Grief beyond imagination – Realizing that I will most likely outlive my son

Lizze and I had a really, really painful conversation yesterday.  In all the years we’ve been fighting for Gavin, we’ve never really sat down and talked about his mortality.

I took her to lunch and we somehow got on the subject of Gavin’s continued decline.

For the very first time, we were openly discussing what we anticipate Gavin’s future will bring him.  I don’t know why we’ve never talked about this before because it’s staring us in the face, every single day. 

I think the truth of the matter is that it’s simply too painful and in a weird way, talking about it makes it real.  If we don’t talk about this, it’s like that thing that may happen to someone else but not to us, not to our son.

Lizze and I had never shared with other, what our biggest fear is about Gavin.  We’ve never spoken about what we truly fear is barreling down the road in our direction.

For the very first time, Lizze and I admitted to each other that we believe we are going to outlive our son. We both have that overwhelming feeling of impending doom when it comes to Gavin and his health. 

I can’t even begin to explain how excruciatingly painful it is to actually allow these thoughts to enter our minds. 

Today I found Lizze standing in the living room clutching this picture of Gavin.  She had tears in her eyes and the only thing I could think to say was I know. I know exactly what she’s thinking and I can feel her pain from across the room. 


I know that pain all to well. 

Looking at this picture as I’m writing this, makes me feel an overwhelming, uncontrollable sense of absolute grief.  I remember when this picture was taken.  I don’t remember the date but the I do remember the period of time when Gavin’s health was perfect and all we had to do was deal with the behavioral problems.

I remember how much Gavin loved that hat.  He got it on one the our summer trips to the zoo. 

He probably doesn’t even remember that hat anymore and that makes me sad. 

This is one of my favorite pictures of Gavin because he’s so happy and carefree.  His smile is so warm and inviting. Anymore, this particular smile is on the same endangered species list and many of the animals he loved to see at the zoo. 

I’m looking at this picture and find myself having to wipe the tears off of my phone screen as I’m etching my thoughts into my little corner of the Internet. 

In the morning we begin a new journey. 

This journey will have us treating Gavin’s primary immunodeficiency at home, every Friday for the rest of his life. 

There was nothing on the map of life, that indicated that we would have to change gears in such a significant way. However, Gavin’s health is to a point where he simply wasn’t tolerating the drive to the hospital every month for his IVIG infusion. 

I’m not sure where we go from here.  I’m absolutely terrified of what the future holds in store for my oldest son. 

The one thing I do know is that we need to take advantage of whatever time we do have.  God willing, it’s many, many, many years. 

The other thing I learned is that Lizze and I need to be more open and honest with each other when it comes to this.  While we think we are protecting each other, all we’re doing is isolating ourselves from each other.

I don’t know much but I do know that this journey is going to be very painful, joyous, scary, hopeful and hopeless.  The outcome of this journey, will be forever tatooed on our souls.

I don’t believe that the future is predetermined. As such, Lizze and I will continue to fight for anything and everything that Gavin needs to live his life (however long that may be) as happy and healthy as humanly possible. 

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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Rob Gorski

Full time, work from home single Dad to my 3 amazing boys. Oh...and creator fo this blog. :-)
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Cassandra Stone Boland

Praying for your amazing family. I wish I could do something. Please know the Bolands are here!

Lena Finley

Hugs and prayers!

Allyson L. Genthner-Thiessen



You said something about Gavin probably not remembering the hat in the pic or what was going on which made me remember that my son said yesterday while we went to try to the dr to get his ivig that he didnt remember a lot about his leukemia and bone marrow transplant. he remembers some but not most. to me it is a great thing as there were so many terrible/horrible/terrible ptsd inducing things to remember and i remember them all and am so glad he doesnt. he seemed concerned that he couldnt remember but i let him know that is what happens when you get older, you don’t recall a bunch of stuff from when he was younger. one thing that really bothers me and i am not sure how to address is that he doesnt know what not being sick or being well is. He doesnt know if a bad headache is the same as everyone can get or if it is different, he doesnt know that if he is on the toliet having a bad episode that “regular” people have bad episodes on the toliet once in a while that are bad enough to make you cry or want to scream out in pain. It is scary to me that he doesnt know and I don’t physically feel what he feels so I don’t know if it is worse than a regular person or what. he got his pneumonia shot yesterday and the dr said that his upper arm might be red and that it may/probabaly will be painful for a couple of days or he may have no reaction at all. of course it hurt so bad he couldnt move it today (he is much better now) but I was glad when I looked it up on the internet and a lot of people have the pneumonia shot and have terrible arm pain for a few days etc. I was glad to show him (not that I want others to suffer at all) that the pain he was experiencing was regular terrible pain. I hope it made him feel better i will ask him in a couple of days. if he is hurting he really doesnt want to talk. I understand that.


Never forget that you and Lizzie are a team. A team that doessnt communicate both the good and the bad doesnt function well. Keep the lines open between you. Hope is a good thing and Gavin is in good hands with parents who are as caaring as you both.

MeLani Soli Maysenhalder

Thank you for writing about this. I feel like I know your family. We deal with similar issues; chronic illnesses, being mostly homebound, pain, guilt, autism, and unexpected events. Keeping your family in my thoughts … wishing the best for Gavin.


God bless you all! :'(

Rachel Clark Zook

It is so hard to admit to our loved ones our biggest fear, even though doing so will make you feel not so alone. Praying for your family as you start this new journey.