He Is Still Mine
It is difficult when people know you are grieving and then find out that you are devastated because the person you lost is your grand-nephew. Immediately you can see them look at you a little differently, as though you don't have the right to grieve so deeply for such a "distant" relative. It is hard to express to strangers and even family members that the pain you feel is that of a mother losing her child. Skyler was my child...even if only for a little while. And just as I will never stop thinking of my own biological children as my "babies", I will never stop thinking of Skyler as mine, too.
Skyler was removed from his mother (my niece) when he was 11 months old. He had already been diagnosed with Spinal Muscular Atrophy (SMA) type I. I knew that my niece was struggling with addiction for a while and had often said that the best thing for him would be for her to give him up. I also always said that I would be willing to take him. When the moment came, I was true to my word and opened my home and my heart to him. When he first came to live with me he had very little emotional attachment to anyone or anything....except his car seat. He would actually cry when I took him out of it, but that didn't stop me. I held him almost non-stop for the first week that he lived with me. After that, he cried when I put him in his car seat, but I would always assure him it was just for the car ride and I would get him out as soon as we reached our destination. In no time at all I saw this baby go from a withdrawn infant to a loving, smiling, happy baby. Caring for him wasn't easy as it required a lot of medical training and treatments every 4 hours, but it was so rewarding to watch him blossom and grow. To see his smile when he saw me and my daughters and to feel the love and joy he brought to our home. For six months he was "my" baby. I was responsible for providing for his every physical and emotional need. I sat by his hospital bed. I paced the waiting room during surgery to place a feeding tube. I broke down the first time he was intubated. I sang songs to him to lower his heart rate. I exercised his muscles. I held him and held him and held him some more. I told him a hundred times a day how very much I loved him. I was his mommy, though I would never say those words out loud to anyone else. I knew it was temporary. But in my heart he was mine.
Six months later, the courts returned him to his mother's care, but she was injured at the time and was unable to do his treatments, so she asked me if I would retain physical custody of him for the time being. When I offered for her to come and stay in my home with him, she "politely" turned down the offer. I dropped her and her boyfriend off at their apartment and went back home with "my" baby. She contacted us by phone every other day or so to check on him, but that was the extent of it.
About two months later she showed up at my front door with a black eye from Skyler's father. I opened my door to her as well and she moved in with me. During that time she began to assume more of the responsibility for Skyler and I watched her blossom into a loving relationship with her son. Though there were still many things that bothered me, I appreciated the fact that she was bonding with him. It became difficult for me to know my position. In my heart he was still mine.
They lived with me for about four more years, until my home could no longer accommodate his physical condition. They then moved in with my sister (his grandmother) for a short time before getting their own home. In my heart he was still mine.
When Skyler was first diagnosed with SMA they told us he would probably not live past his second birthday. We had met MANY families over our extended hospital stays whose babies were diagnosed with SMA. Sadly,most of them did not make it to their first birthdays. We were blessed to have Skyler in our lives for exactly seven years and seven months. Our angel, who never took a step in this world, earned his running shoes on January 25, 2013. In my heart he was still mine.
Skyler was too young to remember when I was his "mommy". All he knew was that we loved each other in a very special way. When ever we were together the first thing he would say to me was, "TT, hold me." And I would always think back to that first week when that was all I did. When I was trying to show him how comforting it could be to be in your mommy's arms, trying to assure him that he was safe with me and I would protect him and love him forever. And I would always hold him, even though it became increasingly difficult because of his size and because of the limitations his disease was putting on his body. In my heart he was still mine.
It was hard for me to stand on the sidelines in his hospital room that night. It was hard to know what my rightful place was. My heart aches. My arms ache. My spirit is broken. But it is hard for anyone else to understand because I am not his mommy. But in my heart he is still mine.