Tuesday, February 22, 2011


I am sitting here with lots of thoughts the last few days. I wanted to come here and write about it all. I wasn't sure what to entitle it, so I am simply writing about Jamie. There is so much in my head and my heart right now that I am not sure where to start or where it will end and I am sure it just might ramble a bit as I think of things, so please hang in there with me!

Did you know that any time the human brain is without oxygen it can cause problems? Well, I am sure you are. Even if at such a time as birth, for a few minutes, it can change a lifetime, as I am convinced that is what happened to Jamie, my second child.

He was a big baby to start with so the doctors, without asking, or telling me anything about it, used the vacuum extractor to help 'pull him out'. Come to find out later, he had to be revived, with blow by oxygen. These two events, I am sure, changed the course of all of our lives. Mostly his.

We noticed things right away....most people thought he was deaf as he wouldn't respond to his name. I knew otherwise. Many things added up and he was tested. And tested some more.... It was decided that although he had many of the characteristics of autism, he did not fit the criteria at the time to be diagnosed that. They called it 'probably Pervasive Developmental Disorder' BUT said he wasn't that exactly either....that Jamie was a 'rare bird'. Really. In my searches I came across Hyperlexia. Look it up...there is a book that was written on it. It could have been about him.

As a parent when you learn that your child has a disability, so many things are felt. It is a form of grief. You grieve for what will not be. The things you won't do or see him do. You think of what if, what could have been. Then you get to the reality. The WHO he is. and all of the stuff that goes with that. We were put into a world of IEPs...strange looks from those who did not understand, a world where your 4 year old finally reaches up and touches your face and says Mom and it is the best word you have ever heard. Jamie has been my education. I have learned so much from him about so much. The good and bad in the world. I have seen much of both.

And we have made sacrifices. Some as simple as no family pictures. Because of his disability, he avoids his dad and oldest brother when he can. Since he was 2 , he has reacted to his father's cough. Many years later his brother was added to that. Now of course they don't cough all the time, but he does not want to take that chance. If you see him and he is plugging his ears, that is why.
What this means is great. Meetings, doctors, shopping , anything is done without them. Every day things like family meals no longer happen. Christmas Jamie spends opening presents in his room. I am his parent. It is hard for me to not be able to get that support from another parent who can take over some of the 'stuff." It is hard for him to not be able to be there. Like the last few days.
In October Jamie out of the blue had a Grand Mal Seizure. It was THE most horrific thing I have had to witness. I cannot find the words to tell you. After appointments, tests, there was no reason found. No medication was prescribed because with no reason found, and only one it isn't guaranteed that it will ever happen again....actually only a 20% chance that it will in 5 years.
Well you know us and the odds....yeah it happened again. Sunday morning. 6:50 a.m. I am at the computer and hear a loud crash. I knew in an instant it was happening again. I ran in there. While it is happening, I can only watch. Once he came out of the body shaking part, it was another 10-15 minutes before he was conscious again. Another 10 or more before he was able to talk. When he first got up on his own his limbs move like a ragdoll and he could not walk right, it took awhile before he was able to talk with making any sense. He would not go with the ambulance people, so I had to take him to the ER. They decided to admit him. Little did we know it would be 24 hours before we actually saw another doctor. I do appreciate the nurses there, they were amazing. And I do give credit to all of them and the doctors for talking TO Jamie, to asking HIM the questions, to giving him the respect of treating him like a person. I can't tell you through out all his 23 years how many times that does not happen.

Yesterday in the hospital was exceptionally hard. I had no relief. As I have mentioned, he avoids his father. He was able to bring me the computer the night before so I at least had that. Jamie saw him, said I love you, goodbye and was clearly agitated. That has to hurt. It is hard to see and hard for me, knowing that it is only me there to deal with him , the doctors, and everything that came up. All day he begged to go home, he cried , every minute he asked to go. Wanting to go to Shopko and home. No matter how many times I would say yes, or later, or when the Dr said it was okay, he would ask again. Then again. I try so hard to have patience and understanding. Sometimes I get tired. And frustrated. I walked out of the room at one point, needing a break....tears in my eyes. I wondered, why....yup again, WHY. Why did God make him this way? and WHY of all people to have to deal with the seizures and tests and medications now having to be taken....WHY Jamie???? Why the struggles he has had, is having , will have?

and dear God, WHO is going to be there after me???

I worry about that often. Who.

And there I end....because that my friends, is what is on my mind right now.....


  1. Joy, I have no words. I just want to give you and Jamie a hug, it's not much but I hope it helps a little. God bless you all.

    Laura (llbun)

  2. Joy, I don't know what to say either. I truly do sympathize with you and even understand a lot of what you are going through. I have walked in your shoes - not as a parent but as a grand parent very involved in our grandson's life. His dad is a part time dad, who he sees every other weekend and maybe not even then depending on what dad has going on. His mom does everything, IEP meetings, dr. appts., sickness, etc.. We help as much as we can and he does allow us to do so but we are not there 24/7 obviously. The biggest issue we are dealing with now is that he does not like his older step brother nor his baby half brother. And when I say he doesn't "like" them, that is putting it mildly. He wants nothing to do with either of them; doesn't want them around; doesn't want them to look at him, doesn't want to be in the same house or car with them. He spends a lot of time in his room playing with his "kids" (these are stuffed animals that he has declared to be the dad of). He doesn't want to join in the present opening on Christmas or birthdays. He'd rather stay in his room with his "kids". He is only 10 and I worry about the anger he shows toward these two "brothers". I worry about him all the time. I could go on but I won't. I just want you to know that I do understand and I do empathize with you. You and I have a lot in common. I pray for you and Jamie and will continue to do so. I wish I could do more.

  3. Eileen,
    We DO have a lot in common, don't we???

    I do so truly understand ....wouldn't it be great to have that magic want to make it all okay?

    Your daughter is lucky to have you! I cannot tell you how much your help must mean to her.

    The frustration, the isolation, sometimes is hard for us parents...Sometimes it feels that the world is against you. Sometimes I look at him and think...what if.....what would he be doing now, what would he have studied, would he be married, what would we just talk about??? I try not to think of it too much....as it truly makes my heart ache....

    Just your prayers and words mean the world to me!!
    and your hugs Laura!!

    thank you.

  4. Joy, I can't imagine walking in your shoes! Your story had great depth of feeling in dealing with your sons situation and all of the trials you and your precious son has had to face!!I will keep you and your son..actually your whole family in my thoughts and prayers!!! There is never a burden to big or too heavy that God can't bare...

  5. Joy, You seem to have a strength that will allow you to always be Jamie's support. Your love for him will be felt by him and willbe a light for him always. I will pray for you, Jamie and your family and hope for peace in your hearts.


  6. Joy I have been with you thru Jamies birth since we both had boys at the same year.. I could not walk in you shoes however because our situations have never been the same with our boys...I always have thought of you though thru the years of Brian growing up because i knew my son was doing things your son should be doing and never would. I guess i should have told you more often, i thought about you lots, visiting with your family several years ago i didn't notice that Jamie would have nothing to do with Tom. I am sorry for him that must be very hard, give him a hug for me please. I remember Jamie only wanted his computer and that he wouldn't talk much to me. I remember the articles you sent me about the List, i still have them and keep them forever. You are the best mom and have done a wonderful job with all your kids and i admire you for Jamie. We are the caretakers wheter we asked for it or not and have no choice in life but to be strong when all we want is someone to take care of us for awhile. I wish i could help you darling you are truly your name Joy, your mom named you well... Love you much,

    P.s i worry who will take care of Don if something happens to me as well, know it is not the same situtation but we worry don't we. who will? maybe we can think of a solution together.

  7. Joy, Don't know exactly what to say but wanted to respond to your blog. While the situation with my daughter is way different in many ways, some things I can relate to - especially the frustration and pain and worry that goes with dealing with a child with chronic problems. I admire the love and patience and strength you show. I know it is hard. That is an understatement. You and your family are in my prayers.

  8. My goodness Joy, I had no idea, you were going through this. Thank you for sharing your story. And thanks again for the tickets.

  9. Thanks all. J- yes I remember them growing up at the same time. Also have a nephew the same age. I tried and tried not to let it bother me when the other two were doing the things he should be...driving, dating, etc.... It doesn't do ME any good, but is a natural thing...part of the "I wonder' and what if. Someone asked me once if I could be one person for a day who would it be...I picked Jamie. I just want to know what it is like to be him. How he thinks. feels....
    Marilee yes, it is different but the same. It is so very hard ...the worry and frustration ...
    B-you are welcome!! We will enjoy!