There is someone out there who has it much harder than I but I lose sight of that when I'm right in the trenches of things in regards to Aaron's personal care. I'm entering a new phase of my life that I'm to be his caregiver for however long I am. It seems that the days are long and the future is so much farther away than I anticipate. Half the time I don't make any sense to anyone or myself for that matter.
(barely a year old, clever little tyke wasn't he?)
I'd like to know who taught this child to speak. I'm kinda regretting that he can. A typical routine we have is this:
Me: It's bathtime A.
A:Clothes-on!
Me: First we have to take them off then we'll put them back on again.
A:Music time?
Me:Do you want music time?
A:I want music time.
Me: First we have to take a bath.
Me:Music time.
Me:Yes Aaron, you can have music time, after you take a bath first.
Me: Bath first then music time.
Me: Yes! That's it. (washes his hair in his shower chair)
A:Music time.
Me:First I have to wash your hair, then your body then you can have music time okay?
On and on this goes day after day if it's not music time it's some other activity.
If you have small children at home then you'd know the show Max and Ruby. Ruby's little brother Max has very little verbal skills and he's a pain in the arse. (Can't stand the show for that reason!)Max reminds me a lot like Aaron. (This brought a smile to my face.)
The only time I seem to get a break is when he's sleeping.
I totally feel guilty everyday counting down the hours until bedtime.
(barely a year old, clever little tyke wasn't he?)
I'd like to know who taught this child to speak. I'm kinda regretting that he can. A typical routine we have is this:
Me: It's bathtime A.
A:Clothes-on!
Me: First we have to take them off then we'll put them back on again.
A:Music time?
Me:Do you want music time?
A:I want music time.
Me: First we have to take a bath.
Me:Music time.
Me:Yes Aaron, you can have music time, after you take a bath first.
Me: Bath first then music time.
Me: Yes! That's it. (washes his hair in his shower chair)
A:Music time.
Me:First I have to wash your hair, then your body then you can have music time okay?
On and on this goes day after day if it's not music time it's some other activity.
If you have small children at home then you'd know the show Max and Ruby. Ruby's little brother Max has very little verbal skills and he's a pain in the arse. (Can't stand the show for that reason!)Max reminds me a lot like Aaron. (This brought a smile to my face.)
The only time I seem to get a break is when he's sleeping.
I totally feel guilty everyday counting down the hours until bedtime.
Januray 2000
look at those little itty bitty feet
one of my favourite photos of wee baby Aaron
14 comments:
when i was reading your conversation with aaron, i was thinking "that sounds like max and ruby". we love max and ruby (m's fave) and are watching it right now. how funny.
I feel for you Laura, it must be difficult, I don't have a child that needs my help like yours does, but I have a little MIL who has dementia and she is an insulin dependant diabetic she needs help with just about everything and no matter what you just told her she will forget what you said,so I tend not to bother telling her little things I know she would enjoy,its wrong but my patience is short.I retired 5 years ago so did hubby we thought we had the world by the tail, then she moved in and our plans went into the garbage, we haven't even had a holiday together alone in all those years.We can't leave her alone for 5 minutes,I can't trust her to do anything for herself.She leaves me more messes, worst than a new puppy.
I have an 88 year old child .
Guess what Laura she is not my child and I resent it very very much,in fact most of the time I am angry about this situation, when I got married I did not sign up for MIL care I am positive its not in my marriage certificate cuz I checked.
I understand that you are frustrated,you might not want to hear this but later in Aaron's life you will have some decisions to make hard ones,remember this Laura do them before you are too old to enjoy a bit of peaceful life of your very own.Aaron will be ok no matter what you decide.
god has made you a strong woman...it's ok to count down in my eyes...i do.
I have two special needs brothers, both brought up by two very different women (my mothers, biological and step) so I understand a bit of what your life must be like. I have watched over the years, and seen how differently each brother is, and know in my heart that if you do the best you can, you will succeed.
One brother is in and out of jail and group homes. He did not get the attention he needed.
The other is pretty independent--he lives by himself, has held a full-time job (laid off) and has a very special relationship with my mother. While he will always be "taken care of" by all of us, we understand his need for his independence, and are confident that if we give a little, he gives a little.
I don't know where I'm going with this, but do know that there are people out there to commiserate with. :O)
back when Jordan's care was total constant hands on Laura I thought that would never end but now he is 12 and slightly more independent with his care and those days slipped away. I don't miss them, its too hard and its too much but somehow us supermoms get it done :) This too shall pass. loves ya xoxo melzie
Don't feel guilty for counting down. I do. I think most mothers do and you have more reason than most to. And absolutely your life is hard. It's very, very hard. It's ok to acknowledge that - it doesn't make you a bad person or a self-centered person. Remember that we all love you. I wish I could make your life easier for you but I can barely manage my own and I have much easier circumstances. Hang in there.
And, for what it's worth, my word verification word is "pipatio"... LOL, is that the math department's outdoor veranda?
I'm so sorry things are so hard for you. I had a conversation with my sister last night and we talked about how incredibly hard it must be to be a single mom, let alone a single mom to a child who needs extra care. I don't know how you do it. I really don't. Please try not to let the guilt get the better of you. Every mom looks forward to bedtime, at least some of the time.
Hang in there, friend.
When you have a minute go check out my blog I tagged you!
Someone should call child protective services on Max and Ruby's Mom. She always leaves her young kiddos home alone. Your conversation totally reminded me of Max and Ruby. Tristan loves that show. I don't mind it nearly as much as Callou. Now that kid is a spoiled Brat! It drives me nuts.
Aren't able to get some respite? I mean I would think you should be able to qualify for a nurse or an aide to come in and give you some breaks? No? ((HUGS)) I wish I lived closer so I could help you!
I don't want to start a bloggy comment war but I just can't move on without say one thing. You have a comment above won't say who bet you already know which one. LALALALALA UGH Ignore that one! If you don't get it send me an e-mail. I don't have yours.
My thoughts are with you Laura, Im sure there are so many times when you could use a break. But you know what???? God knew when he gave Aaron to you that you would love him and take good care of him, and you have certainly done that. Its ok to count down the hours till bedtime...you are doing a great job!
My heart goes out to you because I can't even imagine how your days must be. It takes a special person to be able to do what you're doing, taking care of Aaron...I've always thought of you as special because of that. xoxo
I cannot imagine what it is like. It must be so difficult, so hard and seem so so endless sometimes. A little bit of a Sisyphos job ;)
I know you love little A to pieces, and so does he. I am much more worried, that you are way too hard on yourself!
And....I count down to bedtime too!!
that first picture is so cute of him smiling in the mirror!
You should NOT feel guilty for counting down the hours until bedtime! Laura, I do this and I have another adult in the house to help me out in the evenings! You are doing this all alone, day in and day out, all my yourself. You shouldn't feel guilty for the quiet in the evenings when you can call that time for yourself!
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