Currently, my challenges revolve around acceptance of what my life has become, specific to disability #2 that prevails in our house. I am an active student of buddhism, and practice meditation and yoga. These things have helped me with coping skills and perspective. I am happy to have found them, as I realize my skill are lousy, even on a good day.
My son is 10 1/2 and is has recovered from an Autism Spectrum Disorder (PDD-NOS to be exact) about 5 years ago. For those 5 years he's been going to school like a regular kid, no longer disabled by his label. Although Yale diagnosed him at 2 and also took away his diagnosis, I still consider him as a child on the spectrum as there is no cure. There are no real signs of ASD, standardized testing and teacher feedback is age appropriate or higher, his biomedical testing doesn't indicate any typical Autism signs like glutathione deficiency or metal toxicity. He lives stigma-free as we kept his diagnosis from his teachers and peers upon entering kindergarten. He may not hold my hand in parking lots anymore and prefers to talk to his friends on the phone rather than me, but he is still my big boy. He is really into baseball and basketball, and loves practicing his yo-yo skills and acoustic guitar.
My perfect sweet boy has P.A.N.D.A.S., a sensitivity to Strep, and also has Lyme but on a very small/suppressed level. Today Leo's symptoms are facial tics that come and go in severity based on what is bacterial/viral load is. Homeopathy, Rifing, and of course out-of-control Nutrition are my key tools.
On Leo's 10th birthday I had a minor breakdown. Turning 40 didn't bother me, being still overweight didn't bother me, but hey realizing that I've BEEN A MOM for a decade really got to me. I am not in the mood to caveat and talk about all the good things about motherhood. Of course I adore and love my children,. It's that my life's sole purpose has been major disabilities and disease.
Learning.
Fighting
Grieving
Trying to sleep
And repeat
You know the drill!
My daughter Sydney was diagnosed with Lyme Disease and 2 other Lyme related diseases (Bartonella and Babesiosis) this past fall when Leo turned 10. That was hard. Again? That initial craziness, the ramp up. Different disability, but very much the same when it comes to all the categories we Autism moms can relate to. My daughter Sydney is going to be 8 in a few weeks. She asked me if she still will have Lyme disease on her birthday and I can now say YES.
Sydney is amazing. A friendly, open, empathetic soul. Loves animals and nature and can't get enough of her family and friends. She is very academic and is a very school oriented person. She is addicted to Cam Jansen and Junie B. Reads them over and over as her favorite past time. She loves dance and performing, her favorite thing in the world. She also has P.A.N.D.A.S. symptoms on top of her Lyme Diseases.
I'm back to attending health related workshops and here I see my new disability merge with the old. New Lyme friends and my very best of friends (Autism moms) in the same room.
I find myself again struggling with acceptance. I wish I could let go of my desire to be a regular mom with a regular job. I don't want to be a specialist in autism or Lyme or anything else in the health category. I have no choice, this is what it is. Why is it hard for me to accept? I am no longer angry that my daughter lives with chronic 24/7 all-over body pain and has missed half of 2nd grade. The angry phase was no fun. Phew.
I worry about my kids' futures constantly. Leo asks, "Mom will I always have tics?" I say "No" although who knows.
I look around and compare myself to other moms, why do I struggle so much? I am my own worst enemy as it seems most people have figured out how to cope with their own challenges in life.
I want to never read a label again, go back to advertising, and start smoking.
I look around and compare myself to other moms, why do I struggle so much? I am my own worst enemy as it seems most people have figured out how to cope with their own challenges in life.
I want to never read a label again, go back to advertising, and start smoking.
2 comments:
Whew. So understand this! Though Harrison is still NT, I know he's got some allergies issues I'm going to have to tackle soon (he always has one red spot on his face). I don't want to deal withmore food issues. I want to be done. I don't want to detox myself, because I know I have lots of the same crap in my body that Hutton does, and that my toxins are partly to blame for his autism. I want to do normal, everyday things and not worry about the half-life of chelators. Then again, when I finally feel we are all healthy again, or as close as possible, I know it will be worth it. (Or at least, I really hope so!)
I feel for you Laura. I can't blame you and I'd put it off as long as possible too. Who wants a longer list of voo doo crap to buy?
And detox is just no fun. I am doing it AGAIN because I have been such a mess lately with Sydney's illness, and have regressed with my wellness plan (yeah, like it had a chance!). I am doing all of us, DH included. So now I'm in a bad mood all the time!
I agree Laura, it IS worth it in the end. Leo ironically is the HEALTHIEST person in the family. I certainly wasn't healthy when I had him even though I "did everything right" and *thought* I was so healthy! I get sick thinking about it.
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