Hey everyone - I know it’s been ages since I’ve done an update on my kiddo and my family situation; I’ve been crazy busy for what feels like forever, and a lot of the times I just don’t have the energy to post anything “deep” - a few one offs in entertainment related threads are easy enough, but actually writing anything with depth has been fairly difficult. Still, I’ve had so much support from my friends here, and I want to give you all the best update I can manage.
We’ll start with Riley - he is, thankfully, doing really well with his continued treatments for his leukemia. We have another two months of intensive chemo to go through, but then he will reach the maintenance phase, and will be able to live a fairly normal life (with daily medication for the next three years). His hair has started to come back, and it is soft and silky, almost like a baby’s hair. He is happy, energetic, and full of joy - and for the first time since this whole thing began, we were able to have him for a whole day at my house (rather then visiting him at my ex’s). It may sound petty to some, but there is a HUGE difference to being able to visit with him in our own home than having to be visitors at my ex’s house. It was a great day - we played a lot, told stories, played with Play-Doh, had hot chocolate and watched Mickey’s Christmas Carol together, then back to lots of playing. He really, REALLY missed his “little” brother (he’s only 3 months older than his step-brother), and they played so well together! Riley is one of the few people that my stepson (high functioning autistic) really opens up to and can actually play with without withdrawing into a corner to play alone. In two more months, we will be able to start having Riley overnight again, and I can’t wait for it!
In other good news, this is my last week at my current job. I was offered a position with another defense contractor the day before Thanksgiving, and since the contract I am on is up and not looking like it’s going to be continued, I accepted. The great news is that the new job, while not paying a lot more than my current one (50 cents an hour), has a LOT more earning potential. I’m going from the top rung of earning in one position to the bottom rung of another. It’s a definite blessing. I’ll also get to do some travelling with the new position, something I’ve always wanted to be able to do. On the downside, the insurance coverage for the new position isn’t as good as the insurance I have now, which may cause some complications with Riley’s expenses…but I just found out this morning that my current job is changing to a less desirable plan at the first of the year, so I wouldn’t have been able to keep it as is anyway.
We’ve also had to make a lot of sacrifices this past six months that we’re turning in to blessings of their own. As some of you may remember from my pit thread, we had to get rid of all our pets when we were forced to move from our old home into a much smaller place - we had to both for rent agreement reasons and because having pets around a neutropenic child is considered a very bad idea. I am very pleased to say that we were able to rehome all the animals, and they all are doing great. In one particular case, it’s worked out even better than I could have hoped - my mother took in our English Springer Spaniel, who has calmed down dramatically from when she was a puppy and is now a wonderful, obedient, loving dog. Even better, my mother, who is still grieving the loss of my father, has taken new joy in the companionship that our dog gives her, and has become a lot more active now that she has a new “baby” to take care of.
Speaking of the move, that too, has been a blessing in disguise. The new house is SO much smaller than the old one - about 1000 sq ft less - and so we had to get rid of a lot of stuff. Thankfully, my wife’s cousin (who was staying with us) had to get her own place, and had nothing…we were able to rehome a lot of our furniture with her to help her get set up. We also had a very dear friend who also needed some fresh start help that ended with a lot of our stuff. And yes, we gave it away - they are both broke - and sure, we could have sold some of it…but it feels good to help people when so many have helped us. And the new house, though smaller, is SO much easier to keep up after. We cleaned the whole house, top to bottom this weekend to prep for having Riley over, and it took us under 3 hrs to get the whole place thoroughly cleaned! It’s nice to not have to worry about an overwhelming amount of housework at the end of a long and stressful day.
All that said, I still appreciate your thoughts, prayers, and well wishes. It is looking more and more like we will have to medicate our autistic child…he has been in three different special ed programs now, and has made only a fraction of the progress he should be making, and while the schools can’t outright say “your child needs to be medicated”, they have highly suggested it. We’ve avoided it thus far because we wanted to exhaust all other options first…and to be honest, he’s such a sweet boy and so full of joy, and we fear what meds may do to his personality…but it’s looking like that is going to be our best option.
Also, the trial against my ex’s child-molesting ex will begin either today or in January (they have subpeonaed my wife and step-daughter for today but said it may not actually start today) - plus, we have a contempt of court case against the jerk next week for child-support issues (at this point, over $12,000 in arrears) and another custody hearing next month (he is the father of our autistic son) to retain full custody until the molestation trial is completed. The stress of the whole situation is incredible, but we’re slogging through it as best we can.
My wife’s health has become a concern - her blood pressure is through the roof, bad enough that her doctor had her get a blood pressure machine for home use and she has to monitor it twice a day, plus anytime she starts to get upset. They feel her stroke risk is very high. And because we don’t have enough to deal with, they can’t put her on meds at the moment because they found a suspicious lump in her left breast…but they don’t want to biopsy/test it until I can change insurances at the first of the year, so that it won’t be considered a preexisting condition. Likewise, they think her thyroid is hosed, but can’t do anything till after the first of the year. But when they can do something about either, blood pressure meds can severely complicate what they will be able to do.
Lastly, I am still in a world of hurt - I think my rotator cuff on my right shoulder may be damaged. I still can’t lift a lot of weight or swing a stick or anything like that without risking a LOT of pain. Unfortunately, there’s not a lot I can do about it right now, save for taking Ibuprofin when it flares up, and not doing the things I love (like sword fighting) until I eventually get the time off to have it fixed…as it will most likely require surgery, and that could take me a year at the new job to earn enough time for.
So there it is all - sorry for the new thread, but the old one was getting long, and I wanted to update on more than just Riley’s leukemia.
Thanks for being here…I appreciate it more than I can say.
