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

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 really my baby boy? Were you really there?
ONLY

By Helen Miko 9/25/03

If only I could talk to you If only I could see you If only I could hold you Just one more time If only you were able to smile at me If only you were able to hug me If only you were able to kiss me I would've been so happy If only I could turn back time If only I could see the love in your eyes again If only I could hear you call for me I would be complete But that is not to be These thoughts just tug at my heart My baby boy is an angel in Heaven And Mommy will just have to wait

Don't Turn Away

A child was brought into this world on a cold December afternoon. This was the day Brandon was born. He was to be my godson. I have been a friend with Brandon's mom Helen since freshman year in high school. We survived our adolescence together. We attended the same college together. Our friendship survived the years. We share a love of long walks along the beach, and anything chocolate. We celebrate happy times together, and hold each other's hand through the bad times, and there were many bad times. Times that can break the human spirit. The bad times seemed to come in clusters. First the death of my husband's mom, then Helen's mom, then my mom, and then my dad. In between these hardships were miscarriages, many of them, all occurring within a few years. Finally, a gift was being sent to us. Helen was finally preganant.

This gift of life opened our deadened hearts to once again celebrate together. The gift that helped us understand what many caring voices were saying through our grieving years, that life goes on. Nine months apssed quickly and excitement filled the air when a message left on the answering machine. It was Matt's voice, Brandon's dad, telling us that Helen was in labor. The forty-five minute drive to the hospital felt like hours. As the car drove passed the snow-covered roads I wonderedwho he would look like. Did he have his daddy's brown eyes and mommy's red hair?

My husband and I jumped out of the car and entered the hospital with excitement and anticipation. Brandon's dad was the first person we saw. He was shaking his head talking about this poor little baby who was sick. My mind was so focused on Brandon that his words blurred into kind words of compassion for another family. Then we stopped in front of the nursery. It was not until I peered through the glass window that I realized it was not some other child who was sick, but it was our own Brandon. He is a little boy, with a beautiful round face, ten little fingers, ten little toes, a perfect little boy. A little angel who was seizing. His tiny hands pulsed with each uncontrollable move. His eyes blinked with a jerking motion that pierced my heart. Don't turn away, I convinced myself as tears rolled down my flushed face. Brandon was given one or two days to live, no more.

His brain did not completely form and he began having multiple seizures seconds after his birth. He was diagnosed with Lissencephaly, a word I wished I never heard of. Babies should not be born sick. They are too innocent to suffer. Not our Brandon. My friend, a new mom, was not holding her child in her arms; he was in an incubator fighting for his life. Instead, she was holding my hand. Brandon left the hospital and days turned into months, months turned into years. Years of six different medications to prevent seizures, years of a special ketogenic diet, all to help him stay seizure free. Did I say he averages more than ten a day?

Years of asking God why. Questioning what it was that was keeping him alive. Years of wondering if he suffered with each irrepressible tremble. A smile never graced Brandon's face, he never blew out a birthday candle, he had no muscular control, yet, there were years of hugs, cuddles, and trips. Years to look into his eyes that expressed more emotions than words ever could. His eyes spoke of contentment, happiness, and love. Brandon sits outside and stare at the leaves swaying on the trees, the birds flying across the sky, and the lights that decorated the patio every fall. He goes camping in Florida every spring. And always enjoyed the bright lights of the holidays in the winter.

Brandon happily went for long walks along the beach in the summer. Smiles go across many a passerby's face until his stroller; a customized wheel chair is scrutinized. The occupant of this stroller is a little boy, a beautiful little boy, who is sick. The smiles turn into frowns, and wrinkled eyes give looks of judgment to Brandon's mother as the people pass. The glares fade as the face is turned away. Don't turn away, I want to say out when people lookat Brandon and turn their face. He is just a little boy. A four-year old little boy, a little boy who last breathed on a cold day in March. Held in his mother's arms. With his father and precious little sister by his side. I charge everyone who reads this short story with a task. It is not a difficult task, it does not cost any money, and it does not take away any time. It is simply this. If you see a child with a disability, don't turn away, offer a smile instead.

Love, Mary-Ellen

THREE YEARS

written by Helen Miko (2/25/03)

Yesterday, I realized it was just a week before it was to be 3 years. Three years since you took your last breath in my arms. Three years since you gave me those goo-goo eyes. Three years since I was able to kiss those chubby little cheeks. My arms are still empty. My heart is still broken. How I wish I could erase the images of the end of your life from my mind. They play over and over each year at this time. I try to remember all of the good things we had. How you'd look adoringly at me each morning when you woke up. Even though you couldn't smile, there was never any doubt of your love. There was also never any doubt that you were the love of my life, And always will be. I remember the look on your face each July 4th. Oh, how you loved to watch the fireworks. Daddy would drive us all over the state, Just so you could see as many fireworks displays as possible. I remember how happy and content you were Watching the car races and airplanes with Daddy. Napping on the couch with your little sister, Katie. Taking walks on the beach with me, Nancy and Rere. Oh, how you loved camping too. I think that was your favorite thing of all. You just loved being outside in your butterfly chair Watching the leaves blow, wearing just your diaper. You lived a very full life in just 4 years. More than most live in an entire lifetime. Almost as if you knew your time was limited In teaching everyone all about unconditional love. But, it is still 3 years now. And the angel day always brings such pain and awful memories. Nightmares really. But, I will survive this too. Because I know you never really left me. You are still in my heart every waking moment I have. You are still in my soul with every breath that I take. You are still the love of my life. And Mommy will always love you.


As Thanksgiving approaches, a friend asked me what Brandon has given me. Here is my answer to her question. As for what my Brandon has given me. Whew! That's a tall order. Where do I start? Hmmm, I guess first, he has given me the chance to hold a living angel in my arms and love them forever in my heart. I am truly honored that Brandon chose me to be his mommy. (I know it sounds weird, but I really think he had a choice, and he picked me.) He has taught me what true unconditional love is. He has taught me to not sweat the little things, because the big stuff really sucks. He has taught me how many really good people there are in the world. I met many more wonderful people through him that I never would've met if he hadn't been my son. He reminded me of the pleasures of the simple things in life -- like walks on the beach, looking at the Christmas lights, watching the fireworks, or just sitting in a chair and watching the leaves blow. He showed me that parents of disabled children aren't to be pitied, but to be envied of what they have that the average person will never understand. He taught me that even though you can't walk, or talk, or even smile, that you can touch everyone around you with your love. He taught me that even when the worst does happen, that I will survive it, and be a better person because of it. He taught me to be a more compassionate, less selfish human being. And above all else, he has taught me that even though I may not be able to hold him in my arms anymore, that he is still always with me, and always will be. Helen Miko Nov. 23, 2003