It will never be his last smile, the Ebb and Flow of a Childs Terminal Illness


I hate you, I wish you weren’t here, it’s your fault mom is sick, it’s your fault dad left us . Those are the words out of my 6 year old grandson’s mouth to his 3 year old brother who has been diagnosed with a terminal illness  called Duchenne Muscular Dystrophy. These are the words I hear as we play outside in the yard, trying to make sure our youngest is included in all we do and our oldest is  loosing patience. As he also has a behavior disorder and is short on temperament.

As these words tear through my soul, I try to let our oldest know in the kindest of words that his brother is ill, he pays no mind, at this age the cut is either so deep or the mind does not fathom that he doesn’t even acknowledge. I’m not sure which I want to believe more. I want them both to love and take care of each other, however right now it’s easier to blame one than to know the truth.

Our oldest is so out of sorts that he hurts his brother and continually lashes out at his younger brother hitting him, choking him or kicking him in the head or body telling him he’s stupid and that he hates him. Both myself and my daughter (their mother) are horrified by this behavior, whatever we try has no recourse. Doctors, therapy or meds. The abuse continues.

My girl, a single parent with two boys with special needs and her own serious health disorders trying to make heads or tails out of this tragic mess is almost driven to her own breaking point, her only saving grace being family, support groups and her care giver keeping her sane.

My husband and I at our own wits end at what we can do to help, do we separate them, do we bring our oldest here with us and leave our youngest with our daughter to take care of? what can we do, we’ve now been through multiple councilors, doctors and therapists, meds, naturopaths what is left for us to do?

Over those last couple years we did everything we could, we would take the oldest on the weekends to leave our daughter with our youngest, then we would switch. Well come to find out it just takes time, patience, much love and maturity along with doctors and therapists.

The boys are now 5 and 8, and as we just found out our youngest is worse off than we imagined. He turns 5 tomorrow 11/26 and as of his appointment at children’s hospital last week his condition is worse than we ever could imagine at this point in his life. You see kids with this disease usually live from 17 to 25 years old, we just found out that our little 5 year old has a heart disorder  that they usually don’t even begin to see in boys until ages 10 to 12 years old. They asked my daughter if she would be willing to let them use the data from his test to help other children, of course her answer was yes, and when the doctor says, I’m going to leave the room to let you get your thoughts together and says “I’m so sorry” well you can gather what that means. So there is a heart med that may be a possibility for him to take. however we will not know now for a week if it’s something he can actually take until his blood work comes back.

So the difference in age and circumstance between brothers at this point growing up together and the oldest seeing the youngest slowing down, not able to speak much, not able to run and catch up or being so tried he wants his wheelchair rather than walking are tears, confusion and the unknown. He now see’s his brother in his wheelchair and knowing his pain and difference from other kids his age has struck home. He walks slower with him, he holds his hand, he walks with his hand on his chair, he pushes him, he plays with him, he protects him, he loves him, he hates when he has to go to the doctors and they poke his brother, he yells at them not to hurt him, he cries in anguish at his brothers pain, he’s patient most of the time, he’s loving and  he’s kind.

Watching this from afar as a  grandma hurts my heart so bad seeing all this and knowing the outcome, and only praying for miracles and not even being their momma is beyond comprehension.

How do you deal with these type of issue of life and potential loss, how do you keep believing and pushing on in life when the things you love most are ripped from you…..  Don’t ever tell me it’s his last smile as this little boy will fall down a hundred times and get right back up with his huge smile. He will run himself ragged for 10 minutes then curl up and snuggle with you for an hour cause he’s tired, he will run with the kids as they leave him so far behind and not give up cause he can, and you will never here him say, “wait for me” he, his momma and his brother are the only ones who know his true pain, and not because he says he hurts, but from total exhaustion and the look of despair in his eyes.

God Bless the Children and Selflessly my grandson who I would give my own life for if it would heal him.

I love you little man, more than life itself.







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