Life, Mom and Wife

What? Where did those 27 years go?

Okay, so maybe we were young, foolish and crazy in love just like every other newly engaged couple dreaming of forever, but in all honestly there was absolutely no way to even expect or prepare for the very crazy, difficult, mostly nobody has even any idea about life we have had since the arrival of our son almost 12 years ago a couple months prior to our 15th wedding anniversary. Hindsight is 20/20 and all the medical issues he has had can be completely explained by Duchenne, problem is we never even heard about DMD until he was four years, seven months and nine days old. Now imagine this four year journey, I do not know what is wrong with your son but it just does not make sense that he is not gaining any weight if you actually are feeding him like you say; I’ll let you take him home today but if he does not gain at least x ounces by next appointment I will have to admit him so nurses record his intake and output; oh I guess he is just a little guy, I am no longer concerned since he reached 12 months; oh toe walking is completely normal and he will outgrow that; he is just regressing because there is a new baby in the house; you are just used to girls, boys are different, all the frequent falls and bruises are normal; he does seem to be quite delayed for his age; his liver enzymes indicate he has a fatal muscle wasting condition; he is more progressed with muscular dystrophy than a child 2-3 years older than him. I can not think of anything more completely life altering than living with the knowledge that because of a rare genetic mutation in your DNA you are going to outlive your child. Yes, life does completely (fill in with the word of your choice) but I guess it sure does beat the alternative, being six feet under. #DMDmom