Challenging Expectations

I sat and waited nervously for the pediatric neurologist, listening to the sounds of hospital monitors, hoping and praying that my son would live. We knew from the very start of the symptoms 12 days earlier, that something was wrong. On the 3rd day of these strange symptoms, the pediatrician in our church group thought it was gas. On the 8th day, parental instinct led us to contact our pediatrician for a more thorough examination.

in the hospital

For those of you who have not already read Our Story, our hospital stay began the Friday before Christmas. I feared the symptoms might get worse over the holiday. So I called the pediatrician, a sweet caring man, who listened to the symptoms I described.

in the hospital 2It was now Tuesday (the day after Christmas) and I had prayed frantically for 4 days, waiting for the prognosis. The pediatric neurologist was a very intelligent woman. At first meeting, she seemed to lack bed-side manner. She was very direct and honest right from the start – something that can only be fully appreciated in retrospect.

She told me my son had a life threatening condition called Infantile Spasms. She explained treatment for this seizure disorder was risky. The known complications of ACTH injections were: heart failure, liver failure, and intestinal bleeding. Without treatment uncontrolled seizures could lead to brain damage and death. The likelihood of severe mental retardation was over 50% even with treatment, and treatment had a success rate of about 70%.1st Christmas

It seemed like there were no good options. Terrified, I asked the neurologist what she would do if it was her child. She explained why she felt that ACTH therapy was the best option. Her experience with situations like this far exceeded my own, so I felt it was best to trust her expert opinion.

The 12th day with Infantile Spasms was the 3rd day of ACTH treatment. He was responding well and the duration and intensity of the seizures had improved. After many tests, EEG’s, MRI’s, CT scan, EKG, blood work, etc. I anxiously awaited the prognosis.

It was afternoon when the neurologist came back with the findings. There was no evidence of cerebral palsy on the MRI at this time, but it couldn’t be entirely ruled out yet. There was no evidence of tuberous sclerosis. There were no abnormalities in the structure of the brain, no evidence of brain injury, and there was no known cause for this life threatening seizure disorder. In fact the only abnormality noted was a benign pineal gland cyst deemed of no consequence.

Christmas in the hospital

I was left with a void where hopes, dreams and expectations once resided in my heart. I had no idea what to expect and I had no idea what the future would hold for my son. I grieved at the loss of unspoken dreams, but I never gave up hope. Over the next 7 years more was revealed. The picture began to form like pieces of a puzzle being put together.

With the dawn of each new day, new dreams were born, new hopes and new challenges.

Our son’s diagnosis include: cortical vision impairment (legally blind), failure to thrive, feeding difficulty, autism, epilepsy, hearing impairment (legally deaf), combined vision and hearing impairment (legally deaf-blind), food sensitivities, irritable bowel syndrome and/or inflammatory bowel disease (and suspected celiac disease which cannot be confirmed without the risk of making him sicker.) He is the epitome of special needs, and the joy of my life!

These are the lyrics to one of my favorite songs. The song is about the expectations we have for our children and challenging those expectations after a life changing diagnosis – The Good by Rachel Coleman (Signing Time):

The Good

It was you and me and the whole world right before us
I couldn’t wait to start
I saw you and dreams just like everyone before us
We thought we knew what we got

And then one day I thought it slipped away
And I looked to my hands to hold on
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
No, maybe we won’t find easy
But, baby, we’ve found the good!

It was you and me and a new world right before us
I was so scared to start
I saw you and dreams just like everyone before us
But how did they move so far?

And then one day I thought it slipped away
And I looked to my hands to hold you
And then one day all my fear slipped away
And my hands did so much more

So maybe we won’t find easy
But, baby, we’ve found the good
Maybe we won’t find easy
But, baby, we’ve found the good!

I found this video made by the parents of a child with special needs. Click the play button if you’d like to hear the tune!

If you enjoyed this song as much as I did and you’re curious where you can find it, follow this link to the itunes store or signingtime.com. I am not affiliated with Signing Time, and I make no profit by recommending these products. Signing Time has been the single most valuable resource we have found for hearing-impaired children, non-verbal and autistic children, language learning, for all children and even adults! Signing makes language learning fun and engaging. Research shows that signing with children will enhance language learning and will not cause further speech delay, or interfere with learning spoken language.

Challenging expectations is an ongoing process. I’m making notes for my son’s next PPT meeting, looking over IEP goals, and planning for the next year of special education (topics for yet another blog post.) My son is non-verbal, communication and daily living skills are key components of his education. I keep the following quote in mind when I think about my hopes and dreams for my son’s future!

Every disabled child is entitled to an appropriate education that will "meet each child's unique needs and prepare each child for further education, employment, and independent living." 20 U.S. Code 1400 (d) (1) (A)

This post is in response to: Great Expectations | The Daily Post


Image Sources:
Portraits/Images of People – ©2014 Liana Seneca, all rights reserved
Mount Katahdin – by mrdubyah – CC BY-NC-SA 2.0 (cropped, enhanced quote added)
The Good.mov – elizaping

Lyrics:
The Good – Lyrics and Music by Rachel de Azevedo Coleman –
© 2006 Two Little Hands Productions. All songs © Two Little Hands Music. (ASCAP) All rights reserved. Lyrics and Music by Rachel de Azevedo Coleman.
P.O. Box 581037 Salt Lake City, UT 84158 • tel: 801.533.0444 • fax: 801.880.5151 • www.signingtimekids.org
(fair use rationale – used for nonprofit educational purposes, It is a promotional material released by Signing Time, it does not limit the copyright owners rights to sell the music in any way, it allows for identification of the music: The Good)
Creative Commons License
Love, Support, Educate, Advocate, Accept… by Liana Seneca is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.

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3 thoughts on “Challenging Expectations”

    1. Thanks Ali! I’m glad you liked it! Coping with grief is an important part of the human experience. Last night as I lay awake in bed, I was thinking about how we – as a family – went from grief and denial to acceptance and hope. It’s amazing to think that I wouldn’t trade him for a thousand “normal” children. He has touched the lives of everyone around him in such a profound and special way. I feel truly blessed to be a special needs mom ❤

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