my cold and my journey. Thirdly, we've got God. How silly that they call it isolation, when they should just call it Germ Box, because we're never really alone, never really isolated.

God is there when you feel alone, you may just have to give Him a shout out to really feel Him with you, but He's never got an on-hold message and He'll always pick up. He knows just what you're going through and He promises to go every step of the way with you, if you let Him.

He knows I can't wait to get back out in the community, to go to Mass, to the park, playground, and public places. He knows how other sick people feel, poor people, sad people, angry people, people who are hurting. He doesn't make the hurt, but He gives people the tools to get through each day, they just have to call on Him. It's pretty awesome.

For me, well, He is giving me the strength to get through these last few days, one day at a time. He also told Mom I'd really like to snuggle up with a new Minnie Mouse plush toy. And, wha-la, she showed up with one, just as my transfusion started.

All in all, even though my surgery was postponed a week, I am doing okay. I slept through the night even. I hope you're feeling okay too. Try a little prayer, if you're under the weather and remember you're never alone. You may have to live in a Germ Box, but you're never alone.
No really, if you don't feel good, stay home, keep your germs to yourself and I'll see you on the other side in a few weeks!!

Thanks and God Bless You!!

Photos: it was Halloween Costume Day, so I wore my Minnie Mouse dress. Enjoy.


































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