From My Old AOL journal

Here's some stuff I found from my old aol journal. I had forgotten about it. I have so many it's crazy! Matthew was an angel today. He had 4 seizures. On a scale of 1-10 I'd say they were 7. Still no myoclonics in the morning!!! I think he was just tired. WE did a LOT of traveling today. He had a doctors appointment with the endochrinologist. He seems amazed at how well Matthew is doing. He is still only on Levoxyl for a low to normal thyroid. He's 28 lbs and 3 ft tall!!! He's still on the growth charts. He's doing well and we were told to keep up the good work.
Here it is. I read it and was impressed with myself. lol

My Journey with Matthew is much like Homer's Epic Poem, The Odyssey. I was helping my son in English Literature and had to help him read it. At first I thought Oh my Lord, How will I ever be able to read this stuff! The more I read the better I understood it. Everyone has their own journey through life. Some are easy and some are difficult. The word "Oddyssey" comes from the greek word Odysseia. It means any significant and difficult Journey. I''m thinking of changing the name of my journal to Peekaboo Man's Odyssey. What do you think? Leave a comment and I'll make my decision after I have read all comments.

It is truly a very difficult journey. It's like you are fighting a useless battle with something you know you will never be able to beat but you keep going and keep fighting and pushing. Even though you know what the ultimate end will be. The good thing is that during the fighting and pushing you learn a lot, meet a lot of people and you come to understand what life is all about. You have a lot a happy times and sad times during the fight. You learn to lean on your faith in God more. Here's something from The Oddyssey. You may find it boring at first, but if you think of yourself as "Homer" and apply to your own life, you might get some meaning out of it. (Maybe not "every" word but this one really made sense when I thought of myself as "Homer").




Many cities did he visit, and many were the nations with whose manners and customs he was acquainted; moreover he suffered much by sea while trying to save his own life and bring his men safely home; but do what he might he could not save his men,

Good Night



If you have not visited my faces of angels link you should! Just go to the link box at the very top of this page and click on it. Here is some of what is on it.

Faces of Angels

I wanted to share some Angels, living and those who have already gotten their wings with all my friends that read the Journal. The First one I’m sharing is very special to us. When we joined the Yahoo support groups, Helen was the first member that really helped us a lot. Matthew was about 4 weeks old when we joined. She offered us lots of support and even called long distance to say hello and see how Matthew and the family were doing. Unfortunately, we didn’t get to meet Brandon face to face because he had already gotten his angel wings before we had joined the group. Helen chose to stay in the support groups and we are all glad that she did. She has given us some great advice concerning questions we have about our special children. The more I read about her son Brandon, the more I felt I had missed out on things when he was here on earth. He even favors our Matthew in a lot of his Pictures. Even though I never met him or saw him face to face, I feel like I did know him and I can see him when I look into Matthew’s face. Helen uses "Empty Arms" in her email addresses and I know somewhat of how she feels because I know that will be how I feel when Matthew gets his wings. Here are some wonderful poems she sent me to share with you and don’t forget to look at the beautiful pics!





WHEN I WAS 25 (By Helen Miko)

As I approach my 45th birthday, I think back upon what I thought my life would be like when I was 25. I can't help but to be saddened by some of the differences, and proud of others. When I was 25, I thought at 45, I would be married with 2 children-- a boy and a girl of course. Then, there was reality -- yes, I am happily married, but I've been pregnant 5 times, and only have one living child. And watching the torture my precious little boy endured is more than I ever could've imagined. But, in this same situation, I am also very proud -- proud because I have a healthy, beautiful little girl that I would die for. And also proud that I was given the chance to know my son, when no doctors thought that ever would've been the case when he was born. When I was 25, the thought never crossed my mind that I would ever have a handicapped child. After all, there was no children born with problems on either side of the family. But what I found out was what a blessing having Brandon was. He taught me more in his 4 years, than ever could've been accomplished if I never had had him. He also taught me how strong I really am when I have to be. You see, I used to be shy around a lot of people -- especially peers and the medical field. What I found is that I could be a ferocious 'Momma Bear' when I needed to be for my Brandon. I not only fought the health care and educational systems for what was right for him, but I found out that I could be a formidable person to deal with if you said or did anything against my babies. I also have learned that I have the strength of the spirit when I need to have it. I dealt with what Brandon's seizures, and all of the other things that went along with the lissencephaly gave our family. Who had time to cry about it? I had to deal with it for my baby boy, and that's exactly what I did. I was also totally devastated when he died in my arms. Something that will haunt me until the day I die. But I also learned how strong my spirit is; as I endured all of the pain and anguish that went along with grieving for your child, and I survived it. I didn't fall into a heap and die -- I was strong enough to live with the pain. I found other ways to get through my grief like planting an angel garden for all of the little angels that have touched my heart over the years. I've learned how very important it is that they are kept alive in our hearts and souls. I wrote poetry, and gave talks for Hospice in the attempt to help others through their pain as well. I never would've thought at 25, that my whole focus on what is important in life would change. At 25, I forged an entirely different path. I was teaching, and thought that I would never want to be a stay-at-home mom. What I found out is that mykids are more important to me than anything else in this life, and I can't think of anything more fulfilling than being home for my child and being there for her in her childhood, as my mother was for me. (I was lucky in that I had a very good teacher in my mother.) When I was 25, I thought my parents would be alive to bounce my children on their knees. Reality is that Mom died from cancer years before my children were born, and my dad only knew my daughter for a few short years. But, I am also proud in the fact that I try to instill the important things in life to my daughter that my parents instilled in me. So, even though they are not here with me in person, they will always be with me. And I am so thankful that my husband and I love each other dearly. I have seen so many friends relationships fall by the wayside. I really appreciate what a strong relationship we really have. Our love has endured more than most ordinary people have to go through. And we still are here 21 years later loving each other. So yes, life is very different at 45 than I thought it would be at 25. But, is it a bad thing? No, it is just different -- and I believe in a lot of ways I am actually a better person than I thought I would be at 25. Because instead of the superficial things that meant so much to me at 25, I realize at 45, that they are really nothing. The important things are your family, and the most important thing you can say to your husband and kids when they go to sleep at night is 'I love you'. After all, what is more important. written by Helen Miko (10/6/04)


WERE YOU REALLY THERE

By: Helen Miko 9/26/03

It seems so long ago I look at your picture and question myself Did I make you all up in my mind? Were you really there? Did I really hold you? Was it me who kissed those chubby little cheeks? Did you really nuzzle into my breasts each night? Were you really there? Did you really breathe and your heart beat? It just seems like a dream so long ago Could I really smell you? Were you really there? Was it you who had all of those seizures? Was it you who had to eat with a tube? Was it you that had to take all of that medication? Were you really there? Were you the reason we got to know all of the doctors? Were you the reason I spoke for Hospice? Were you