THE LIGHT THAT NEVER GOES OUT***
By Author- Alisha Prien
Last week some home truths were heard. Spencer had some breakthrough seizures which came in clusters and ended up with him in the hospital. These seizures were very different to his usual ones. This time around he decided to hold his breath and turn blue, which to myself, the kids and Mel was quite confronting to witness. I dealt with it as I normally would, pushing aside the fear and taking immediate action.
Like many ‘avoidance prone individuals’ I chose to use humour to lighten the mood and hide my true feelings (fearing for my son’s life). I’ve used this type of humour and positivity many times in the past to cope with Spencer’s disability and his health issues. In part I think I’ve been in denial on a lot of things regarding Spencer, blocking out all thoughts of negativity surrounding my son’s health and his future.
It was last week that I came to the realisation that I hadn’t been real on a lot of things regarding my son’s disability and his health. During our hospital stay, I finally conjured up the courage to ask Spencer’s Paediatric doctor for the first time, a question I had long since avoided. I asked her “what the future looks like for a child such as Spencer, in terms of his health and lifespan”. This question came with an already unconscious knowing that it wasn’t going to be the answer I wanted to hear.
Basically, Spencer has severe Cerebral Pasly level 5 (he cannot bear weight, he cannot eat normal, he is at risk of aspiration, hip surgeries, scoliosis, and overtime these things can accumulate and affect his ability to live a long life. Deep down I already knew the answer, I think I just didn’t want to admit it (that my son would one day not be here, and his life could end before mine). Such thoughts for a parent are always daunting.
I’m sure many of you are wondering ‘well how do you not constantly worry and grieve?’ the truth is; You never stop worrying or grieving these types of possibilities, Its always there. We Just have to keep living. Spencer is going to have different obstacles for us to overcome in life, he is going to bring about challenges for our family, but that doesn’t mean we have to stop living, stay inside and be forever cautious, “what kind of life would that be?” a miserable one…
Spencer just celebrated his 5th birthday this week… Those 5 years flew by!
During these 5 years, Spencer has impacted me in ways I never thought possible. I find myself tearing up just writing this as its hard to put into words how grateful I am for him, and just how much I love that little guy. There are things I no longer worry about that I use to; all the superficial stuff, the drama of others, the anxiety of fitting in or missing out on social gatherings. Spencer saved me from a toxic relationship and awoke me to the strongest and greatest version of myself. I am a better mother because of him, a better partner and a better person in general than I was before he came into my life. Spencer has brought so much love, and so much purpose, he has made many see life in a whole new light, including myself.
Spencer’s joy touches everyone he meets. Theres a light that awakens in each person who meets him, as if touching their souls. If it wasn’t for Spencer, I don’t think I would be half the woman and mother I am today. So, I choose to continue living and enjoying life because of him. The reality is, you never really stop grieving the ‘what ifs’ with these children, but you also don’t have to let that stop you from living the best life possible, and giving these special guys the best life that they deserve. If Spencer is only here for a short time, then I will make it the best time…