Yeah, this!
But truth be told, it doesn't!
It's always there, it's always waiting, and well, that sucks!
Things have been a bit more difficult than usual around here!
Not exactly sure why, except just can't get our life into any rhythm!
Really ever since school year started, we've just been barely treading our heads above water!
We have a few good days, okay, a few even great days
but it's never sustained!
We've had some incredible moment, incredible progress, incredible experiences
but within a blink of an eye it seems
it's gone
For some reason, right now, we have some incredible good things happen, Ty makes incredible strides
but moments later, things can just slide so far down hill, it just makes me cry!
Like yesterday, morning actually was going fairly well!
After all, it was a Monday!
And pretty much Monday's just suck!
But the day was going pretty smooth for the most part, but as quick as that
he's upset, frustrated and does something he's NEVER done before-
he punched out a small window glass panel in our front door!
WHAT THE HELL!!!!
It did surprise him, he literally said, "Oh, I didn't know it was that fragile!"
But this is my point, I truly believe deep down he is such a good boy, never meaning to cause harm, but he doesn't understand, he doesn't get that even when you are just "not really trying to hurt someone" you are just trying to "get your frustration out" whatever
that things like this happen!
Oops, I didn't mean to throw the stick and hit her!
But when you are swinging a stick at someone, especially when angry, this happens... whether you mean to hit her or not, that's why you don't swing sticks at people, that's why you don't tap on the glass window and then tap harder trying to get my attention, and then keep tapping to the point that know you are punching, and then guess what... it breaks!
Thank goodness he wasn't cut.. my goodness, that could have been really bad!
So, I feel like a lot of my time and days right now are filled with "picking up the pieces" of his very poorly thought out reactions to most everything... and it's more than exhausting!
And it's moments like these, that make me really worried for him, and for us!
His obsessions with videos have been controlling him, (obsessions of any kind are just not good)
his lack of ability to engage, lack of wanting to engage, it's scary!
It's his obsessions that drive him much of the time, and there is absolutely nothing we can do about it, except do the best we can to manage
and if it's not one obsession, there is one right behind it replacing it
So, I find, when things are tough, especially this tough.... I really don't want to face my true feelings!
It's just too hard!
I had to call Brian home from work early yesterday.... I hate when I have to do that, but I absolutely felt I had no choice, I was out of options, he was out of control, and being way more dangerous than usual and what the hell am I to do! Both girls were locked in their rooms so they would stay safe, but nothing was calming him down and he's just bigger and stronger now that he's older!
Damn all the doctor's and professionals that absolutely dismissed every worry, concern experience we had when he was only 2 and 3.....there was reason to be concerned- we were not just crazy parents!
3 year old don't tip tables and chairs over out of anger..... he was suffering in pain with his bowels and tummy
Damn all the doctor's who just sent us on our way when he wouldn't eat food, why?? because he couldn't swallow without vomiting it back up or choking
Damn all the doctor's and professionals who didn't listen to us and said my infant was having a temper tantrum when all he would do was scream and cry for 4 hours every night and nothing soothed him
(oh because his intestines were full of ulcers and sores - )
Damn all the doctor's and professionals who didn't understand anything to do with my son and so let their ego's get in the way of helping him and dismissed him as a suffering little boy who was so so sick
Damn all the doctor's and professionals that just didn't do anything...
And now 10 years later, people wonder why we're here!
I don't.... I knew not getting him the proper help, proper medical care, the proper interventions early on when have devastating effects..... his pain experiences were so real, I knew it... and although we did our best to advocate for him, nothing happens very fast, especially when you are fighting the medical system..... once we got done fighting the medical establishment to get him proper care, then we were on to the schools... and guess what- they were even harder and damaging
and once again we advocated, we fought, we did everything in our power to get him what he needs no matter what that looked like, no matter what lengths we had to go to...
Hell, we fought the medical insurance system, making sure we got to see the right doctor's, the school was not about to stand in our way!
They tried... oh boy they tried... and I do believe they absolutely have contributing greatly to the outcome we are in.. because when you believe people have your childs best interest at heart, how can they not... we had information, we had diagnoses, we had "proof" we were dealing with a very difficult and complicated child... so once again, ego's or whatever...... stops us, threatens us, derails us, drains us from what we need to do to help him!
We had worked with the district since preschool- age 4
never getting anywhere, but deeper into a hole!
And then we are the one's being placed in the spotlight because we have to stop all the games people were playing rather than actually helping our son, but we needed to put our energy back to where it matters most- our son, our family...... and screw everything else.
And truth be told, we do know our son best, we have been by his side since the day he was born, since he was 5 days old and we were telling doctor's how odd his stools were, how much he was crying, how difficult it was for him to eat, how hard it was for him to sleep,
we were there... and we'll always be there...
But I just wish Ty could understand how much we are trying to help him, how much we love him unconditionally, and that we know he's struggling
and we're still trying... and we'll never give up...
even on the most difficult days
But it doesn't mean we don't have our own fears, our own struggles, especially when we do feel very very limited in our resources
very limited in our supports
someone the other day asked if my husband and I ever get out for a date?
I said, it's been years!
and I saw the sadness in their eyes, the inability to comprehend how that can happen!
Don't we have family, don't we have people who can watch our kids, don't we have support
so that we can simply get away even if momentarily!
And we don't... that is the straight up answer...... because when we do "get out" and have to "get people" to help, it's not for enjoyment activities, it's so that we can take him to the hospital for a bowel disimpaction, it's watching him while girls are at school, so that we can get to an appointment, take the girls to an appointment, pick up the girls, take them to an activity, whatever... so so so many other "life" things.... that when you can't have one other person in this entire world watch all 3 kids at once, the juggling act is just too fatiguing, exhausting, and well, when we have tried it... let me tell you how disastrous it went and picking up the pieces after the failed attempt...
makes it so that it's just not worth attempting right now.... it' s just too hard!
does it suck? Hell yeah it sucks... I miss my husband, I miss our happy times together.... don't get me wrong though.... we are really awesome at taking a moment, when we see it... simply enjoying a glass of wine or margarita, we take moments.... that's all we can right now!
And really, people will never ever understand, we don't need people to understand... we learned that a long time ago.... but again, see this is why I've avoided here... this... this feelings... this frustration, ... it's not like it goes away... but I want to focus on anything but the negative..... as hard as it may be!
But that's also why we do our Charity Children's hospital toy drive...
it gives me a better focus, and a focus for our family and especially for the kids... because we NEED to do good things for others..... as hard as our days may be... it's critical!
So, it does feel good to get out the emotions, put them into words on paper, release my mind from their grips....
and once again take on the day, whatever it may bring, to always look for the one or two good moments of the day, not dwell on yesterday's bad moments, not dwell on difficult and challenging moments an hour ago... look to see what positive moment will be in the future moments... try to create a positive moment, a fun moment of engagment... our life is in moments..... it has to be..... otherwise we would miss a whole hell of a lot of good things that keep us motivated and gives us strength!
No matter how hard it can be.... okay, I"m ready to take on today's moments... whatever they may be!!!!
please please please be some good one's ;)
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