In my lifetime I have felt like i have had to gain approval for many things. I'm sure everyone feels like that sometimes. I have to meet the approval of my kids, husband, community, and so forth. . . According to my 5 year old son, nothing i do is ever right, and has to be approved by him and only him! If we don't have Honeycombs , I am in trouble or if the tea is not sweet enough, he says "this is not like dads tea!" I respond sarcastically, "Why because it doesn't have 5 cups of sugar in it!" He is a pretty easy going kid otherwise, he just complains about everything. He will complain, I will give a response and then he goes about his business and forgets about it. Of course whatever James says or does , little sister Samantha is not too far behind in agreeing with him and learning his ways.
While I can deal with the childish disapproval of my kids, they are my kids of course, they are 3 and 5, and I love them. We will have a whole lot of other disagreements and disapprovals in the future throughout our journey of parenthood vs. childhood into tweenhood, teenhood, collegehood, and adult hood, God willing. I also sometimes feel the disapproval from physicians, relatives, general public, and even other parents. I guess we all can't agree on everything or we wouldn't have anything to talk about or learn.
Examples:
Took Sam (15 months at the time)to store with me. Woman who has seen us before:" Why don't you put her down and just let her walk, you arent doing anything but hurting her keeping her in the buggy or holding her. "
Me: "Well , she has spina bifida, i don't think you understand, she CAN'T walk by herself, we are practicing that with her braces and walker."
I don't know about you all , but at 15 months old, i didn't let Sam walk in stores, she was barely walking with her walker.
Example:
Old Cooky Lady at store: " She doesn't need those braces, just get her a good pair of high tops and that should do the trick!
Me: Laugh and looked at her kind of weird i think :) I just didn't feel like explaining it indepth at the time.
As a mother of a child with a special needs child, i am educated about her needs and know about what she can and cannot do. That being said I am always open to learning something new about her or something that may help her. I do have hope that she will walk, I do have hope that she can do a lot of things, and not let anything stop her. I feel like her doctors put all of these spina bifida kids in a box and say, "they" probably won't beable to do this or that. I was one of those parents who was told that Samantha would Not beable to walk, if she did it would be one of those 1 in a million miracles, and she has been walking for almost 2 years not and she is 3! Why do they do that, i don't understand. I am aware that i should have realistic expectations, but they make me feel like their is nothing i can do to help her and that she is going to be the way she is. Well that may be so, but what if. . .
While we have had a lot of support from our community - Thank you friends, family and community for everything you do and are continuing to do for us! We love you!
I do not feel we will have the same support from our physicians on our choice to obtain stem cell treatment for Samantha. I know this issue is controversial and many physicians are against it or just don't know much about it. We will get some eye rolling and so forth from some, and hear lectures.
While everyone has their views and opinions, mine is, it is not something that proves any hurt or pain, and if anything it could help her and she is young , it is best to do it while she is young and growing. their have been only mild side effects at the time of infusion. I have researched it extensively and with the help of many other parents, grandparents, of course documents and websites, and living proof that stem cells have helped many! How can we not do this!
We talked about this in church last night, and i will go back to this often when i feel like someone is judging me in any manner.
Galatians 1:10
English Standard Version (©2001)
For am I now seeking the approval of man, or of God? Or am I trying to please man? If I were still trying to please man, I would not be a servant of Christ.
I cannot dwell on these disapprovals, I have to move forward and do what i feel is right, right for me, my kids, my family! I do not feel that this opportunity would be handed to us without God's approval! I do not feel the knowlege and living proof would be here without God's approval!
Until you have walked in my shoes. . . .
4 comments:
I know what you mean about not having support of the doctor for something they just don't understand. My little one isn't here yet, but we opted to do fetal surgery for her spina bifida. The neurosurgeon who will care for her after she is born and place her shunt actually rolled his eyes at us during the consult. He basically discounted all the positive results of the surgery and treated us like we were stupid and expected too much. While we on the other hand knew that the surgery is not a cure and there's risk of prematurity, we KNEW we had to do it for our little girl... so tell 'em to shove it and do what you think is best for your little fighter!
Good job for doing what you believe is right for your little one! I look back, fetal surgery was in trial when we were pregnant, i kind of wish we would have applied for it back then, but who knows we may not have been accepted and i remember in the back of my mind not 100% completely doing it because of the risk to the baby. I guess we can't go back now and change anything :) I will be thinking of you and your little one! Wish you well, did you already have the surgery?
Yes, I had my surgery on November 8th. We're 33 weeks now, with a c-section scheduled at 37 weeks. It's exciting and scary at the same time! I love your blog... like many other SB mommies, you inspire a lot of hope for my daughter :)
I love you Jenny! What a blessing they are. Love Grandma and papaw
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