Regrets: An honesty post

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I woke up this morning with the knowledge that it may be the last morning I wake up not knowing for sure where Emmett falls on the spectrum. It’s like a nightmare you can’t wake up from. I was putting Emmett to bed last night. I found myself asking him to fight. Actually, I was more begging him to fight. I begged him not to slip away and to please still be “there” in the morning. I think that’s what scares me the most. With Gavin we simply didn’t know what was about to happen. I have so many regrets. With Emmett I don’t want to make the same mistakes. I know the risks now and don’t want to take 1 sec for granted. I want this time to be filled with positive memories.

Autism is a bastard in the way it can work. I never know if today is the last time I will have my little Emmett John. Parents who lose a child to the rare regressive form of Autism will understand without me having to explain.

For those lucky enough to not know what it’s like I’ll try to explain. Imagine putting your son or daughter to bed one night. You read stories. They want you to read 5 but you only read 3 because your tired from a long day. Your son or daughter may ask again for you to read “just 2 more stories, please Daddy”. You kiss them good night, tell them you love them and walk out of the room. Your thinking “I’ll read 5 stories tomorrow night”.

You go to bed like usual and wake up just like you always do. Except this morning will change the rest of your life. You go to say good morning to child and something is different. You can’t put your finger on it but something is wrong. Your child is acting strange today and seems disconnected and lost. You brush it off as “their just tired” but its more then that. It’s like they don’t even see that your there. You start to notice things that are out of character for the child you have known since birth. Eventually it begins to feel like they are not even the same person. It literally feels like someone came in the middle of the night and “stole” everything “that made them,them”. Your left with an empty shell. Your child looks the same but their personality is different and they are disconnected from you in way that you have never experienced before. Then You realize you have woken up to a child that you don’t know. It’s a horrible and confusing feeling…..when you first realize this.  



This example is not that far fetched. You ask any parent that has experienced this and they will tell you “it’s like we put them to bed and when they woke up everything was different. It’s like someone came and took our child away and replaced them with someone that looks the same, but they’re not”.

Read This  Desperately Exhausted - The boys are going to their grandparents

Be grateful you can’t even imagine this. Because then the guilt kicks in. A guilt you have never known. “Why didn’t I just read 5 stories?”. You will ask yourself that question and carry that burden for the rest of your life. It seems silly, right? But the truth is that you would literally give your own life just for a chance to go back and read them those 5 stories. In fact you would read to them forever if only given the chance. This will be something you never forgive yourself for. No one will understand why you are so hard on yourself but they just don’t get it. That was the very last chance you had to spend time with your child when you were both in the same place at the same time. When you were connected and they knew you loved them.

I experience this regret every single second or every single minute of every single hour of every single day. It never goes away and I will never forgive myself. I just can’t bare the thought of that happening again. My heart can only be broken so many time before it just shatters.

I still spend every day with Gavin. I should be grateful he’s still alive, right? It seems like an easy answer but it isn’t. Everyday I live with the constant reminder of what I used to have. However, he is no longer there on the inside. In reality the Gavin I knew died when we was 4 years old. I mourn his loss every day and it often times feels like torture because I see what I can never have back. It’s like everything that made Gavin, Gavin died. However, his body stayed behind in some cruel twist of fate. Does that make sense? How do you ever heal from that type of loss. How do you ever move on when their physical body is still here but “they” are no longer with us. It’s torture. Pure and simple torture.

I truly hope you can learn from my experience. You don’t want this type of regret. Please don’t EVER take your child for granted. Read them their 5 stories at bedtime. Heck read them 10 stories. Remember that every day you have with your child is a blessing and could be taken away at any time. My point is not to spread fear but make you aware of what I have live with each and every day. I know I’m not alone. I pray you never have to experience any of these things but odds are some of you will. Please pray that I don’t have to experience these things again……..



  • Catherine says:

    Rob,
    It is the first time today I read your blog and I will read it often by now. As an aunt of a little autistic boy, I'm feeling very moved by what you write. I think it is very important to explain to the other people, especially the ones who are gifted with "no problems" children, what is to deal with autism every day. Because it's very difficult to imagine. And sharing it may change the way people look at autistic children or adults. It can change a lot in the life of these.

    Your three sons are extraordinary kids (and the extraordinary is never simple to cope with) and even "lost and tired", you and your wife are very strong.

    Regards,
    Catherine (sorry for my poor English, it is not my maternal language)

  • Sheri says:

    Ps. I forgot to tell you that I love how your honest, not alot of people can do that. Thankyou.

  • Sheri says:

    I read your blog daily and I can relate to the example you gave on Emmet John. My son had skills and slowly lost them and regressed. He was diagnossed at age 2 1/2. By age 3 we started all the speech and early intervention. He is now 5 in reg kindergaten with a part time aid. Yes he has good days and bad days, and you know yourself the bad days are BAD!!

    But I do say prayers for your family and the strenght you all have. I have to other sons age 2 and 1 so I am not in the total clear yet for the younger boys. I watch them everyday and evalute everything they do. Take care.

  • Rob,
    While I've read quite a bit of your blog; this post in particular broke my heart for you and your family. My wife is 36 weeks pregnant with our first child and while we are overjoyed with the hopes of the future we are also concerned about the possibilities and realities of the world we live in.
    I first found your site through your android development (thanks so much for that BTW); I find myself reading your daily blogs and coming here to just check up on how things are going for you. Even though I was brought up in a very religious home I don't consider myself a religious man. However, I do say a prayer for your family on a regular basis.
    My wife also went through the terrible migraines as your wife is going through now. Actually, I should say migraine as in one singular migraine. It lasted for over two years and we went to see every specialist that we could find. Insurance refused to pay for procedures and we had to fight them all along the way. Eventually, through some pretty intense in-patient therapy, things got better but I think we both still live under the fear that one day it might come back. It ruined our lives for two years and the strain almost ended our marriage. She went from being a professional in a field she loved to having a entry level job now that she hates. We're just starting to put the pieces of our lives back together.
    While I can't even compare what I've been through to what you've been through I just want you to know that there's hope for the future and that your blog is doing some good. Before reading your blog; my understanding of autism was very limited but know I feel I have a better understanding to what parents, like yourself, are going through.
    Please keep your head up and know that there are people out in the world that are thinking about you and your family and praying for all of you.

  • Athena says:

    Rob, I read all your posts. I've been reading your posts for sometime now and I've been praying for you and your family. I have so much respect for all of you and everything you all go through. The strength you and your family has is amazing. Your family inspires me. I do have to say though that this post has brought me to tears. It's such a terrible thought to think that such good people could have to be put through this torture and I'm sorry for that. I know nothing anyone can say will make this easier for you but I still want you to know that because of you and what you've gone through it's really helped me appreciate my son, my husband and my LIFE more. I'll continue to pray for you and your family and I want you to know I tell all my friends about "The Amazing Family" all the time and I tell them about some of your posts and even forward the links. You're helping a lot of people through this and changing lives. We all thank you for your honesty and pray that things will get better for you.