I'll tell you ahead of time, this post may not flow very well. The writing may not be my best. The thoughts shared might be scattered.
But I've been holding back feelings and I realized that someone else might have those feelings too. Someone in a situation like ours. Or someone who might later experience these feelings.
It's just that sometimes I feel like a partial mother. Like I don't have the same rights as those that were blessed with their special needs children through birth. Like my thoughts and feelings aren't weighted the same. This is not something that I get from those parents, I fully recognize that these are feelings that I put on myself. None the less, they are still there...and I still feel them.
I'm sure that someday that will go away, when I've had Gumby long enough to feel confident enough that, were I to encounter criticism, I could defend myself...even if just to myself. But right now I don't have that.
I don't have the common bond over when we found out that Gumby has Down Syndrome. We didn't go through any feelings of anxiety, worry, sadness, loss of what we had imagined her life to be like before we knew. I don't have the experience of her first four years of life. I don't know when she hit her milestones and I didn't help her achieve them. I've done nothing so far to help her become the child that she is today. She is the person that she is because of someone else. Not because of our family.
This might be a petty thing to think about, I know. But I still feel it.
Sometimes I just want to say that I don't care about all the research and finding out all that I can about Down Syndrome. I know the things that are important to know for Gumby, but I don't spend that much time trying to figure out more. And quite frankly, I don't want to know what is typical for other kids and what her abilities might or might not be based on experiences of other people. All I want to know is what Gumby can do. Gumby will do what Gumby can do and it doesn't matter what people expect of her. It does however matter what I expect of her. If Handsome and I expect less of her than she is capable of, that will effect her greatly.
I want to say those things, but I don't. I don't say them because I'm afraid of offending someone that has been a parent in this different arena longer than I have. I'm afraid of someone being appalled by my statements and getting upset. I'm afraid of someone saying that I should do things a certain way or I shouldn't have adopted a little girl with DS, because obviously I'm clueless. Because I don't want to make anyone angry, and I don't want to hurt anyone's feelings if my opinion is different than theirs.
So, I don't say much. I don't say much about how I feel in parenting Gumby because I'm a sort of outsider. Or so I feel.
I do figure that my feelings are the same as most parents in that I never want to limit Gumby by what people think can be her future. My thoughts don't ever dwell on things that limit her, only on the infinite possibilities and the amazement I feel in how quickly she is changing...and how smart she is.
So, while I am feeling brave against the normal limiting feelings I will say:
You don't know my daughter, just like I don't know your children. Don't assume she will not be able to catch up with kids her age in school because of her institutional background or her diagnosis. Don't assume that she will not live on her own as an adult. Don't assume she will not have a job just like your kid. Don't assume she will never get married. Don't assume that if she does, that person will fit into this category or that. Don't assume that she will never be a parent. Don't assume that she will not live a long and healthy life. Don't assume anything, just like you wouldn't assume anything about Curly's future.
Curly's future, Gumby's future, and Smile's future....they all belong to God. He, and He alone knows what that future holds. So please don't think you know anything that hasn't been shared personally with you about her, just because of a little test run on her blood that showed an extra chromosome.
(I would venture to say that those last feelings are ones that I am learning to feel that other parents have felt from the time their children were little.)
And if you are a parent working on adopting a child with special needs and you don't already have a child with special needs, just know that IF you feel like an outsider sometimes, I totally understand where you are coming from.
New Testament Blessings
8 years ago
6 comments:
I love when you post what's going on in your heart. You are incredibly brave and faithful and obedient. God is going to bless and honor your heart to this precious girl. I love your approach and although I don't fully understand what you are going through, I can say that I will pray and wish I could meet up with you today for lunch and give you a big hug! :)
Family trumps everything else! All that other "stuff" is just stuff. God chose a family for Gumby, and you are the mother of that family. God has prepared you for this since before you were even born. Gumby's most important needs are to be loved and wanted and have a loving home to grow in. In that context she is no different than any child. What ever other people think is of no consequence. Gumby's progress is perfection. Enjoy the process your family is going through.
As a mom of a special needs chid (my son has CP), I want to tell you that I admire you for welcoming Gumby into your home. Many people wouldn't adopt a special needs child and it speaks volumes to me that you have done so.
There is something that I told a friend the other day who's unborn daughter has DS and I want to share it with you, as well.
No special needs parents has ever walked the exact same road. Your feelings are your own. Don't ever let anyone make you feel bad or inadequate because of your feelings.
The best advice I could give you as a special needs parent, you've already figured out. Don't ever let anyone limit your child in what she can do. If we limit our children, they will never exceed those expectations.
Well you are sounding just like many of us who gave birth to our angels do! And I will tell you, the longer you parent her the stronger you will feel about other people's views on your sweet girl!
I have to say, a few times I have thought, "Why did we adopt a child with CP and not DS?" But I think it is because at this stage I still compare Nina with her sisters, which isn't fair, but it is what it is.
But, as an advocate for Nina, I am doing what I can so that nobody limits her, (even if they think they can run laps around me when it comes to CP knowledge!)
You know, maybe that is what it is. Slowly, our children make us into advocates. I have been doing it for 2 1/2 years with one, it is easier this time around.
And sorry for all the rambling! No advice, no help, just thoughts :)
We've adopted from the "rainbow" too and what you are saying could be spoken from my mouth too. Each child is so different and I am SO learning that lesson with my two boys with Ds (one adopted / one bio.). They couldn't be more opposite if I tried!
While you may not know how it feels to have been told the baby you carried has Ds, you do know what it feels like to be led by God to adopt your sweet girl :)
BTW at one time I knew what all the "standard milestones" were for children with Ds. Haven't looked at them for years - instead I have my boys writing their own :) You are doing a great job!
God Bless,
Mandy
Great post! Thanks for sharing your heart.
Even though my adopted children aren't labeled as "special needs" ... let me tell you, they have special needs. But, I don't want to label them. I have people saying, "Oh no ... he must be _____". Nope. No need for a label. We just deal with one issue at a time. Every child is so very different.
You're doing a GREAT job! God will lead you and guide you as you parent each one of your children.
Laurel :)
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