This is what it feels like to watch your son deteriorate knowing there’s nothing you can do about it

I’m really feeling beat down today. I’m demoralized and honestly heartbroken.  I use the term heartbroken somewhat often but never loosely. 

When it comes to what’s going on with Gavin, there’s no other work besides heartbreak to describe what it feels like. 

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As a parent that has to watch their child deteriorate in front of their eyes, I can assure you that there are no words to accurately express that level of pain.

Gavin’s been really beginning to struggle once again. 

His memory is essentially nonexistent and it’s absolutely impacting his daily life.  He’s never been the proud owner of any form of commonsense but he’s approaching uncharted waters, even for him. 

Lizze and I are seeing less and less of the 14 year old Gavin and more and more of the 3 or 4 year old Gavin. 

We’re having to work increasingly more on completing even simple tasks.  Right now, 1 or 2 step tasks are taking several attempts to complete properly. 

I wish that I could climb inside Gavin’s head and learn more about what he’s experiencing. He’s not ever really been able to tell us what’s going on or even how he’s feeling.  He’s very, very verbal but that alone doesn’t always translate into useful information. 

Gavin struggles with the boundaries between real life and the imaginary.  He’ll suffer in silience with chest pain but completely lose it over a paper cut. 

I’m realizing that we really have to make a concerted effort to take advantage of whatever time we have with him.  Truthfully, as crushing as it is to even allow these thoughts to enter my mind, neither Lizze nor myself feel like Gavin’s future is very bright. 

We’ve done everything even possibly conceivable, to help him in every possible way and for 10 years we’ve been coming up empty. 

Today’s been a really tough one for me personally because Gavin’s been struggling today and while it’s not his fault, it’s still frustrating, overwhelming and exhausting.

Hopefully, tomorrow will be a better day…..

This site is managed almost exclusively from my Samsung Galaxy Note 3. Please forgive any typos as auto-correct HATES me. 😉

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rmagliozzi

I am so sorry. That is so heartbreaking! Have you considered taking him to Duke University’s hospital? They have experience dealing with extremely complex health and neurological situations like this and may be able to get to the bottom of it. I know a family who’s daughter was having extreme behavioral and neurological issues and went there. They discovered she was positive for lyme, brain autoimmunity, and had inflammation in the blood vessels of her brain. She’s under treatment right now. They even did a brain biopsy to get to the bottom of it all. It might be worth a try.

Shirley Stavedahl

be Strong for gavin and faithful for all the rest..

upliftingfam

I am so sorry. Are the doctors concerned with his regression? It is so hard to watch anyone that you love go downhill especially a child who has a full life ahead of them.

Janet Meliti

Sure is true very good example.

Joanne Millan

Oh Rob my heart aches and breaks for Gavin, Lizze and you…we are with you in the air around you just breath in the strength we all send to you every day. Jo & Jack

María Lorena Polinesi

Tonnes of love and hugs ,for you and your family

Avia Batya

::hugs:

BeckyRogersWiren

I’m so sorry Rob. My younger son, the one who has fibromyalgia and NOT autism, has caused me heartache. But I don’t see him deteriorating like your son. My son’s deterioration is that he will not live a normal life, but it may be long. That has made me very sad at times. But although he short term memory is impaired from ADHD and fibro fog, he has a personality and intelligence. He is a good person and I can take comfort in many things. So when you talk about Gavin I feel so sad for you. I hope you can enjoy him, and enjoy loving him. I wish I could lift your burden away! God bless you. :'(

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