It is now 4 am.… Insomnia has won it’s battle against me once again.
This week I have not slept barely any hours more at night than a newborn baby.
I will be taking my son to several specialist appointments this week trying my best to advocate for his well-being. Unfortunately this is a 1 woman job here.
I have not an ounce of support from family to help with these absolute hell-ish appointments. The goal is getting to the bottom of these potentially attributing factors to his sensory issues. Perhaps it is simply a metal toxicity buildup from those aforementioned shots that I immensely feel affected his sweet yet sadly delayed neurological delays. I found out from a grueling comprehensive blood-work and stool sample tests that he is allergic to so much it is insanely overwhelming.
It does honestly break my heart at times seeing him function on such a lower functioning level. The veil is dropped right now as I am so raw.
He is 6 years old and is so far off from crucial things like even an unprompted sentence of more then 4 words (“I want crackers please.” is his longest).
He puts his shoes on and grabs my flip flops to put on my feet and says
“Ok car!” meaning in his adorable yet mysterious mind that he wants to go somewhere. That warms my heart. I want So so very badly to hear his thoughts that I sob hysterically sometimes wishing that we had a verbally communicating relationship where I could actually hear his sweet voice all the time- instead of his small tantrums when he gets frustrated that he cannot communicate his needs. He has gotten very good at non-verbally communicating these by grabbing my hands and saying one or two words to express his pressing needs. However I realized that if I continue to abide by this that I will essentially continue to be raising a 2 year old son…
This again is what most Autism parents Do not talk about. We want to sugar coat things about how much we have learned and how much hope we have for their futures, yet we do have those days when we fall apart. Our hopes and aspirations can become a light at the end of the tunnel that dims to darkness. I will never ever stop researching, advocating for new therapies, fighting with the insurance companies to cover them, reading every book I can get my hands on for new insight even if it seems like futile effort at times.
We had such a fantastic day today – we truly did. Filled with so many cuddles and laughs. My heart overflowed when he grabbed my hand to stroke his face and tickle his chin and stomach more and more and more! It was so joyous the grin on my face made my cheeks hurt. Yet I am completely dreading his radiology appointment to have a upper GI exploratory MRI where he has to fast (not even water), and the hour drive to St. Petersberg All Children’s Hospital will be sheer torture. If he even has a stethoscope put to him, instrument to look in his ears, or take his temperature it results in thrashing and me usually ending up with a few headbutts and a bloody lip. It is a difficult task and job in itself to be a single mother handling this navigation alone.
Not to sound like a martyr – these are the cards I was dealt and he is my angel. Sometimes it is just plain difficult for me to not bitterly resent his father for never even going to one therapy appointment, one doctors appointment, one specialist appointment in order to get him diagnosed, and also the fight to get him into the best schools and newest therapies. I wish so much I could let go of that (dare I say) hatred.
I know it is not healthy– but sometimes I can’t help but remember all the abuse towards me and then of course the complete lack of involvement of his sons life only seeing him once a week. It not only harbors ill feelings but deep sadness for Lincoln that he doesn’t have 2 parents- he has a mother that bends over backwards for his needs and a father that barely makes any time to care for him. I have said incredibly nasty things that at times I regret… calling him a “sperm donor” wasn’t exactly my finest moment. I at times wish I could take it back but other times feel it was completely warranted.
It is honestly wearing me incredibly thin. My auburn red hair is massively turning grey. Wrinkles are abounding.
Weekends come when I have my one day off yet I feel so exhausted I cannot even fathom leaving my apartment to decompress and that sometimes surfaces in not very healthy ways. Something has GOT to change! I do know that I can handle anything, but sometimes wish so much that it all was not completely on my shoulders. OK enough with the semi negative spewing!
Nothing great in life comes easily.
I’ll never give up my unwavering faith for my sweet Lincoln. I’m reminded of this cheesy song by B.O.B. and Taylor Swift that touched my heart and aptly applies to my situation “I wish I was strong enough to lift not one but both of us. Someday I will be strong enough to lift not one but both of us.” This will be our reality- I do not doubt for one second!
ariellemegan 