Confessions of a Special Needs #Dad: The pain of losing my son

Confessions of a Special Needs #Dad: The pain of losing my son

This is one of those posts where I confess a parenting fail or simply share my personal feelings about something. 

I’m going to confess something that I just realized and Lizze pointed it to me as well.  This isn’t easy for me to admit and I don’t know for sure why this is happening, but it is. 

The Problem

It occurred to me last night that I’m distancing myself from Gavin.  I hadn’t said anything to Lizze but she’s noticed and pointed it out to me this morning. The truth is, this has probably been going on for a little while. 

I always try to go out of my way to be positive with Gavin because I’ve already lost him once and I live with regrets, each and every day of my life.

A little background goes a long way

For those wondering what I’m mean by already lost him once, let me explain. 

Gavin and I were inseparable from the day I first met him.  He was about 13 months old and essentially had no male influence in his life and I immediately filled the role.  Gavin was so happy and engaged.  He loved hanging out, playing at the park and going fishing.  I used to even take him to the Fire Station and let him climb around the fire trucks. 

One day, after coming off of a 72 hour shift, I took Gavin to the park and we went fishing. 

After a few hours, I wanted to pack us up and go home. I had been working the ambulance for 3 days straight and I had to go to bed.  Gavin begged me to let him play on the playground but I was too tired and didn’t feel up to it. 


If I had it to do over again, I would have let him play forever. 

Shortly after that, it was like we put him to bed Gavin and he woke up someone else.  Everything about him was different and nothing of who he was remained. 

It was literally like we lost him…. All that remained was a shell of the person we had known and loved for 3 or 4 years.

I’ve never stopped grieving and every day I’m filled with guilt for not letting him play on the playground.  From that point on, both his mental and physical health began to decline until we have what we have today. 

What kind of father distances himself from his son?

As Gavin’s health continues to decline and he cognitively regresses further, I think that I’m subconsciously trying to protect myself from the pain of losing him again.

This isn’t something that I’m willfully doing. I’m not getting up every morning and saying to myself, let’s see how I can distance myself from Gavin today.

I think that I know that I’m terrified of what’s happening to Gavin.  As I’m writing this, I have tears in my eyes and I feel sick to my stomach. I try so hard not to even let the thought of what I fear most, creep into my heart. I guess a side effect of that is me creating distance between Gavin and I, without even realizing it. 

What I know for sure and can tell you with absolute certainty, is that I don’t think I could survive the pain of losing him again. 

A large part of me honestly feels like that’s the direction we’re heading in. 

I think that I probably need to better embrace these feelings of fear because not dealing with it may inadvertently lead to me missing out on whatever time we do have left with Gavin.

If there was an ironic silver lining, it would be that due to Gavin’s condition, he’s likely not noticed any of this.  That means that I don’t necessarily have to address anything with him, which would bring this to his attention. What I need to do is focus on being more self-aware. I need to make sure that I don’t allow my fear and pain to impact my relationship with Gavin now. 

This isn’t easy for me to admit to myself, let alone the rest of the world. 

That being said, it’s important that people understand some of what parents with very special children can go through.  This is something that I may need to get some help with.

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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Gilda M Sanchez

Give yourself some credit that you have been a devoted father to Gavin since you met him. I’ve felt this pain too of “losing the child” that was once there. It is always hard. It is okay to cry-God knows I’ve had to many times. The way I cope is to think of all the positive and unique things that my son does. Bring the positive qualities out whenever you are with him. 🙂

Lost and Tired

I’m gonna thank you anyway. 😉

Jessi Lynn Small

Don’t Thank Us, your a huge reason so many Parents can squeeze some comfort into our lives, and continue to thrive for our children.

Lost and Tired

Thanks everyone. I really appreciate your kind words.

Nancy Ragusa

This is just another reason why you and your family are always in our hearts. Believe it or not, you and Lizzie are very inspiring people. Gavin and the 2 E’s are so very lucky to have you both.

Cara Thompson

Beautiful and honest.

Jessi Lynn Small

That was beautifully written and deep in thought and feeling. I too have similar feelings with my Children at times

Jana Rothmar

I had a “normal” boy until he was 4. Except for him not sleeping & having terrible tantrums.
Then one day the seizures started. He almost died 3 times during that first hospitalization. When he came out, he was different, not just because of the seizures & medication, but because of a rare form of Autism called CDD (tho now it’s considered separate from Autism, it has similar behaviors), which had begun to rear it’s ugly head. I consider that the time I lost my son. I grieved his loss, still do.
I love the 16 year old boy who is, but isn’t my son. 2 years ago, again he almost died 3 times. I had started to accept it, & also distance myself, so it wouldn’t hurt as bad. I think I had been doing that for the past 10-12 years. But this time he was the same as he has been since the first hospitalization.
I know your pain. CDD is a degenerative disease. Every year he loses abilities. His health is constantly up & down.
Know that you are not alone, others are where you are, feel what you’re going through

Rose Morrissey Barron


Sarah Doreen

some more food for thought…what if you had stayed at the playground, but were so tired you had an accident on the way home? How different could your story be now.?.? As parents, its important to know our limitations and you knew you couldnt handle any more that. It may haunt you still, and easier said than done i know but try not to let this keep eating you! Youre a good dad who loves his boys and theres nothing more special than that!

Kristine Lackner-All

Rob, although not exactly your case, I have done some of the same. More than once. And it was fairly recent. Different kids, parents, and reasons of course. But, I find myself doing it when I am overloaded. Either with just stress in general, one of their behaviors, or issues of my own. As parents we all have regrets. Times we wish we could go back and get a “do over”. I once actually told myself that I didn’t want to be their mom any more. That it was just too much. That maybe I should send them to foster care. Maybe they could have a better life. It’s happened more than once. But, if you knew me personally, you’d know that I really never meant it. I live and breathe for my boys. They are what keeps me going. But, I have a question for you… What do you think would have changed (if anything) had you let him play 10 min..20..30 min more? You did nothing to cause the change. Your love for your son never changed. It’s coincidence. It’s all timing. I do feel you are trying to keep a gentle distance to guard your own heart. Rightfully so. Your feelings are valid. I also read your posts/blogs often. You’re a wonderful loving dad. You give them your all, and you go to extremes to do your very best. If counseling may help, then try it (I am just starting that road finally). But please know, you just reaching out to anyone who will listen and saying what you said, that shows your true and wonderful heart. I’m here to talk ever if you need me. Not sure I’m good at advice, but I’m definitely a good listener. I’m single handedly raising 2 different parts of the spectrum all on my own. Take a breath. We’ll all help you through this.

Donna Loychik

I’m so sorry for this horrible ordeal you and your family must face. Although this is not in any way as severe as what you are facing, I do want to share that I know that feeling of distancing. I did this right before and after Kevin was diagnosed. It must have been a coping mechanisim of some sort…but in short to me it was too difficult and hurt too too much to me to even look at him at times. I went and got help, counseling, medication and my senses returned. It is usually very very sensitive people who do this I believe. Now my veiw is so differant…I am thakful for all the people in my life who have meant so much to me…for however long I have with them I cherish it. I’ll grieve later now…when the loss is just and prayers to you and yours.

Sarah Doreen

how scary this must be. thinking of you


Oh, boy. I just want to wrap my arms around your entire family. Be gentle with yourself.


Others have said it but a little more saying couldn’t hurt,  it takes a lot of strength to be be this honest.  You deal with some seriously hard core issues ever day, if you didn’t have some fear( and unconscious self preservation) I would be very afraid for you and your family.  You have one of the biggest warmest hearts I have ever heard of.  That’s why you hurt, fear, and why your mind tries to protect you.  Of course you don’t wake up and say, “How do I distance myself today?”.  You get up and do every blessed thing in your power( and sometimes well beyond) to make your family as happy, safe, and well cared for as possible.  It’s why people flock to your site, not to be voyeurs, but to support that kind of heart and effort, to see something good happen, even when it takes a long time.  We will wait, cheer, cry, and follow.  We bring hugs glue and duct tape.  Also love.  Don’t feel alone.  As much as it hurts try to savor each day, as pithy as it sounds, as if tomorrow will not happen. Because you never know–no one does.  We will be here to help when we can.


Lost and Tired Rob, I am sorry I am so not computer literate but I dont know what you mean “can you post a link to your post?” if you want you can email me at which is my email. I dont mind it being on here cause my email address is out in the world. But if you can tell me what that means I will try LOL

Stella Maris Lauria

So touched! Thanks to share. I believe si better inconditional Love than moderate Love! Cry a rive that never will dry. You aré full of infinito Love ! Remember!

LaTonya Banks

Yur very brave for posting this.. Hang in there.. He’s so lucky to have u in his life and as long as u remember tht everything else will fall into place … Thy for sharing

Carrollynn Henshaw

I am sorry! Parenting with your whole heart sure makes us vulnerable.

Lynn Saum

I am so so sorry


It takes a lot to be this raw. Thank you. This really means so much more than you know, as I feel like I have gone into that direction a few times, and I am glad to know that I am not alone. And that it is not intentional by any means. So, thank you.

Lost and Tired

Meaghan1985 Deborah2013 rjones22 thanks everyone.  I really appreciate.  rjones22 can you post a link to your post?  🙂


You are overwhelmed with everything. Fear is an awful thing. You are saying things that a lot of people think but dont say. I fear walking in my son’s room every morning because I need to make sure he is just asleep and still breathing for real. that is trauma to the mind on a daily basis. You are having trauma to your mind on a daily basis. You know me by now, my standard answer (because I am a fixer like you) get you some personal therapy, make sure you are on the right dose of anti depressent, get something that wont knock you out for anxiety (if you have it tell them it isnt working and to up it), I dont know if you had to get your back checked out again, you know pain will make you mind think stuff more vividly, make sure you are walking if you can since you know it helps, and again, once the boys are off to school TAKE A NAP. I am so sorry you are feeling this way. I don’t know if you saw my positivity list I started the other day (because of you and your blog) with 10 things on it. I don’t know if it is helping me yet as I am doing it daily, but when you can put on the list something like “we are able to have enough to eat this month” that is an accomplishment. You have other big stuff you do with the blog(s) and the computer stuff I dont understand (dont need to as my mind cant take it) you have a big list of positives. dont start a list of the negative though. and as you know you can disregard any of this and i am good with it. just my 2 cents hoping praying for the best for you and your family


I admire your transparency.


Thank you once again for your fearlessness and honesty.

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