One of the most heart-breaking and hardest things to accept things about having a child with special needs is letting go of who you thought they would be. It’s having your heart broken, being told time and again all the things they’ll “never do” by doctors, and then trying to somehow pick up the pieces and learn to hope again.
When I was pregnant with my daughter, my husband and I talked all the time about who our baby would be. We joked that she would be the world’s greatest genius – a physicist, brain-surgeon, composer, author, astronaut, opera singer, entrepreneur and president. She would be the smartest girl ever. She would amaze us every day with her brilliance. My hubby joked that she’d be writing computer codes and speaking five languages before she could ride a tricycle. One some level, I believed it, because the level of hope and excitement in a new parent makes the child into a giant before they have even left the womb.
To have your dreams and aspirations for your baby crushed and taken away in one second is one of the hardest things a person will ever have to deal with. Hearing that there is a problem with your baby, that everything is not as you planned or hoped for, is devastating, utterly mind-numbing. Your hopes, your dreams, all your plans are suddenly just gone – evaporated into nothing. Your brain and your heart cries out for relief. How could this happen? This couldn’t have happened. Surely there is some mistake! But it’s not. Somehow you need to get past the pain of it, accept it and learn to build dreams again. This implies that it’s possible to let go of the pain for good, accept it and dream again when truly, I think it’s an ongoing, circular process. Every time you think you’re past the pain, it comes back and surprises you again. You see a child about the same age as your child doing something you thought your child would do, and the realization and pain of it slaps you again. You find yourself bursting into tears in public – yet again!
I am agnostic and I’m not really sure if there is a higher power out there or not. I wish I had faith. It would make things easier to accept. “God has a special plan for your daughter!” “Everything happens for a reason.” “Trust God to take care of her.” People told me these things to try to make me feel better. It didn’t help. Why didn’t God take care of my daughter by putting her genes together the way they’re supposed to go? What was God’s reason for letting my baby struggle four times as hard to do anything that any other child can do without a problem? Is there some great cosmic plan around why she almost died several times, and we spent the first year of her life terrified she would stop breathing? How is there any reasoning behind this? Why would God do anything like this to a baby if God loves them so much?
Then sometimes I look at what other families are dealing with and I realize that in relation, I’m very, very lucky. My daughter has an abnormality on chromosome 8 which has led to other problems, such as agenesis of the corpus callosum, hypoplasia of the left cerebellum, laryngeal tracheal malasia, developmental delays and so on. She will have lifelong effects from this, and we don’t know what all of them are because her chromosomal abnormality is very rare. However, what she has isn’t fatal or progressive. Three surgeries that the doctors insisted she would need – on her heart, her skull and her eyes – have all been unnecessary. She surprised them all because her body fixed itself. My daughter loves to hug and cuddle and be held. Not all kids do and that must be a very difficult thing to live with as a parent. She laughs often, has a big, silly grin and enjoys playing and hearing people sing. She is responsive and funny and is starting to learn some ways to communicate with us. Most importantly, she’s pretty healthy these days, even though I remain terrified we’ll go back to the days of the ICU. But month after month, she gets stronger and remains healthy and for this I am most thankful. I know there are parents out there who would give anything for their child to be healthy.
I think one way to learn to hope again is to remember all the good things you have. Whether you have faith or not, try to count your blessings. I’ve slowly started to realize that even though I didn’t get the child I dreamed I would have, the child I have is just as wonderful. True, she will not do all the things I dreamed for her, but then, most kids don’t do all the things their parents dream for them. I asked myself one day, what is truly the most important thing I want for my daughter – above all else? The answer was: happiness. I want her to be happy and healthy. In the end - intelligence, ability, cleverness, talent, wealth, beauty – none of these things matter without health and happiness. After all, there are many smart, talented, beautiful, rich people in the world who are deeply unhappy. If your child can achieve these two things, and I very much hope they can, then chances are they will have a pretty good life.
Even though geneticists looked at my daughter and gave us heartbreaking, mind-numbingly sad predictions of a barely functioning child growing into a severely limited adult, I don’t believe them. They could have crushed out my hope and happiness, but I’m thankful that I held onto my hope. I believe that someday my little girl will learn to walk and talk and crawl and do many of the things other children do. The things she does not learn to do, well, we’ll deal with those as they come along. The important thing is to take things one day at a time and to keep believing things will be ok. Yes, the doctors insist she will be “severely” impaired based on what her genes say, but I’ve decided to ignore what the doctors and the genes say and listen to my own heart. I hope you find the voice of hope in your own heart.
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