The Inevitable

As my son's 3rd birthday rapidly approaches, I feel myself getting that uneasy anticipation that I experience with each of his birthdays.  I want nothing more than to plan a big party with decorations, cake, his favorite foods and lots of presents, just like every parent imagines for their child's birthday celebration.  But behind each hope and plan I'd love to make, there is a lump in my throat and an ache in my heart.  We can do all of those traditional things, but to my desperation and sadness, I know that my son will not understand.  He will not admire the decorations or enjoy playing with the balloons like most children his age nor will he make a mess of his face and clothes with cake and frosting.  He does not have a favorite food and he will not open presents with an excited grin on his face.  All of these things will be purely for me and my husbands desires that he just might get it at last.  Just like all of the other holidays and special occasions; we decorate the house and buy our son outfits to match the occasion so we can take lots of pictures and savor the memories.  But in each of the photos, our son is distant and detached from what is going on around him; the decorations unnoticed and the outfits only another part of his daily routine.  The smiles we plaster on our faces as we hold our son close, are only optimism in the works.  We hold dear that our child understands more than we realize, but have yet to see the reality.  We have done everything we can to find answers, a diagnosis and treatment possibilities only to end in a place that leaves us just as confused and scared as we were without those conclusions.  Our son suffers from a rare metabolic disorder called Complex I Mitochondrial Disease.  The doctors cannot tell us what the long term looks like nor can they assure us that he will progress and live a somewhat typical life.  So, in our hopeful journey of what if's, we hope that by deciding on colors or themes for our son's 3rd birthday, that he will understand in his world, that we love him and will not give up.  We will live each day with the belief that he knows what we are saying to him, that he understands those 3 simple words we repeat to him hundreds of times a day; that he knows we are mom and dad.  My hopes for his third year consist of the same things from the last two.  I hope that he will learn to walk, talk, eat, and understand simple commands.  I hope that he will begin to acknowledge my husband and I as "mommy and daddy".  I hope that he will be able to acknowledge that he understands his fourth birthday.  I will never lose my will to hope.  I will keep fighting his fight and loving all that he is.  We love you, Carter!