Hi Jewels and welcome!
I've been trying to remember back to the early days when life was one long appointment with... someone, LOL. I guess the good news is I don't remember a lot of it?
My oldest was a preemie, a surviving twin, and has severe cerebral palsy (his functional motor skills are about on the level of a newborn) as a result of oxygen deprivation due to underdeveloped lungs at birth.
I remember trying to go to some Mommy 'N Me kind of things early on but it pretty rapidly became clear that Boo just wasn't developing anywhere close to normally. I don't think I'm a terribly social person to start with, but I do think that as my focus switched to nutrition and Occupational Therapist (OT)/PT/ST, equipment needs, etc., I became even more isolated. My friends with neurotypical kids just didn't understand where I was coming from and quite frankly, I was too emotionally exhausted to explain. I did gradually develop a new circle of friends who had children with various disabilities and that was probably one of the greatest supports - it's nice to be able to discuss our concerns and fears with folks who are at least in the same marina, if not in the exact same boat.
When thank you came along, I was completely awed by his development. I probably missed some early warning signs that there were significant behavioral problems with him because I'd never really seen first-hand "normal" development. Fortunately, when he was 5 and things really were getting out of hand with him, Boo was pretty stable. It's been a balancing act ever since. I do think my 2 youngers kids have had it pretty rough - they've had to endure countless doctor appts for one or the other older brother, and I can't tell you how many days have been spent in ERs for either Boo's seizures or thank you's meltdowns. on the other hand, I think the younger 2 are much more compassionate and have a positive take on disabilties. I also very much hope that husband and I have set a good example for them in dealing with life's challenges - nothing is guaranteed and you just kind of have to deal with what you get, you know?
But I have the luxury of having been at this for almost 20 years now.
Certainly, 10-15 years ago, there were days I wasn't sure I was going to get thru the day with sanity intact. It's a whole lot to handle.
I'm sorry to hear you're separated. I know husband and I certainly went thru a rough first 10 years - the death of our daughter and Boo's very sickly state at first. Then, as I'm sure you can relate, the never ending appointments and decisions and choices relating to Boo's care that husband was never around for because of his job. He's a "fixer" - and if he can't fix things, he just accepts them. It was a major problem because I'm a control freak and I can't control things, I have to vent and rant. It made for some really *really* tough times. I took his acceptance of how things were as him not caring. I was very focused on what was going to happen in the future and he is more of a day by day kind of guy. Ugh! Honestly, I don't know how we made it thru - I attribute it to sheer dumb luck.
When thank you's behaviors really went south, my husband also was in denial. He thought.... well, to be honest, I don't know what the heck he was thinking, LOL. We talked divorce. I finally put my foot down and had thank you admitted after some very unsafe behavior at age 6 - husband was *livid* with me, absolutely furious. But... he wasn't home, he wasn't dealing with this out of control kid 24/7, and it just wasn't enough anymore that he showed up at night to pick up the pieces. There was something very seriously wrong and the counseling that we had done up to that point with thank you just wasn't cutting it.
I think it's excellent you're in counseling. Hindsight being 20/20, it's something I should have done when Boo was an infant, and it's something I should have stuck with thru the years. It's so important to take care of yourself, emotionally and physically. I didn't get that until I was really falling apart. I think it's also really important to reach out to parents in similar situations. When you have a kiddo with medical issues and another with behavioral issues, I've found you kind of end up with 2 separate circles of friends/acquaintances. But having contact with folks who are traveling similar roads really is important - you learn, you teach, and you can share the fears that, in my experience at least, parents of pcs just cannot relate to. It's very validating to be able to say "I'm worried about... " or "I don't know if I can do it" and have people understand and support you.
I am most definitely not the poster child for great mothering and appropriate coping skills.
It's been an evolution over the years - trial by fire. I'm certainly far better at juggling the various needs of my kids than I was 15 years ago. I still don't take great care of myself but I do enough to keep on going, LOL - more than I did in the beginning.
Anyway - welcome! Glad you found us!
