Updated: Jul 27
Today is a special day for our family. My parents most especially. Today is a day that honors and recognizes the disorder that affected my little brother, Jacob. If you have been following the blog for a while now, you know that my sisters and I have a little brother, who passed away just two weeks shy of his first birthday.
Our brother was born with several complications. My mom had a C-section at the time of my brother’s birth, and immediately, the doctor knew something was wrong, just by the amount of fluid surrounding him upon delivery. From the time of his birth, forward, my brother spent much of his existence at our renown, local children’s hospital. With bits-and-stretches of precious time at home with our family. Although I was only three-going-on-four, my memory is sprinkled with sweet recollections of our now-precious guardian angel.
~running around the hospital room area with my sisters when he was born. I remember the way the sun was shining in the room when visiting my mom.
~the times he was at home with us. The nurses visiting to do therapy on his clubbed feet, caring for his trachea and just spending time with our family. (It was noted that Jacob was a big flirt with the nurses!)
~him by the Christmas tree.
~my parents having to essentially keep him in a “bubble” at home, away from us girls at times, especially when we were sick. I remember the stress it caused my parents.
~how much my parents had to learn to care for him.
~that he loved bubbles.
~how much he studied everything around him.
~visiting him at the hospital on my fourth birthday to help give him a bath with my mom, and the nurses, just a few weeks before his passing.
~learning from my parents that he had passed away (from complications to pneumonia).
~riding in a limo to the cemetery.
~my mom putting a broom through the wall in our garage, as her emotions came to-a-head with the loss of a child. My heart can only imagine that pain and suffering.
My parents poured their heart-and-soul into this little being. He was a.m.a.z.i.n.g. In his eleven-and-a-half months on Earth, he touched more lives than most of us can dream of doing in a life time. I have no doubt in my mind that he is now up above, looking down on us, watching over us (with several other very special family members) and blessing us with his angelic presence when we need it the most. And wow, have we needed him, and wow, has he been the most incredible guardian angel this family could ever have.
Today is National Moebius Syndrome Awareness Day. The genetic, neurological condition that surrounded my brother and his handicaps during his time with us. But those disadvantages never defined him. Those disabilities were not what others remembered him by. In many ways, he was a pioneer in the charge to bring awareness of how a disability does not encompass a person’s identity. In fact, very little was known about this syndrome at the time, and Jacob and his story became a launching-point for local research.
So, if you have a few extra minutes today, or this weekend, I would be beyond grateful if you would take a minute to click the link above and learn something new about a disorder finding itself more-and-more in today’s spotlight. I have no doubt that our precious guardian angel would be more than honored for a moment of your time. <3