Minion Monday – The joy in his eyes

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Lately, my health has been bad, scary even. Until this past week, I have been able to hold things pretty well together. My awesome kids taking care of Zach and somehow managing to not killing each other. Then my husband’s work giving him a ton of time to be with me, help with the doctors and the kids. For that, I am forever grateful. My biggest worry has always been Zach. I posted this week’s comic because his is one of the conversations I wish Zach could have. He doesn’t because he lacks the words. I have been his constant, every therapy, each tuck in with few exceptions. So having me, mom, being gone for weeks at a time had to be hard and because of our communication problems I have no idea how much he knows or hears. Yesterday he came to visit me and celebrate his 14th birthday, I noticed some advances and some loss. I am hoping regression isn’t in the cards this time but if it is I will still be here to fight it and for today that is enough.

 

We tried and tried to maintain his schedule with things like having his dad working from home until Zach is up and started for the day. Then the older kids take over so dad can come to the hospital to be with me, followed by nightly Skype calls at bedtime in an attempt to keep him in his routine. Then last week things changed. I took a dramatic downturn and nearly lost my life, I was unconscious, tubed and in no way could I make that nightly call. It was all I could do to heal and fight for my life. So the long fight to keep his routine as normal as possible was lost. One of the best and worst memories I have from all of this was when I was able to talk enough to make that Skype call again. The absolute joy in his voice and in his eyes when he heard me say “Hi Zach” is something I will ever forget. I was as if he thought I had died and come back to him.

So the long fight to keep his routine as normal as possible was lost. However, one of the best and worst memories I have from all of this was when I was able to talk enough to make that Skype call again. The absolute joy in his voice and in his eyes when he heard me say “Hi Zach” is something I will ever forget. I was as if he thought I had died and come back to him. I guess in a sense I did. I still burst into tears just thinking about it.

I will write more about my health as I get stronger. For today I have this. Between my kid’s joy and my friend Eric, who walked me outside today, to a koi pond where it felt so good to have the wind and sun on my skin again. Today it is enough to be alive.

This Weeks Comic-

Lately my health has been scary bad. This is one of the conversations I wish Zach could have, beca mom being gone for weeks at a time had to be hard and scary.

Lately, my health has been bad. This is one of the conversations I wish Zach could have, he doesn’t because he lacks the words. I have been his constant, every therapy, each tuck in with few exceptions. So having me, mom being gone for weeks at a time had to be hard and scary we tried to maintain his schedule as much as we can but last week I wasn’t even conscious so that made things even harder. Yesterday when he was here he seemed to have lost a couple of words.

Zach probably would also want to know if this meant I would stop making him Mac n Cheese because it is too much like Sponge Bob… you know, absorbent and yellow and porous with cheese.

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