Matthew Darren Sarber
From Holoprosencephaly
Matthew Darren Sarber
Matthew is a sweet and silly little boy who is diagnosed with Hydrocephalus and MIHV, a form of Holoprosencephaly.
Prior to his VP shunt placement at 3 days old, he was diagnosed with Alobar HPE. After the shunt, his diagnosis changed a couple more times (as the fluid drained there was a clearer picture of how his brain was actually formed). Finally at the age of 5, he was properly assessed and diagnosed with MIHV-HPE.
Recently he celebrated his 7th birthday, which of course was an emotional day for us.
It's hard to believe that years have passed since the day he was born. I'll never forget the days and weeks afterward when I was told repeatedly that he wouldn't live to be 4 months old and if he did survive, he wouldn't be anything but a vegetable. Needless to say, I spent most of his early life saturated with anxiety.
After Matthew turned 2, I left my isolation and began educating myself. I found professionals who specialized in treating HPE and others who were living parallel lives with their children who had HPE. After gaining knowledge from the experts and support from other parents, I felt like I could breathe again. My perspective on Matthew, my life and our future changed. I stopped living everyday with fear and despair. I have realized that no one can predict what will happen tomorrow and I no longer allow uninvested and unconcerned individuals to manage my hope.
I'm not saying that I expect Matthew will ever be normal or that he will live to be an old man. He does have serious disabilities that affect his life and sometimes cause him discomfort.
What I am saying is that I am focused on enjoying today with the beautiful, healthy child in front of me now who loves to laugh, finger-paint, swing, watch TV, listen to his MP3 player and sleep in papaw's arms; who can identify colors, animals and makes choices about the things he wants to do next; and pouts shamelessly when things aren't quite going his way.
I am so thankful for every morning that I am greeted by his sweet smile and outstretched arms. I have learned to appreciate my own life in a deeper, more meaningful way by loving him and observing the way he lives his life. He is amused by the simplest things, he laughs at the most subtle jest and seems so grateful for every comfort that he is provided. Amazingly, in spite of his many disabilities, he seems to have achieved a level of peace and stability that many of us, with all our mental components intact, have been unable to acquire......what an accomplishment.
We love our little Matthew with all of our hearts and no matter what the future holds, we aren't going to waste one minute of our time wishing that we could live without HPE, for the moment we are enjoying living with it.
The name Matthew means "gift from God". Everyday I am grateful for my wonderful, special gift.
