The Sacrifice of Parenthood – Disabilities and Children
Parenthood is a very challenging experience. For so long in our lives, we truly only responsible for ourselves. Certainly, we understand the concept of love. We love our family and friends, but it is different from the love we end up having for a partner. We then have a relationship (sometimes several) where we discover an external love for someone not family. We fall so deeply and so passionately in love that we decide that we want to have a child with this person. You start the journey of pregnancy with some visits to the doctor and you get some ultrasounds. These scans tell you whether everything is good with your baby. Now, back when Josh was born, I recall the scan being sooner rather than later and I recall my relief when I heard the technician say that we had a healthy baby boy on the way.
But…and this is a big but, what if the technician had been silent? What is he or she had said the doctor will need to speak with you? What if the doctor had said that she saw some problems with Luke when he was in utero? I think about these things as I look at all the babies out there that are abandoned. You may say that babies are not abandoned, but I recently spent time looking through a listing of the children available for adoption and my heart broke at what I saw. Most of the children seeking a forever home had profound disabilities – physical, cognitive, or emotional. Of that group, the most noticeable were those with profound physical and cognitive disabilities. One child had the need for 24/7 nursing care, needed to be close to a hospital at all times, and needed a parent to be home with him almost all the time.
Now, when I started this blog, I said I would always speak honestly and openly. So, I would ask those of you that might read this – is that a gift from God or a prison sentence? Life is precious, I know, but we throw it away in this world of ours so frequently for people with no challenges. I am very lucky in that Luke was born healthy and without any issues. But what if he had not? Would I be able to give so selflessly? And if people think children are such miracles, why then are so many children in the state foster and adoption system children with profound disabilities? I am lucky to never have to be faced with giving up my child, but I see so many parents that do. I do not see these children being adopted readily. This is not to say that they do not find homes eventually. But, what if they do not?
So, this brings me to the topic. Medical termination of a pregnancy when you know that your child may have a profound disability. Some parents decide to have their child anyway, which I completely respect. Some lose their child soon thereafter and take with them memories of their little loved one….a love unlike that of a family member or your partner. It is a powerful love that can overwhelm every part of you. Those parents take with them to their dying day those memories. Other parents do not lose their children. Instead, they raise them. These children lead a long life. I recently saw a couple at a restaurant with a child that had down syndrome. This child was not highly functioning, but still high enough to behave quietly. The catch – the couple had to be in their 70s or 80s and the child looked to be in his early 40s. Somehow, I felt like this was their life.
I read an article about a mother with a child that had a disability. She was so grateful for an iPad because it distracted him. Her thought was that as a small boy, he was fine and so sweet and gentle. But, now, as a grown man standing about 6’4″, she was deathly afraid of him losing it in public. She had been at her daughter’s recital and her son started to lose his cool. How would she control a 6’4″ 300 pound child without it being a safety concern? Luckily, the iPad calmed him down and she was grateful for that, but she said this would be the rest of her life.
So, at once they are a gift, but they can also be a prison sentence. We, as a society, cringe at the thought of medical termination. Make no mistake, I am not saying this for a child missing a hand or limb. We are talking higher level stuff here. These are questions you need to answer before you jump into parenthood. As you look at your spouse and you two decide to take this road, you have to ask yourself what are you willing to sacrifice for it? Are you willing to give up your independence? Are you willing to sacrifice your time? Your future? Are you willing to give so selflessly that you put others to shame with your sacrifice?
I know we were not. We discussed it and we decided that we could not do that. To some, we might be monsters, but we knew the limits of what we could reasonably do. You have to find your limits. You have to have that talk. One couple I heard about had a child they knew was going to be disabled, but then got upset that they did not get more government support. These people knew they would not get support based on their income, but then got mad that they did not. Rather than pay for it themselves, they just stopped working so much so they could qualify. I am not saying that will be any of you, but what will you expect? Who will shoulder the burden if you decide to proceed with the miracle of life? More importantly, what if you do all this and then decide you cannot do it any longer. Remember, most of the kids in foster and state care have these profound disabilities. I wonder how many of those people thought a child was a miracle and would not entertain the idea of a medical termination.
This is a hard topic and to those parents that do this…that made those sacrifices. I have nothing but respect for you and your sacrifices. Truly. I am simply stating that prospective parents have to think about these things. These are issues that impact you and your lives for the rest of your lives. Give this real thought. Yes, life is a miracle and perhaps you would be out of favor with your god, but you will spend a lifetime doing what you have to for a child. Just give it some thought…real though. Have a conversation with your spouse. Know what you plan to do if the situation presents itself. I certainly hope it never does. Good luck out there…..