Tuesday, October 26, 2010

Just here

I received an email from an old friend a few weeks ago, one I haven't been able to share until now. She emailed me and expressed that she knew how hard our life was, but in turn told us how lucky we are. She is single, she is suffering from a recent diagnosis of a major neurological disorder, and she has no children. She said I was "lucky".........what an amazing adjective. I was lucky because I was someones mother, and I could make the difference in someones life regardless of his future outcome. I always say I am lucky, and I believe that, but for someone else to want to step into my spot is amazing. She is afraid she won't get the chance to be someones mom.

So if I were to write my blog today it would be almost word for word of what my friend over at http://reaganleigh.blogspot.com/ wrote. Jude went to bed just fine, but after 1am he was again a wiggle worm all over his bed, moaning, and just not comfortable. He only truly woke up once, the rest of the time he just moaned, and fidgeted. I was in his room countless times trying to reposition him before he did wake up wailing. If he wakes up hysterical there is no calming him back down for awhile. Finally about 7am he couldn't take it anymore. He screamed, and screamed, and screamed. He sounded like he was hurting so badly, and we couldn't figure out what was wrong. He was in a full on tantrum. We vented him, we gave him Motrin for his teeth, we did everything.........until Mike got irritated. He took Jude put him in the living room on his tummy, and walked back in our room.....and then......silence. I walked in there to find him on his blankie, biting his hand again. He wants to be on his tummy ALL THE TIME. We do not let Jude sleep on his stomach for obvious reasons, but if he could I swear he might sleep all night. Today I had had it! I said "I just cannot do this anymore" and I meant it. Of course I didn't mean Jude, but getting up through the night. I am DEAD honest when I say I need either a day off when the nurse is there so I can sleep all day, or check into a hotel to sleep all night. I think I just need one night of uninterrupted sleep. I am sure a lot of moms and special needs moms understand this. Imagine when you had a newborn.......now imagine that never easing up. I am mixing up my words when I speak, my emails have words mixed up or misspelled, and it's really starting to mess with my pysche. Oh, and the button got clogged again last night, so I held Jude down while Mike removed it, and cleaned it.

Poor Emily is having a hard time in math. Math was always her favorite subject, but this year it is burning her out. I have been taking her to tutorials every morning, but I am beginning to rethink this pre-ap math idea. She is making an A+ in pre ap Science, but math is just proving to be difficult for her. I understand this. I was getting on to her yesterday about grade, and the girl got sassy with me. I pulled the angry mom eyes out, and I think her friend Madison was searching for an escape door out of my house. After she and I both calmed down we went to the store to buy her a new binder to better organize all her subjects. I helped her label every divider, and I think she felt much better.

There is a car wash this weekend in Keller to benefit Emily's Smile Boxes. If you would like more information please email me direct.

I will leave you with some photo's.

I think I can crawl
 I know I can
 I am going to keep trying!


Reagan Leigh said...

I totally know how you feel about the no sleep thing! I can handle a few nights of no sleep...what I can't handle very well are days AND nights filled with screaming/crying! Very frustrating! And your point about having a newborn...forever!!! I totally get that too. Most parents have a few months that are rocky...where they deal with a colicky baby (that can't tell them what's bothering them) or no sleep...but we deal with that every single day! Indefinitely! It can be extremely difficult. Thankfully we do get some good days sprinkled in there to keep us semi-sane.

Anonymous said...

Was there something in the air or what? Our kiddo was up at 3am for good - lucky for me she was giggling and kicking instead of crying or moaning, but yep the lack of sleep can be rather daunting! Hang in there and know that there are many families who are living similar lives.


Jamie said...

It must be in the air. Anna has been getting up every hour. We are beyond exhausted. You are not alone!

Amy Genn said...

Our son sleeps on his tummy all night - has for years.....it makes me feel safer in case he spits up during his night feeds...
If he's comfy that way, let him sleep on his tummy :)
Sounds like Jude is suffering from reflux?

Kim said...

Thanks for posting that. It made me cry. Hang in there, "lucky".