Day One On My Own

So Charley went back to work today. Last night was so hard without him. Laelia slept a little, but mostly demanded lots of attention. I would wake up after ten minutes of sleep feeling her eyes boring through me. Then it was: hi mommy! are you awake now? are you going to play with me?! that would be so much fun! let’s play right now! yeay!

We got back from Placerville last night. I think Laelia misses grandma Christina… or maybe that’s just me… around 6am. :) We’re tired from all the traveling. I hope all the traveling wasn’t too hard on her. I’ll post another blog about Thanksgiving as soon as I get these pictures off the camera.    

I did end up getting her up, dressed, fed and the laundry started before heading out to her doctor’s for casting. The doctor left early yesterday so we got home from our trip and were on our way to the hospital when they called to reschdule for today. So it was me by myself with no money for parking (oops) and ten tons of baby stuff (with no husband pack mule). Her left wrist looks good and will come out of the cast early. Her right wrist looks worse than it is (with a large bruise and bent thumb), but will need a lot more work. Her right foot looks better and will probably get surgery soon. Her left foot lost a toe (under the foot, it didn’t fall off!) and is not as good. Charley and I want them to cast above the elbow on her right arm next time, but bending the elbow like we do for PT so it anchors but also is helpful. Laelia cried through the whole thing and then slept soundly after her lung workout. There was a ten-year old girl getting lower body casts off after what looked like a car accident. Every time that little girl cried, Laelie would start. I don’t know if it was empathy or foreboding.

We got home and got the mail where this letter was waiting for us:

Dear Mr. & Ms. Wesley,

This is to notify you that I am closing Laelia’s case with the California Early Start program at the San Diego Regional Center. This decision is based on the fact that she is not eligible for services at this time due to her diagnosis which is considered solely low incidence. If in the future you have concerns regarding Laelia’s development bla bla bla contact us again bla bla bla.

We were expecting that since she is not developmentally disabled and she doesn’t qualify for a ton. So why did it feel like a punch in the gut? I’m still trying to find some government assistance for her care since I’m told that’s why we pay taxes. According to the California website we don’t qualify for SSI, but other people are saying we maybe should apply anyway and when denied, get a lawyer. After today alone with the baby, I don’t have the energy to deal with it all. I’m tired!

Well Charley walked in the front door from his first day back to work only to find me with a half-naked baby (her clothes were covered in plaster from casting), a messy house, no dinner and the lights off. Why were the lights off? Because I was too busy with the baby to turn them  on when it got dark. It just seems like three full time jobs, especially after casting.

So today was hard. She went through a million diapers and she becomes a different kind of awkward after each casting. And the whole time I felt guilty for not holding her more or playing with her. There’s just so much to do. I still need to do her OT and PT and give her a sponge bath, um, and get eight hours of sleep someday. But on the positive side, we did it. Laelie and I successfully managed to stay alive when left to our own devices. It’s a miracle. :)

3 Responses to “Day One On My Own”

  1. Phyllis says:

    hi Alexis!!

    i know you have heard it will get easier.. and its hard to believe i know.. there will be a day when you realize you dont need as many baby supplies.. someday we plastic carrying californiains will have a few bucks on us.. that or the parking ripoffs will cease. inresponse to an earlier post about you going back to work.. because of rylees school schedule, i can not be the one who always keeps laelia, but wanted you to know that i can be the one that if something goes crazy one day.. i can be there. i know you really dont know me.. i know you barely know me at church.. but i have taken care of ppl with disabilities all my life.. i loved it soo much i got my degree in social work so i could make a difference in their live. ofcourse for now mommy is my most important job, so i am not using my degree much at all. while on vacation i talked to lincolns cousin about you and laelia. well he and his wife. he is disabled.. he has muscular dystrophy, wheelchair bound. from what i have been told he is the longest living person with his form of the disease, and one of the very few to have children. his wife is his caretaker. she gets paid to do the things for him that most families get from outside sources. she said too that you should be able to get ssi, and lots of other stuff that i am not fully aware of, and said if youd ever like to talk of get help with anything she would more than happily help you. they live in northern california. well.. congrats to you mommy.. you are doing a terrific job.. and by the way.. which mommy gets 8 hours of sleep???? hope to see you sunday

  2. Robin Clark says:

    I am not sure if the email I sent to the author of the website was received. I know Charley’s family…older son is the same ages as Linda…in marching band,etc.

    I work for the Regional Center in this area. I talked with the Early Intervention Service Coordinator. She said that you can talk to the Board of Ed in your area for a referral to the agency that is funded to work with your daughter since her condition is listed as low incidence. In Placerville that is Pride and Joy. They should provide the services that your daughter needs through the funding they receive. I hope that will be helpful.

  3. Kristen Sweeney says:

    My mother had a great deal of trouble with me, but I think she enjoyed it.

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