Above: Laura Escayg. Photo by Mark Lyndersay, make-up by Shenelle Escayg.
I’m exhausted but I’m in good spirits. Each year at this time, since the girls were born, Isaiah goes into a very unhappy place. My friend Carey suggested that it could be because they are at home and my time has to be shared. Whatever it is, means that he hardly eats, refuses to voluntarily leave the bedroom, self injures a lot sometimes until he is bloody and does not sleep at night.
I can handle all of it and remain cheerful but admittedly, the lack of sleep takes its toll. For example, his sleep time ranges anywhere from 2am to 4am and on Saturday night there was no sleep at all until around 11:30 am on Sunday. Yesterday I fell asleep at 6:15am because that was when he finally fell asleep.
A friend whose son turned 33 or 34 yesterday sent me some photos of her son who is severely disabled and their family’s celebration. I am yet to meet him but as I looked at his photos it evoked thoughts of what Isaiah’s existence will probably look like in 15 more years, if he lives to the age of 30 and suddenly, I wept and wept and wept.
I think I wept because for a moment I thought about all of the things that I know Isaiah will not experience and on the flip side I thought about his vulnerability in this cruel and unkind world filled with good people but also filled with terrible people who see him as less than.
Many people often tell me how strong they think I am and yes, I am strong because the experience of mothering a child with complex disabilities is no walk in the park. You start off dealing with a tremendous amount of inner confusion and grief before arriving at the essence of your child’s presence and purpose, which of course, can lead to the revelation of your own purpose.
Don’t get me wrong, every day, and I do mean this, I wake up happy and grateful. Grateful for my family, grateful for my purpose and for every single experience in my life, because there is always something to grow through as we journey through this realm to discover our higher “self” but yes, from time to time, once in a while I see another person’s child, a reflection of my own son and in my humanness, I weep.
So to my friends and acquaintances who ask me how come I am so strong and ask me if I was always like “this”? No, I wasn’t always this version of myself, it took time, it took work, it required a great deal of submission to the God source’s call to accept and persevere and most importantly I decided that my willingness to serve is the most important gift I could ever bestow upon my beautiful Isaiah.
Remember, it is in the darkest of places where transformation takes place.
If you have been trying to reach me and can’t or I promised to call you back and I haven’t, forgive me, it’s not on purpose. My time is being monopolised by Isaiah. Whenever he settles, I will get back to you.