A few days later, during a telephone conversation, I discussed this day with my mother. I told her how it made me so sad that Grace could not run on her own. I wondered if she was sad. I wondered...even though she was laughing, if she was holding back the same tears I was. My mother gently replied, "Jacolyn, Grace is going to be okay". I was comforted. If my mom says everything will be fine, then it will be.
I think about that day and that conversation quite frequently. What did she mean? What is okay? Does her okay looks like my okay? Does Grace's okay look like my okay? What does God's okay look like? How will we know when everything is okay and as it should be?
Grace and NiNi
As one whom his mother comforts, So I will comfort you...Isaiah 66:13
16 comments:
ummm...tear. Why do you like to make me cry?
I remember people telling me it would be "okay" after I brought Crew home from the NICU. I knew in the back of my head that it wouln't be "okay". Almost 5 years later I realize the outcome is so so much worse than I ever imagined it would be. I know that sounds horrible. However, it never occurred to me that he wouldn't be able to communicate. I didn't realize how frustrated and unhappy he would be to sit on the sidelines and watch. The days are hard and long.
Tonight, after dealing with two LONG weeks off from school and therapy I experienced one of God's "tender mercies" as he snuggled down with me and fell asleep. I held him and thanked God for allowing me to be his mother, a calling for which I sometimes feel inadequate. I hope I'm doing "okay" with this huge responsibility. I surely do feel blessed to have him in my life. You have a wise mother. What a wonderful thing... Jacolyn, I too have decided after many prayers and tears-- it's going to be OKAY. I don't know how, I just know that it is.
Sorry for the novel. I love your blog. You are such a neat person. Thanks for being you.
thanks for your post. your kids are so cute. i have been reading, but never commented. i have twins, one of who has cp. his therapists always comment on how well he is doing. i always wonder what that means. well, like he will walk? well, like he will speak? well, like he will lead a self-functioning life? your 'okay' is my well'.
www.drakeandlulu.blogspot.com
That is a hard one hugs
Your mom looks so great!
I think what she means is that Grace will be her own okay. She's got great parents who love her just as she is and are encouraging her every step of the way. I have not been in your shoes, but you are always in my thoughts and prayers. Someday I'm going to take that Heartland Flyer to Dallas and visit you! I've always wanted to ride on a train. Hugs!
My words of encouragement come from another angle...I think you are so good to have Grace use child-furniture to sit on rather than on the floor. I suspect you do this because of the influence of conductive education.
While it may seem small, routinely sitting on a chair will help her move more and better later.
Barbara
Grace will be okay. I think sometimes it is the mothers who will bear the most scars. In a sad way I coming to a bit of feeling okay, that ELizabeth has limitations and that we need to work with them and not against them all the time. I think as she is getting older I need to find something she will excel in like music. I am spending so much time and energy trying to get her to keep up with her peers which I am realizing will never happen. In my thinking she needs something she can do to feel proud of her accomplishments, it won't be ballet or gymnastics but maybe it will be playing an instrument or painting a picture.
Thanks so much Mel. It means so much coming from you...boy, do you love your family well!
Jacolyn, Please realize you are not alone. I think we (moms of children with special needs)all wonder about this at some time or another.
I know I have seen your mother before...she looks SO familiar.
Oh I've heard that before. Or better yet I've heard, He won't know the difference he's never known anything else. WTF?? BUT that being said, if my MOM were to tell me everything will be OK. I'm good with that, moms know everything!! :)
Everyones OK is different I suppose, but I am sure she will be happy. Yes I'm sure some days she'll be sad, but she'll remember that she is well loved by her mommy and you'll tell her it will be OK and she'll know it to be true also!
This is such a good post. Over the years, I've learned to not compare my idea of normal-kid OK with the reality of Max. He is a great kid. Period.
I just did a post today and stuff I've learned about having a special-needs kid, swing by if you have a sec!
I came over from Mel's blog. I love this post! There is something about just hearing those words..."Everything's going to be okay" that is soooooo comforting! Thanks for the insight!
wow! you have a very smart and special Mom. And your kids have a very special "NiNi". And, each of us is our own "okay". Rolanda
This is a great post. I have my own idea of what my Okay is for Evan based on his abilities right now, so if he does not progress past where he is now my Okay for him will be to use his communication device, signing and whatever words he can say to communicate, to be able to live in some sort of group home where he has some assitance and supervision but also has to do stuff on his own and to hold down some type of job. It would be awesome if he did more than this but I really do not know what the future holds so I am just going to base my expectations on what he does now and then change them accordingly. I would love if Evan could have a functional speech, but I really feel that I have to think about all that he does do. He walks pretty well and is now able to use pointing and showing us what he wants to communicate. For me the Okay changes from time to time. And on the Mom thing. I think Mom's still want to be able to fix things for us because we are still their children even thogh we are grown up. But that she truly believes that Grace will be OK, she is going to be a stronger, more compassionate person for what she has to go through and the upside is that it will rub off on her siblings and other family members as well.
I've waited to post because I guess I feel I have no right to say anything since I don't have a special needs child and haven't walked in your shoes. But... I've walked along side you and I know that Gracie will be o.k. And Mack and Sophie will also be o.k. They will ALL have sad days, good/bad days... sometimes life won't be fair to them... but our job is to teach them to press on. To show them by example to keep looking up. And on the days we look down, to teach them that others are there to lift us up. That's all. love, J
What is OK? It's a tough question and I think we all ask ourselves it from time to time. I finally decided that for us, OK will be this: does Charlie feel loved? does he feel like he's part of our family?
I worked with kids for several years before I had Charlie and I often comfort myself with this: no kid is OK all of the time. There are insecurities and eating disorders and drugs and bullying and teen pregnancy and crappy grades and a whole bunch of other things. Right now, Grace is getting the Lion's share of the tough stuff, but it won't always be that way.
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