-

 Minus 1

I had hoped to have more in this by now, and I have no idea why or what I am comparing this against.


In this section, which will be the last before my actual surgery,  I’ll talk a little bit about something that I’m thinking about, something that is unexpected.


Last night was another up and down night with Anna so my sleep, as usual, was in 2 or 3 hour slots. At least when I do sleep it is deep because I had 2 dreams last night, both of which stick with me even now at mid day. Usually, if I do dream, by mid morning the whole memory is pretty much gone.  Not these.


In both dreams I had in some way or another lost Anna, either by her going away or by being lost somehow, and I could not do a damn thing about it.


I can’t help but think about how, as a parent, you get so ingrained into the care of your child that you literally do loose track of everything else. No matter how much you bitch and moan about what you are doing, how long, repetitive, wearing, whatever it is, that is all you focus on and you loose track of the gifts and pleasures you have. You become so numb that you feel nothing unless it is traumatic for yourself.


In my dream, in spite of all the hardship it has, I had a huge sense of loss, like a real part of myself was gone.  I did not like it at all.


I wonder how this is related to my “giving” up some of Anna’s care. I’m not going to analyze this and just wanted to write it out so I could remember to not loose sight of the gift that Anna is.


I have no idea if anyone will ever even read this…..



Comments

  1. AnonymousSeptember 9, 2024 at 6:15 PM

    from Paul's wife/Anna's mom: Anna is used to her night time routine with her dad- fingers crossed she can and will adapt. Also, she has outbursts of self injury- giving herself blackens, scarring her knees with her teeth, pulling peoples hair- all affect our ability to find respite. The few agencies we've looked into will not take a person like Anna.
    She doesn't talk and her communication of her needs is spotty when she is distressed- we 'control' her versus interact with her at these times.
    Adding her distress is her digestive problems- which adds to my distress as the one who buys and cooks the food. She gets bloated and has many runny stools for a day or more, depending on what and how much she eats. She seeks out food, open cupboards and refrigerator/freezer numerous times between 2-5 pm, especially when it's me or the other caregiver watching her. There are many times when she screams and throws herself on the floor, banging her head on the floor .
    Paul is the one who sternly redirects her to the couch or outside to sit. His support will no longer be available while he recovers. Unfortunately he will be sitting or sleeping while she is screaming out.

    ReplyDelete

Post a Comment

Popular posts from this blog

-
 Well I'm home and now almost 2 days post surgery.  Denise is fully in charge. Yesterday when I got home I didn't feel that bad, but I knew that was primarily because the surgical nerve block had not worn off yet.  As I write this now (approximately 40 hours post surgery) I can tell the honeymoon on pain is over and the next few days I will be helpless for the most part, the pain is quite intense in spite of my following the pain management plan given.  Surgery night (Tuesday Sept. 10th) was hard on Denise, Anna had a rough evening, difficult sleep transition, some screaming; all they typical behaviors when there is a change in the house.  Denise did give Anna an extra sedative dose and she did get down at 10PM and did sleep through the night. Wednesday morning Anna had a good morning, Denise said she had a large BM (her agitation many times is a sign that she has a full colon) and was sent off to her day program with no real issues, per Denise. Our caregiver Gi...
Read more
-
I've decided the first note should be on who we are and why I decided to do this. My name is Paul, my wife's name is Denise and our daughter is Annelise (Anna). We also have another daughter Eva, her husband Justin, and a grandson CJ. Anna has what is considered an ultra rare genetic condition that has resulted in her, among other things, being significantly developmentally delayed. The condition is not important but if you interested in learning about this ultra rare condition please check out the Champ1 Foundation (champ1foundation.org). A detailed summary of Anna's life story can be found on their website. Anna does, and will require support and care for the rest of her life, as well as continued medical care and evaluation(s). For Denise and I, going on 15 years now the primary caregiver role has been myself; Anna just listens and reacts to me better, she always has for some reason. In about 2 weeks now I will be having a total knee replacement and will be unable to car...
Read more
-
  ABOUT ANNA Anna is complex in many ways. She is basically non-verbal, her “language” is a mix of using PECS, a few simple words, an iPad App (Go Talk Now), and hand gestures. She does speak a few simple words, all single words and never a phrase. For a reason we can’t understand, at the moment we are seeing more and more moments where she is trying to communicate to us about her wants and needs, we are trying to understand what she is saying, and all we are doing is getting frustrated with each other because no one “get’s it”.  This has resulted in more self injury behaviors in Anna, which is how she typically shows her frustration. Anna will hit herself, sit down and bang her head of the floor, bang her iPad against her head, bite herself or us, pull hair, push furniture over, pull pictures off the wall, ect… We don’t have a solution to this other than to try and redirect her and prevent her from hurting herself more and working to “Anna proof” our home. For the last ...
Read more