didn’t matter, some live longer than others and no one could tell me how long that would be.
Last year I took him to the Build A Bear store in the mall, and together, we built us (me) a teddy bear. If you don’t have a store like this, you go in, pick out your stuffed animal, a music box if you like and a little red heart to put inside your bear. The red heart you hold in your hands, give it a kiss and then it goes inside the bear. You get to decide how soft or firm you want your bear, then you give him a bath, get his birth certificate and take him home.
I did not know that when we built this bear last year, he would be gone this year, I feared that would be the case but since that fear has been realized I’m glad we had that experience.
The day that I dreaded for two and half years ago has come and gone and I find myself still picking up the pieces of my heart. We watched him over that time, slowly slip away and that was terribly painful. Grieving over all the things we would never have, all the things he would never do, that list is so long, but nothing was as painful as watching him take his last breath. It’s been five months now and I didn’t know how I would survive; the pain in my heart was so severe that I didn’t think it could continue to beat, yet here I am five months later, without him. The sun continues to rise and to set every day and there is not one moment that I am not thinking about him. My arms often times feel so empty and they long to feel the weight of him and it goes without saying that I miss him so much!
In our special community we often times talk about which day is worse, I can’t say that one day was harder than the other, they were both very painful and, grief is grief. I still think about all the things that we lost after diagnosis but now, coupled with those losses comes the physical loss of his body, the finality of all of those losses. Is it harder to watch your child slowly die, or is it harder not being able to hold him? Is it more difficult wondering if today is his last day with you or is it harder knowing your last day was five months ago? I don’t know how to answer these questions because they are both unfathomable yet for me they are very real.
Kaleb was “gone” long before his body quit working, but his soul was so beautiful and it drew love from every person who laid their eyes upon him. If love were more than just an emotion you can feel, if it were something you could touch, it would have been Kaleb. You couldn’t help but instantly love him and who he was, even though for all intents and purposes he could “do” nothing. He couldn’t look at you, but you couldn’t not look at him, he couldn’t talk to you but you couldn’t help talking to him, he couldn’t say “I love you” but you couldn’t be in his presence and not feel love. Kaleb demanded nothing from anyone, he didn’t know any better, but Kaleb was love in the purist of
forms. He taught me more about life in his four short years than I had learned on my own in 40 plus years.
I thought being a deputy showed me a lot about life, honestly it just showed me a lot of the bad things about life.
I had stopped believing there were good people in this world, but Kaleb showed me the opposite. The kindness of strangers during this time has been amazing and although I honestly could have spent the rest of my life in blissful ignorance to Sandhoff’s Disease, he introduced me to a world of loving, kind and compassionate people that were truly instrumental in helping us care for him and ourselves. The lessons that Kaleb taught me came with a price but I am so grateful for the opportunity to love him and learn from him. In our role as parents, we are supposed to be the teachers, but in our case, Kaleb taught us.
His body is now gone from this world, I cannot hold him, see him or touch him, I don’t remember and cannot find his “smell” anywhere in the house but I will never forget how he felt in my arms. I will never forget that for a brief
moment, I held an Angel in my arms.
Grief is the price we pay for love ~ unknown