I haven't been writing much on my blog. Between Facebook and Sam's caringbridge page, I write a bit so I kinda get the bug out of my system but I'd like to be more regular in my writings....
So alot is going on in my life right now, the regular stuff with the family, I'm starting a garden and learning how to be more self sufficient(aka GREEN) and now our church has started the renovations it so badly needs. Everything is good and exciting but it can get a bit overwhelming!
I thought being a stay at home mom would be easy and I guess it would with a regular child but Sam....We have teachers who come every day so my house has to be straighten up. Sam can't be "left to his own devices" at all so I'm always closely supervision and interacting with him. My other boys were very easy in this aspect as they could play for hours on their own. Sam can play on his own some but think about a 1 yr old...that's about where he is so there has to be much more supervision than with a regular 6 yr old. He walks some but outside the home, I have to carry him alot and work with him as he gets easily upset/distracted/bothered. Just going to pick up the other boys from school is an ordeal. First I have to change him out of his zip up pj's . He wears them cause that is the only way I can keep him from having poop parties! Then I have to fight him to get him in shoes, make him walk to the van then put him in cause he can't climb up. As soon as he is in he is fighting to get his shoes off. The ride is fine but he gets upset waiting in the pick up area. If the car is not moving Sam is upset, same way in traffic, at red lights....I'm overwhelmed by the time I get the boys! I'm so thankful for Steve. He gets Sam out at home and usually swings him on his swing which calms him so I can get some things done!
It's hard in a way I could never imagine or really explain properly, it's like living GROUNDHOG DAY over and over...Sam has not progressed in years and probably won't progress beyond this point. Which is fine with us we adore him but it is alot of work! I have no one besides Steve and Jon to help me with Sam. I've looked into respite care but I'm not sure I could leave him with a stranger. Plus I wouldn't trust them with his eye meds...I love being with Sam and most of the time, really ENJOY it but I wish he could show a little progress! When I think of the future it is so scary to me, Will he always be a toddler? When he's 20 and I'm 60 ??? Thank God he's a midget!!!!!! Sometimes I get mad when I get the impression from people that I do nothing but stay home all day! Listen, I used to be a probation officer supervisor and not have the responsibility I do now!! It's a different type of responsibility but it's more heavy than anything I've ever dealt with before!
Everything is an ordeal because we have to think about how Sam might react. There are some restaurants we don't go to because he cant handle the noise/echo factor. He flips out in Cracker Barrels, Sonny's, any place that echos...and he can't deal with waiting in line for anything. We don't like him to be in any crowed place because of germs. When we go out to eat, I take my trusty Lysol or Clorox wipes and wipe down the highchair and table because of the germs. And we always set him between us because it takes both of us to feed him and keep him occupied.
On Fridays we try and schedule appointments and do errands so Sam doesn't have to go because it's such an ordeal. Next week I have a doctor's appointment and Jon can't get off, so I have to take Sam. I'm sure that's gonna be a pretty picture! Poor doc will probably go crazy. Sam doens' do good in doctor's offices, high ceilings, waits...it's rough! He's so little people just think I have a cranky baby but sometimes he gets so wound up it is embarrassing! We have a relative who is going through some health issues and others don't understand why we can't be there more....well it frustrates me because I feel no one understands our life! No one has any idea of what we have to do in order to make it through, just day to day life! One time somebody told em that I make it look so easy to deal with a special needs child...I just looked at the person and thought "you have no idea of what it takes "
Since Sam is 6 years old, I have learned do's and don'ts and I live by HIS way because it just makes life easier not to try and fit him in a mold. We don't make him perform, we flex with him so it's easier for all of us. We do most of the things we used to do, we just do them differently...When we go out to eat, we go somewheres he can handle and if there is a wait, one of us walks him in his stroller until his food is on the table. And it doesn't matter who we have with us, Sam comes first. Often we have guest speakers that we take out to eat, but we do it on Sam's rules:) We still go on vacation, we just gear it around Sam's needs. He can't get his head wet so we don't do water parks as a family anymore, nor do we do anything that requires waiting in line. Thankfully the theme parks have handicapped lines and that's what we are planning to try next month when we go to Disney. If we go to the beach, after a while one of us has to bring Sam back into the room so we stay right on the beach and keep everything close.
We take his snacks and drinks. I just learned to take straws with me as Sam can't drink from a cup and not every wheres has straws anymore! I learned that at Hillsborough State Park at the snack area. I had to give him sips out of the round top of the juice bottle I bought for him.
So I don't mean to whine, so many others have it so much harder than we do and Sam's such a roly-poly joy but there are times when I feel the pressures around me and wonder HOW can I do everything that I need to do? I can't be as involved in the boys' school as I'd like. I JUST had a real conversation with Shad's teacher and half the year is over!!! I was much more involved in Steve's school when we just had Steve and I worked full time!!! I feel guilty about not being there for them as much as I'd like to. Steve was in 3rd grade before he went on a field trip alone! Now those two do all of their stuff without us. With Jon working two jobs and me with Sam....We did make it to most of Steve's basketball games although there were a few, that Sam just couldn't handle and me and him sat outside but at least we were there!!!
I'm not involved in the church as much as I'd like to be. Either Steve or I have to be out with Sam after the singing. He can't stay in service unless he falls asleep, plus there is his eyedrops which usually got out of whack on Sundays anyhow! Even doing simple things like Ladies Ministry is often more than I can handle. And also sometimes I feel so raw, that I don't feel like being all positive and uplifting!
Life is very complicated for us. It's worth it to have our little Sam but it's not easy. I've always had to have my ME time just to read or walk around the mall, or whatever and that's pretty much gone. When I do go out even if it's to get groceries, I feel guilty and anxious because I've left Sam. Now that Steve is 14 yrs old and so responsible, we do let him keep the little boys while I run to the store while Jon is at work but I'm calling every few minutes. It is easier than having to take them all with me or waiting until Jon is home from work.
Anyhow I've whined my limit...I try not to whine much as I see so many other familes going thorugh things and I realize in many ways we have it easy...but sometimes I need to vent!
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