Please God, let me find peace

It’s now 4am and sleep remains elusive.  I’ve been laying here for over two hours now and I just can’t fall asleep.  At least Lizze finally fell asleep. 

This is actually the first night I could have actually slept through the night because the boys have slept through the night. 

I’ve got so much going on in my head right now and I just can’t seem to shut it off.  I’m worried about Lizze.  I’m worried about Gavin.  I’m worried about Elliott and Emmett.  I’m worried about Christmas.  Now I’m worried about what I’m going to do with the van situation. 

There’s no end to the things I’m worried about. 

Gavin has me absolutely terrified.  He’s lost so much weight and he so easily destabilized now that we can no longer risk him making the trip to Akron Children’s Hospital for his monthly IVIG Infusions.  We are going to have to start doing this at home, once a week. 

I feel like we’ve hit a dead end, in regards to figuring out what’s behind his major health issues.  We no longer have a direction to go in or any idea what to do next. 

In the last two years, he’s lost his immune system, been diagnosed with epilepsy and developed severe Autonomic Dysfunction. Now he’s losing weight and becoming increasingly more medically fragile.  This weight thing has me pretty freaked out because even though his caloric intake has increased this year, he’s still losing weight. 

It’s like all we can do is watch him waste away.

My other half, Lizze, has never been this bad.  Her health is continuing to get worse and we keep running into insurance problems, when it comes to finding her more help.

I’m being pulled in so many different directions, I literally don’t know what to do. 

I’m going to try one last time to close my eyes and give myself a chance to rest before the insanity begins. 
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Meri Beller Kelly

One time I went to a therapist. Father hearing about my life, she said, “Wow, you are constantly having to put out fires”. It was a good way to word it, then I knew she understood. That is what you re having to do, my friend, constantly having to “put out fires”. I hope things will soon get better for you & your family. You all certainly deserve a break!

rjones22

Rob, I pray for peace for your family that seems elusive. I know you worry about Gavins weight issue especially because he has all these other scary heath issues. The only thing i can say is hang in there on the weight. I am still scared to death for my son. he was 104 at 11 years old (not overweight really and he was on meds that seemed to have that side effect). It was like he was fixing to go thru a growing spurt and cancers stopped that for a while. now he is 21 and 114 on a good day. i got so awfully worried to death so bad that about a couple of months ago we set up a spreadsheet so we/me knew how many calories he was getting. He was getting over 3000 calories a day and didnt gain a pound and the most exercise was going to the bathroom 2 times and the kitchen once. he swears up and down that him moving around in the bed moving his laptop etc is using energy whatever. how could at 11 yr old he couldgo thru a bone marrow transplant and weigh the same 28 days later? he had major heavy duty all at once chemo and DID NOT EAT for 28 days. only a few days of tpn and he had an iv for hydration as he couldnt drink. he couldnt drink or eat. he thru up a bunch, had the worse diareahh ever, all this from the chemo and he still weighed 104. now 10 years later he has grown (which was another miracle) taller from 5’2 to 5’7. I cant get anyone to be concerned enough to help me. It would help to know what makes that happen. I drive him crazy. he is skin and bones. i dont like to see him without a shirt or just underwear, but if you put clothes on him and shoes and jacket and he looks normal. he has beautiful hair and skin. Pale. Pale. When he has color it means he is sick. he looks perfectly well with color and it makes me sad. The whole point is I feel your pain. I really do. Lizzie reminds me of my son as they are sick and in so much pain, andit seems we can’t help anymore than we do. NO INSURANCE FOR THE FIRST TIME EVER for the last 3 months. there is nothing they say they can do anyway. meds expensive. Don’t take this the wrong way because I wish I was right there doing whatever I could to help you all and just be with Lizzie, please tell hi with much love and empathy, but I want you to think when you are trying to be positive and actually doing a great job, that Lizzie is sick and she is also an adult. You have to keep in mind that she is not one of the kids, i couldn’t even imagine the hell she is going thru which Mr. Fixer Man Rob can’t fix. When you have your list of worries (we all make them) When you are prioritizing, keep in mind that even though Lizzie has and is having a rough time it is not as bad as the kids because she is an adult. I am not saying not to care that is stupid. I am saying that even though she is sick, I really really feel she is you partner and the best she can do right now in this partnership is get in the bed and/or whatever she does (whatever she does is fine since she cant get medical help) let her have the dignity of being there for you by being further down on the list. if that makes any sense. i am in the same place that you are in that we know what the sickness is but we and the drs don’t know what to do to treat it and it is horrendous to watch (much worse for them). So Lizzie and Gavin are a little at the end of the list at this point because you have done all you could for Gavin, he is not about to die of starvation as he is eating, that autoomic thing he has, you can’t do anything about that either and i had the situation that you don’t know if your child is gonna die and it last a long itme. I havent even read the post about the van yet and I know that is a nightmare. it isnt like misery loves company, but I just want to remind you (I know you know) that a lot of families are having a rough, terrible,I don’t know what to do, Christmas. I know this is horrible but the connecticut kids shooting happended about now last year and those parents DONT HAVE THEIR CHILDREN AND COULDNT HELP. As hard as it is at least we have everybody. About Christmas, those same other families in coneticut I was talking about had OTHER LIVECHILDREN that they have to tend to about Christmas too. i am telling we have had a Dollar Tree Christmas and and Happy Jesus Cake and had a ball. Be as easy on yourself as possible. You have a lot on your shoulders (I hope you went to the dr about you which is crazy cause you havent had one minute. I hate that for you, I really do. Please tell Lizzie thanks for hanging in there and yall already know you will  live thru this terrible terrible time. Isn’t it awful their are so many families going thru all this terrible stuff just like us but different but the same emotionally. Just get to sleep, try to the the dr to recheck your meds. I dont know.

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