Here is my confession: I’ve really been avoiding this blog, even though I love writing, I love helping people who are new at this tube feeding thing.
There have been other things to focus on – my older daughter got married last weekend, my second oldest son just graduated from nuclear engineering in the Navy and is home on leave before shipping out, my 3rd son has been playing for his high school’s volleyball team and Natalie just turned 13!
All good stuff, right? Right.
However, in all honesty, these days I have been quite weary and worn out from all the special needs. All the meal making, all the meal feeding, the dependence. At 13, Natalie cannot read a note I leave her, so I cannot leave her a note if I want to run to the store before she awakens. She cannot possibly feed herself, although she eats part of a meal orally at least once a day. So someone (mostly me) has to feed her 4 times a day.
I adore Natalie. She brings such joy and sweetness to my life. We have wonderful conversations that I enjoy so much. She also has meltdowns that only I seem able to help her make sense of….
I wouldn’t trade her for anything.
But right now I am exhausted by it all. Thirteen years of it. A very wise person that I turn to for support in this recurring situation tells me I need time out for myself. So I told him I would go for a walk at the mall tonight (not to shop – but at the mall my outdoor allergies are not assaulted) because I can walk and relax and regain my sense of self. But I forgot! It is 9:30 and I am off schedule – still feeding her (although she is asleep) – because her brother had a volleyball game. Then we sang happy birthday, etc. I cannot go to the mall now – even if I wanted to, I am just too tired.
So tomorrow I am going to leave the house right after her bus picks her up. I am going to go have coffee with a dear friend. I am going to sit and center myself, remind myself that I am worth taking care of – that I matter. This has always been a struggle for me – it is not new to Nat’s presence in my life. But her presence makes it a bit harder to battle. Lack of time and all. But it is essential.
How about you? Do you struggle to stay whole in this special needs life? How do you cope with it? What do you do? I’d love to hear your experiences, thoughts, suggestions. Right now, I need all the help I can get!