Very rarely do I focus on sadness or show any signs of weakness. But, today, I had a hard time catching my breath as a moment of complete heartbreak came over me.
Even though Kieran hasn’t had food or water by mouth in nearly two years, we remain committed to following the techniques advised by his medical team as to what they believe is the most optimal approach for aiding success in achieving whatever HIS maximum potential may be.
To that end, we sit together for dinner nightly so we can socialize, discuss the happenings of each of our days, etc. Kieran gets a plate, cup, and utensils so that he can be included in the “social and developmental” aspect of meal time… just like any other member of a “normal” family.
It was so beautiful outside this evening that I took the babes out on the back deck to eat dinner. Noli talked about her day at school and then I turned to Kieran encouraging him to interact with us. Despite his cognitive limitations and speech delay, he has made incredible progress — proof being in how he responded tonight. He locked eyes with me and softly uttered, “Mommy, I want food.”
My heart shattered and it took everything I had to keep myself together in front of the kids. I tried to wipe away tears and find words to explain to Kieran why he doesn’t get to eat like the rest of us. Understandably, he didn’t comprehend and just kept saying, “Give food; Want dinner; Plate empty.”
That was an incredibly hard moment for me, as a mother… especially knowing this will only become harder as he [God willing] gets older. He will be faced with environments/situations where there will inevitably be people who don’t/won’t/can’t understand his “special” way of life.
I am strong. I love my children fiercely. And, I wouldn’t trade my precious babies — as they are — for ANYTHING in the world. Nonetheless, having a child that is unable to breathe on his own, who cannot eat or drink, and who faces monumental struggles even imagining the idea of what it’s like for the ‘normal’ life most others take for granted… well, it’s devastating on days like today when reality comes and slaps us in the face.
I know there is something to learn — and focus on — stemming from today’s experience. Kieran is here; Kieran is one-of-a-kind; and Kieran is loved like no other.
This is why we “Thadvocate” in his honor.
We love you, Chappy.