I get a lot of questions from those around me asking “how do you do it?”
I’m always perplexed by this question.
How could I NOT do it?
How do I love my kid? Seriously? Have you seen this face? What’s NOT to love?
How do I survive with little sleep? That’s easy. Caffeine. Lot’s of it.
How do I survive the worry? A therapist/friend that comes to visit once a month. Even then the worry over finances, Parker’s health and the latest BNP results still leak through the edges of my guard. It overwhelms me on a regular basis. I do a lot of praying. And hoping. And I spend at least one day a month in the Temple. I’ve found this last strategy to be the best when the going gets the toughest.
My house isn’t always as clean as I’d like it. Dinners aren’t always as grand. And I have way more great homeschooling ideas than I have time to actually implement.
I certainly don’t do it all.
I’m often a flake these days. I start things and then can’t finish them. This drives me CRAZY. A Type A Mama ALWAYS finishes what she starts. And finishes it well. Unless you’re a Type A Mama to a medically fragile little boy with special needs. Then you drop what ever you’ve started when your kid gets sick, or his heart rate goes wonky. To survive being a special needs Mama you learn that you are limited in what you can do while juggling the balls that keep your kid breathing.
You have no idea how hard this was for me to learn. And sometimes I even have to learn it again. And again.
‘No’, I can’t do that right now, could be one of the most important sentences a Special Needs Mama can know. If you can’t utter those words quite yet make yourself a sign:
No I can’t (fill in the blank) right now. My priorities must first be to my family and my medically fragile child with special needs. I know you understand.
Is it worth it?
You bet it is. In spades. The love, the joy, the lessons I could never have learned any other way…..make my life as a special needs Mama something to be thankful for.
So, tell me about YOUR life as a Special Needs Mama……
My hubby hates that question so much! How do you do it? Uh, maybe because I have no other choice! I don’t do it, my son dies, the family falls apart. Duh!
Its not easy, but I wouldn’t have it any other way after 6 years of it!
I hear ya, girl. I hear ya. xoxo
My issues are with Work. I missed so many days of work last winter due to Asa being sick that I bordered on termination for a good 6 or 7 months until the evaluation year restarted in October. I was told to get an Intermittant FMLA for him..but that is based on approval from Human resources. Well, the approved FMLA ends today. And the hard part is feeling guilty to my co-workers because I miss work. I work in a hospital and we already run short staffed a lot at night. Tonight will be another night of missed work.
Pam, that must be hard. I wish I had a solution for you. Hopefully, as Asa gets older, the sick times will be much, much fewer.
xoxo
My thoughts are much like yours. To me, it is a no brainer. You love each of your children the same and will do whatever is necessary for them. Including your medically fragile one. I am getting better at letting myself off the hook. I pray A LOT. I cry just as much. Sometimes I think it would be great just to unload it all to someone who doesn’t say anything, except, it’s ok to feel how you feel. My house is in general disarray. Sometimes dinner is peanut butter and soup. Sometimes, catching a nap for 15 minutes while a certain girl is getting a feeding right beside me is also in order. Bottom line, five years later almost…the Lord is how I “do it” bc I know the strength is not of my own.
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Michelle, I hear ya girl. We covet prayers…especially when our own faith is wavering.
xoxo