Amongst Chaos we acknowledge Healing

This past week has been another blur, as there has been a rapid stomach bug which nuked the family home and we had another extreme infection for Roo which required hospitalization. The stomach bug, I can deal-- it's part of life, right? The infection (ear infection gone to heck in a hand basket)-- Mastoiditis. Now this was just too close for comfort. 
From Wikipedia, the free encyclopedia....
Mastoiditis is an inflammation of mucosal lining of mastoid antrum and mastoid air cell system inside[1] mastoid process, the portion of the temporal bone of the skull that is behind the ear which contains open, air-containing spaces.[2][3] It is usually caused by untreated acute otitis media (middle ear infection) and used to be a leading cause of child mortality. With the development of antibiotics, however, mastoiditis has become quite rare in developed countries. It is treated with medications and/or surgery.[2] If untreated, the infection can spread to surrounding structures, including the brain, causing serious complications.[4]

She literally was millimeters from having direct pocket of infection in her brain. That is a big 9-1-1, unequivocally. The thing that it is most sobering to me is the line "used to be a leading cause of child mortality". This could have been our child still today. Because Roo deals with ongoing damage to her immune system from vaccinations, systemic bacterial infections, prior toxic insults of: antibiotics (now allergic to), heavy metals, chemical exposures etc -- so she is used to LIVING IN PAIN. This is why she didn't tell me anything other than she had a headache & her tummy was starting to hurt the evening before I discovered her engorged ear. Her long blonde locks could simply flow over her ear enough to mask this looming threat.

I feel it is so important to point this out, because she IS VERBAL (excessively sometimes & I say that with compassion, because we've only come from non-verbal, not all that long ago, with 3/4 of our four-some). Roo is considered to be extremely high functioning (for lack of any other descriptor). She can tell me she is in pain & yet she doesn't because that is her NORMAL. This makes my own stomach tumble with nausea.

Children today affected with regressive onset of Autism or other neuro-immune disorders are medically SICK. I have 3 other children more verbally impacted by their regressive onset Autism, 2 profoundly (which I delineate in their spoken words are 90% basic needs and often they are unable to answer simple questions). I hear families in our own Autism community discussing how different Autism is from a low functioning child to a high functioning child. I'm here to tell you, yes- all kids ARE different, yet despite my own 4 being spread out on this *spectrum of injury*-- THEY ARE ALL STILL SICK KIDS. They live in pain. EVERYDAY. Roo is able to cry & tell me "I'm just never going to feel well" & my Bella can only cry & not indicate where/why. Both scenarios for a parent are torturous. 

I think we are missing the boat when we start focusing on where a child resides within the broad Autism spectrum, when really it should be where they are at medically. Yes, living with a child whom will smear feces on surroundings, themselves & otherwise is awful (we still live that somedays)-- yet, so is seeing a vibrant soul at age 6 shrink in such crippling anxiety because that is how her Autism affects her outward >behavior<, all from the sludge of the medical battle going on within. 

Parenting a child with high functioning Autism is not easier from parenting a child with low functioning Autism, when I look at it foundationally (medically that is). Behaviorally it is different, neither is easy. Across all 4 of our Autistic children, we are still searching, adjusting, researching, trialing each & every painstaking intervention to support them the best we can. I still have many people I have to spend excessive time with to educate on my highly verbal child's medical issues, even much more so because she is higher functioning. In summary, many people we come into contact with tend to judge Roo's behavior out of thinking she is being babied, or has a mother with Munchausen syndrome-- simply because Roo is able to talk & is a bright child. This is a sad misinterpretation of the truth. Furthermore, even she is unable to express effectively when she is in elevated PAIN. Half of her hospital stay this past weekend was filled with silence and me interpreting her body language because she could NOT verbalize even to basic yes/no questions.

All this aside-- I am grateful, that God was with us once again & we discovered her infection in the nick of time. I am grateful she did not react adversely to the IV antibiotics which cross-reacts with a class she has become very allergic to. I am grateful, to have my girl still in my arms in this broken world. And, I am grateful that each of my children ARE HEALING, through the rescue recovery mission we have been on these past 4 years after discovering the MEDICAL foundation, under each of their presentations of regressive Autism.

On the eve of Autism One, I cannot be anything but humbled seeing what my children endure daily. I had an absolute torturous day encompassing a pluthera of specialty appointments, yet my own whining is a fleck of dust in the sandstorm of challenges my babies power through each & EVERY day. Thank you God for giving them the tenacity you have, and me the ability to move forward with each of them, even if I am not graceful, I am moving. Thank you for the incredible loving spirits you have equipped each of our babies with. And THANK YOU Lord, for carrying us to HEALING because I feel you with me. In YOUR name, LORD, I Celebrate YOUR HEALING work.

My prayers for the many new families at Autism One (and everywhere on this journey) is that you will walk away with Hope and the next single step to take to helping your child recover. That's all you need-- the hope, will & love to reach your child. God Bless.

1 comment:

  1. Love and hugs to you Tanya. Keep the faith. I know it's tough but know that God is with you and doing great things through you. All my best to Steffi and the other kiddos. Hugs all around.