|
|
|
We want a second child. Our son Alex is fifteen months and we want him to have a sibling like both my husband Stephen and I did. I am the youngest of seven and Stephen is the middle child of three boys. We are close to our siblings and want our son to experience the same closeness. But our wanting a second child is borderline selfish because Stephen has ALS (Amyotrophic Lateral Sclerosis) or, more commonly, Lou Gehrig's disease. We knew the diagnosis when we got married and we knew it when we made the decision to have Alex. But back then Stephen was walking and spoke in clear speech. The future of a wheelchair and my repeating, "Honey, I can't understand what you're saying," was far away. Now the future is here. Stephen transports himself using the high-tech Permobil wheelchair which navigates direction with a joy stick, more than fitting for my computer-games-obsessed husband. And Stephen's beautiful, full lips that always thickened some of his words and made my heart beat faster, now lack the muscular ability to fully grasp a straw and suck liquids through it. It feels morally wrong for us to want another child or to ever have wanted and had one. On the other hand, we could never look at Alex and feel a single regret for having him; if we had missed even a single second of the last fifteen months, we would feel the deepest pain. But with Stephen's health deteriorating, with our lives a little harder and more demanding, we labor over our decision to have a second child. Somewhere in the back of our minds is a quiet belief that a sibling would be an anchor for Alex should Stephen die. You talk to a sibling differently than to a parent. Siblings experience things similarly, in a way a parent doesn't. If Stephen dies, I lose my husband, the love of my life; Alex loses his father. The two do not compare. Also, Alex shows such great joy when he sees his cousin Zoe, who is five months older than him. Even though they only live five blocks apart and see one another almost everyday, they go absolutely berserk when they see each other. They scream, clap their hands, and do excited little dances. Their relationship is so incredibly special and we see how much Alex loves his best friend. Does it mean he would benefit from having a brother or sister? How would a third child affect the friendship between Alex and Zoe? We have no way of knowing the answer. Sometimes the desire to have a second child feels like gut reaction. Especially when I am helping Stephen get dressed and out of bed in the morning, and Alex keeps pulling the legs of the wheelchair down and climbing up to play with the joystick. Or when I'm helping Stephen go to the bathroom, an urgent, time-sensitive event since his bladder muscles have weakened, and Alex dramatically throws himself to the floor crying by the side of the wheelchair. Or when I am feeding Stephen, who must eat a lot throughout the day in order to maintain his weight, and Alex cries, holds on to my legs, and yells, "Mama, no." At these times, I think a sibling to play with would be very good for all of us. And then doubt creeps in and I wonder if our attention given to anything or anyone else would upset Alex even more. Alex is already competing with Stephen for my attention--why should he compete with a brother or sister? Stephen, the middle of three sons, says he felt no competition with his brothers. He feels they all got lots of attention. But for me, it's different. Coming from a family of seven children, I know all too well the fight for attention. My dad put in long days at work and money was always tight. Though my parents loved us very much, lack of time and money and lots of kids meant tons of hard work and exhaustion. It left little time for individual attention. I always thought that I would have two or three children, never just one because siblings are too important to me, and never more than three because too many kids means less individual attention and money (we already joke about the amount of money we need to set aside for "angry teenage" counseling). Stephen feels the same way about family size, and it's the path we would have taken without question if he were healthy. But, he's not. And so we question ourselves constantly, continuously coming back to the same question: Are we being fair to Alex? And what exactly does "fair" mean? Stephen says when he debates our having a second child, he thinks of my sister Linda, who desperately wanted a child. At thirty-four, she decided to stop waiting for Mr. Right and took a bold step towards artificial insemination. It was an incredibly difficult decision for her; she was reluctant to share her plan and found little support from the community when she did. One of the doctors Linda approached in her small Midwestern town refused to help, saying he didn't support lesbians having children. So, she went to a bigger city and found a caring doctor who helped her get pregnant with my nephew Cameron. Today, Cameron is eleven years old and he's incredibly intelligent, funny, and very emotionally well-adjusted. Cameron doesn't have a father in his life, but he had my dad--his grandpa--who played the role of surrogate father with glee and an enthusiasm that only a grandparent, retired and with time on their hands, can give a child. Linda made a tough decision to raise a child alone without any outside financial support, but they are doing great. Cameron is surrounded by grandparents, aunts, uncles, and cousins who offer lots of love and emotional support. They have thrived in a situation that many would have predicted would fail. My mother-in-law Peggy revealed to me one day that she had been very concerned in the beginning about the emotional well-being of Alex and Zoe. Zoe's father (Stephen's brother Jamie) puts in a sixty- to eighty-hour work week at the ALS Therapy Development Foundation, the organization he founded to search for a cure for ALS when Stephen was first diagnosed. Peggy worried that the time spent researching a cure and the drain on our emotional states would mean that no one would have the time and energy to support the needs of two children. However, her fears have not been realized. Alex and Zoe, she noted, are two of the happiest, most well-adjusted children she knows--and since she's a therapist, her words carry special weight for me. Like Cameron, Alex and Zo‘ are surrounded by extended family, and we have all taken great pains to make their young lives rich, just as we would for any future child. The bottom line? People with no partners, family, or community support have children all the time. Alex's life is full of love and support. So would the life of any other child we'd choose to have. Stephen and I were lucky to have siblings and parents who stayed together. Still, neither of us had the advantage of grandparents in our lives the way Alex and Zoe do. It's always a toss-up who Alex will run to if Stephen's dad John or I walk in the door at the same time. Alex loves Papa, who dotes on him. The way John interacts with Alex reminds me of my father with Cameron; he makes sure to give this young child all the hugs he would normally give, plus extra ones for the hugs the child's father can't give. Last night, John and Peggy watched Alex while Stephen and I went to dinner and a movie with friends. At the table next to us, a father held his four-month-old son on his lap while he ate. Watching them, I felt an ache shoot through me. I long to be pregnant again even though Alex's birth ended in a C-section after thirty hours of labor. It was hard work, but I look at Alex and my stomach jumps. Who can remember the pain when he hugs and kisses me? Looking at that baby on his father's lap, I knew that we would have a second child. That we would follow our family plan just like any other family would, clueless as to how long our lives will be. We don't know if the Foundation will find a cure soon, if Stephen will live for years on a respirator, or if he will leave us. But we do know we love each other and that we are lucky in the love we have from friends and family and that that love translates to our children. In the end, it is our decision and we chose to live our lives as normal as possible. "Are we foolish?" I asked my husband after a very long day. "Should we really have another child?" "No," he said in his usual matter-of-fact tone. "But we will. Or, at the very least, have fun trying."
|
