I see this is a new place. I hope it will grow. I am a grandparent. A 3000 mile away grandparent. My Rebecca needs me. I give her some things special and simple. I put her on my lap with a towel across us and I feed her a popsicle. I sing to her. I lay down with her on a soft blanket and look up at the sky through the trees. I miss her so. I don't know what to do about the lump in my throat that comes when I think of her.
I am a grandmother, too, and I do so understand your heartfelt struggle. My daughter, Stacie, is 34 and she has Rett syndrome. I have two sons, 41 and 39. My grandchildren are 16, 14, 12 and 10.
It must be so hard to be so far away from Rebecca. Do you communicate with her parents with lots of photos on the computer?
Hi Rose, I too am a grandmother of a rett child and am lucky that my angel lives close....I never realized how blessed I have been..I four children, all healthy, three grandchildren and my daughter Sarah, mother of my rett angel is expecting another girl in November. After learning of Garnett's diagnosis and having the opportunity to meet many wonderful parents and grandparents of children with Retts...I realize that I am more blessed than ever. This experience has humbled me and given me the opportunity to be a better person and advocate for children with handicaps. I cant imagine living so far away from my children or grandchildren...I love having all within a 5 minute drive to a 4 hour drive....it must be difficult. There are alot of other grandparents that I have met and some have moved closer to their children to be able to help them, but that is not always possible, soooo you have to make the best of the time you have together and help your daughter by learning as much as you can about your angel and stay in touch...they always need someone to talk to and to lean on when they have a tough day. Hope we get to know one another better, we hurt twice, once for our daughter and then for our angel..it is tough.... Mary Lewis Grandmother of Garnett
I must say that I don't like this grandmother role. It too makes me feel powerless. I see things that need to be done for my grand-daughter, and I can only make a suggestion. If this little girl were my very own little girl, I'd make sure that she got her PT 3 times a week. I'd see that she had a wheelchair that suited her condition. I'd be at CCRS (children's rehab. services) making sure that she had that arm brace, those thera togs, etc. I'd make sure that every single bite she took had the calorie powder added to it. I think of her at times and it brings tears to my eyes, that her time here on earth could be so much better.
Yes. Yes. That is what I am talking about. Perhaps the distance is actually helpful so I can blame my impotence on it rather than on the impression that my ideas and opinions are not worth much. And they are so busy with living their lives: "Hold on Mom we're in the middle of costco both kids are crying, I'll call you back; No, I didn't have a chance to read your email I've barely had a chance to shower; Oh listen mom that's the case coordinator on the other line I have to get this..." And moving to be closer to them (even if it was possible), sort of sounds creepy like every time they move I move too. Like a movie where Kathy Bates would play the part of the mother. And at the same time I feel like I could make her life "so much better", I also know that truthfully I couldn't even make my own daughter's life so much better because I was too busy doing laundry and working and you know, going to costco.
Rose, I guess that is why we think that we can help our children with their children. We have been there and know how much it takes to keeping the house clean, groceries bought, children fed, bathed and clothes purchased, washed dried, folded only to start over again. I wish that I could have done more with my children and not having to worry about all of the aforementioned....but it took getting older and having experience in really knowing what is important...much like Erma Bombeck used to stress...Sometimes we just have to be there...and offer to be there...and then wait for them to want us or need us to be there. I am lucky that my daughter lives close enough that I dont have to wait for her to invite me..sometimes the best times are to just show up and tell her to take a walk, or do something she wants to do for a while, because I want to spend some time with my grand-daughter and dont want her to interrupt us...she knows what I am doing, and she appreciates the her time even if its for only a couple of hours..we both benefit....Trust me, I am sure your daughter is much like mine. Sarah is overwhelmed by the diagnosis and is trying to continue to make her life as normal as she can, never knowing what tomorrow will bring. These young girls are under alot of pressure and Sarah doesnt ask my opinion or what I think about her daughter and what type of job she is doing, but I occaisionally drop a hint but dont force my opinion on her...I just spend my time learning as much as I can learn so that when the day comes that she asks my opinion I will at least be as knowledgable as I can be, and I enjoy getting to know other grandparents that understand how I feel:). God Bless You and Grandmother Angel Hugs..we all know what you are feeling.... Mary
I sometimes wish that in another world, another time, I could be that perfect grand-mother/mother. It is frustrating to me. I often times question my own value to these two words. I daydream of a perfect Trinity, I see a little girl her age walking beside her mother, holding a doll, all dressed up cute, with chubby legs, and I think, how can I be a grandmother to a little tiny china doll of a girl that I am fraid I might break. Her body is stiff as a little board, she can't just relax herself to fit the contours of my arms, except when sleep peacefully over takes her (with the help of clonidine). Her face relaxes, her body finally becomes limp, I can take her armband off that prevents her from biting her hand so hard it bleeds. It is then that I can rock her and sing to her. But it is also then that she doesn't know I am there.