Thanks for sharing, Barb!! Deidre is the person she is today because of her family – all of you! and, because God chose to “confound the wise” through a little child!

I have a Grandaughter that is 21 years old now. Trying not to get into the medical aspect of it too deeply, she was born with several days of meconium aspiration and her lungs were non-functioning. She was airlifted from Albany Medical Hospital to Children’s in Washington D.C. and put on ECKMO therapy. (Extracoporial membrane oxygenation). Not sure I spelled that correctly. It is a like a heart-lung machine but it was just for her lungs.

Because of complications on the machine she is legally blind, has mild Cerebral Palsy and a seizure disorder. She is also a slow learner but does learn; not being able to see well to read has been a problem in her progress. She did graduate from CVCS with an IEP and a special program. Your Mom and Dad know her well. The seizures have been the biggest problem and like Carmen, she is on several medications, usually as many as 3 or 4 at a time. Lamictal Keppra, Dilantin,and Diastat are very familiar words in our family. She also has several different types of seizures and there is not any indication of what type will show up at any given time. They can range from just staring to complete Grand Mal’s. They have never been able to find a combination of meds that would take care of the problem. As she got older they became much worse and much more frequent.

Finally last January they did brain surgery to see what might be accomplished that way. It was a terrifying time. I hesitate to talk about it much in case anyone else is facing it, I don’t wish to frighten them, but I would always regard it as a total “last ditch effort”. She is better from the seizure aspect but they certainly are not gone; she has had 2 Grand Mal’s and appears to still have a lot of the absence ones.. OF course, those are not hard to deal with and come and go quickly. but since the surgery she has lost the use of her right leg. She is in therapy 2 days a week and is making progress but no one knows for sure if she will regain her normal use of that leg. She also has not passed completely out since the surgery. On a comparison basis she is much better off than she was a year ago now, except for the walking.

I guess what I am getting at with this long tale is that my daughter has also occasionally been frustrated. Like you, they cannot leave her alone or go anywhere without her, without having someone there who knows her seizures and knows what to do. They never make firm plans to do anything, it all depends on Deidre’s day, good or bad. They don’t do a lot together unless my other daughter or I can be with her. She is an only child and they love her without reservation and thank God that they have her. They were not able to get pregnant for almost 10 years, but I know that looking forward to things like a wedding and Grandchildren and other special things in life are not there for them. In the long run tho, we have all learned compassion ( not pity), pride in every thing she can accomplish and a closeness to God that we might have not recognized as clearly. I don’t look at my daughter as a Saint, I just see her as a Mommy who loves her child and would go through fire for her, and I see you as that same kind of Mommy. God knows who His special children are and He knows what special adults will take the best care of his little ones. I am praying daily for all of you, and I know that NY Grandma and Grandpa are praying for Deidre as well. Sorry this is so long, I have tried to pare it down but it was hard to explain.

My great aunt Vivian’s husband was permanently disabled at a textile mill when he was relatively young back in the 30′s before there was worker’s compensation. She had to go to work dedicate her life to making him comfortable and finding a way to make a new life. Her attitude was very much like yours–she didn’t choose her life, but she had to move forward. It didn’t solve anything to look backward and ask why (although I’m sure she had her moments), but when I talked to her about it when she was in her ’80′s, she said very simply, “sometimes that’s just the way life is. God hands you things and you do the best you can.” Simple, but true. You’re doing the best you can–better than anyone else could for your girls.

And Mr. Jordan has a made a good point in his comment…you being happy will have nothing but a good effect on your girls. So doing something for yourself is nothing to feel guilty over. Hugs from Georgia.

Allison

I loved the entry for today I hope that it will encourage all of you….
http://anerissara.blogspot.com/2008/08/through-lens.html

Something that my family has been doing lately is trying to see the blessing in ALL things…it’s often hard in the midst of trials of any size, life happens and we all to often see the “negative” side and forget that there is blessing in each moment.

Little ones wet the bed at night and this adds more laundry to the pile that has already been waiting to be done…but she’s here.

The good car breaks down, there is no money to fix it…but we have a run down beater that works enough to get us around.

Husband is laid off of work with little in reserve…but he’s home all day with us.

There is a new little one joining the family, one that will be coming with lots of challenges…but he will be our new son.

It is fall. The breezes and colors that fall brings are works of God’s hand showing us that He is here. He is here in the big things and the little things. He is here and He has NOT forgotten any of us. He is waiting for us…waiting for us to see that He is here…waiting for us not to forget that He is here…waiting for us to call upon His name again, although, some for the first time.

He has promised that when we call upon His name He will be there. He is holding us in His hand, even when we can’t see it…even when we don’t feel it.

Praying for each of you. I hope you have a blessed day.

Your post was pure and honest. I am praying for all of you. God’s grace is so incredible. He is being glorified through your trial. I also pray that He will draw more people to Himself through your family’s experience. May the love of Jesus continue to sustain you all.

In Him,
Matthew

Our daughter, we adopted from Guatemala as well, came home with some special needs. I do know that the Lord has entrusted us with these amazing children and we love them and care for them in the eyes of the Lord.

I can’t imagine this journey you are going through, but I praise you for your strength and courage to share it with all of us.

Suzanne