After so much was lost I tried to reach out and look beyond the pain that someone I once cosidered a dear friend caused me. I had hope for this person but I learned the hard way you cannot hope for someone who never saw hope in you.
I’ve really thought about this post, I don’t want to be mean or cruel to anyone. This blog is my public journal in a way, I can share my feelings and experiences while reaching out to other families. I help other parents who feel they are alone, I say the things a lot of parents are not ready or are afraid to say aloud. So this post is not meant to hurt anyone’s feelings or attack anyone, sometimes when we look from the outside in we can see with more clarity. Unless you have only one view of life and how it all comes together.
When a fellow blogger posted this post Realistic Optimism about her journey to acceptance with her reality that her daughter will most likely live with her for the rest of her life ,I felt like she was speaking for me. It’s beautifully written and a truth not many are comfortable accepting.
The other day it was observed by another that I have lost hope for my daughter. Really?? I had not realized that, I was shocked at that observation. I did not understand why this person would come to that conclusion. My older daughter who heard the conversation showed disappointment and disbelief at the accusation. I wondered when this had happened because I do not feel like I have lost hope for her. Oh wait, could it be the fact that I have chosen not to make my daughter’s disorder my solel motivation for living. I have chosen to accept her for who she is. I have chosen to embrace and live my life without beating myself up about how I will teach her to do everything! I have chosen to allow her to be a child, to let her lead me in her progress. I have accepted that this whole syndrome and development thing is not in my control at all. I have realized that she WILL reach HER full potential in her own time. It doesn’t matter how many hours a day I spend trying to teach her or how many therapies I try to fill her life with.
I have 6 children, not 1 but 6. Just because my daughter has special needs does not mean I will neglect my other children to push her down a road that may not be the right path for her in the end. I refuse to live my life solely for her. I’m not sorry if this truth about me is hard to swallow. My children meaning ALL my children are my life. Accepting that my daughter has significant delays and may not accomplish a lot of what society may deem important is not a loss of hope. It’s an acceptance of my truth. And it’s not wrong. This acceptance allows me to focus on what she really needs without creating an illusion of the child I expected to have.
Each of us chooses how we embrace our journey into this life of special needs, I have chosen to embrace mine with truth. I would prefer to have a child that can experience life with her family than to have a child that although may be very smart cannot enjoy the outside world. If this makes me cruel in someone’s eyes, oh well. I refuse to live my life based on what others think of me.
What this person fails to see is not only do I have a ton of hopes for my child but so do her brother’s and sister. What this person has failed to see is that in that small period of time that I was totally obsessed with this syndrome my family was paying the price. All children develop differently and at their own pace including typically developing children.
You can have two children with the same exact deletion, using the same supplements and receiving the same exact therapies but the two are at complete different stages of development. It does not make one child better than the other it just means their strengths are different. There has not been sufficient research on this disorder to give a definite answer as to why this happens. You cannot compare two children even if they have the same disorder or deletion size. Another fact to consider is the child’s health, a child that has health complications like my daughter for example will most likely be more delayed. Why? Because they spend so much time trying to stay healthy it can impede the development process. It does not mean they will not be great because no matter where my child is developmentally she is AMAZING and will always be. Nor does it mean the parents have not done everything possible to help the child along. We can only do the best we can, no more than that. The rest is up to God, if you believe in him. I know I do.
Another thing I would like to address is that it’s not right to say to someone “some children are worse off”. Don’t belittle someone’s suffering. We know there are families who have worse complications with their loved ones but it does not take away the truth that “our suffering” is still valid. I understand while on the outside someones circumstances may not seem so difficult but that’s not the way it is for the person or family living through it.
We all have our own way of coping with what life throws at us but it does not mean that anyone has the right to make you feel like you are an inadequate parent. Nor does it give anyone else the right to try to tell you what is best for your child. It’s great to have support and it’s great to be able to disagree but where do you go after a line has been crossed?? How do you come back from that, I mean you know that every time you see this person the fact that they view you as a hopeless person is not something you can just forget.