Making Memories

Sunday we traveled up north to Dayton for our annual pumpkin carving. This event is one of my favorite fall activities. I really looked forward to the event this year because we've been taking it easy with not a lot of holiday adventures. I love spending time with family eating, chatting, and carving some good ol' pumpkins. Jocelyn brought a friend this year which I know she really enjoyed. They stuck together enjoying their time being friends. They both did most of the fun themselves. They did need some help with carving out the stencil but for the most part they were on their own.
Logan and Mommy did our pumpkin together. Logan's favorite part was carving the pumpkin. He said he liked cutting it, giving the pumpkin eyes, and a mean looking mouth. I would have to say that he also enjoyed cleaning out the pumpkin guts. As you can see most of the pictures are of him with his hand inside of the pumpkin. Boys will be boys!
I feel extremely blessed to have a great family that loves to be together. Together is a wonderful place to be.

Message from God

I believe I get several messages from the good man upstairs. He is in my heart and talks to me. It may come to me in a letter I have recieved from someone, through people themselves, or even just in a thought.
We try to say dinner prayer during every meal. During our dinner prayer we allow the kids to add anything they would like to say or thank God for. Almost every prayer Logan thanks God for his health. "Fank you Gwod for my helf." Spoken to you by a 5 year old. It is very sweet and it's also amazing that he knows to be grateful that he is healthy.
Bill and I always look up at each other during the prayer with sad eyes and disappointed looks. After a conversation that we had together. We realized that it's a message. God is telling us he is healthy right now and not to be sad because Logan's not as a matter of fact he is grateful.
I love the messages. They give me inspiration and hope. Thank you God for walking with us, letting us know that it's OK, and to live in the moment. Your love is amazing.

A worried little girl

Do you remember being a child and worrying about being embarrassed or what people might think? I sure do and Jocelyn is no different. Although she is quite wise for her little mind she is still a child. During Tuesday's dinner conversation we were talking about Logan getting his nightly leg braces. Jocelyn got a look on her face that said I don't like this. Me being the loving/caring person I am started encouraging her to talk about the look she was displaying. "What's wrong Jocelyn?" "Are you bothered?" I was able to read that she did not want to let out what she was thinking in front of everyone. So I told her that we would talk about it later.
That evening while tucking her into bed for the night she opened up saying, "Mommy I don't want to have to walk Logan to class in a wheelchair. It will embarrass me. "I then ask her "Do you love him?" Her response with no surprise to me was YES. "Then that is all that matters." "When it happens your love for Logan will be what you care about."
I believe that Jocelyn will be very protective of that little guy. Logan is her brother and I hope she won't allow anyone to embarrass her. Love will prevail.

My first experience of Welcome to Holland

Everyone you know is busy coming and going from Italy...and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very, significant loss.
That phrase became very clear to me during a conversation last night. I became sad and was unable to hold back my tears. I had to leave the conversation and go to an alone place and just cry. It was hard to listen to the talk about a sporting event and laughter about how the child's technique of running was. All I could think was at least he can run and is able to play sports that involve running.
"My boy has muscles, large ones at that, and those calf muscles are going to lead him somewhere." "What sport can we put Logan into in order to optimize the quality of his of his physical asset?" Little did I know it wasn't a physical asset. It is actually called calf pseudohypertrophy a large word for fat replacing damaged muscle. We will find an activity for Logan to do that will make him happy. His happiness is all that matters and he will find it.
As for me I hope to learn how to spend my life not mourning the fact that I didn't get to Italy, to only miss the very special, the very lovely things of Holland.

A gift

The previous post titled Welcome to Holland was a gift I got in the mail yesterday from a woman who's name I got from the MDA. I'm happy that God gave me the courage to call her. Then also sent a message to me through her. I definitely related to the message and at the end it gave me hope.

WELCOME TO HOLLAND - A MOTHER'S COURAGE

I am often asked to describe the experience of raising a child with a disability-to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this... When you're going to have a baby, it's like planning a fabulous vacation trip-to Italy. You buy a bunch of guidebooks and make wonderful plans. The Coliseum, The Michelangeo David, The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting. After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland." "Holland?!" you say, "What do you mean, Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy." But there's been a change in the flight plan. They've landed in Holland and there you must stay. The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence famine and disease. It's just a different place. So you must go out and buy new guidebooks. And you must learn a whole new language. And you will meet a whole new group of people you would never have met. It's just a different place. It's slower paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around...and you begin to notice that Holland has windmills...and Holland has tulips. Holland even has Rembrandt's. But everyone you know is busy coming and going from Italy..and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That's what I had planned." And the pain of that will never, ever, ever, ever go away...because the loss of that dream is a very, very, significant loss. But...if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things....about Holland. Emily Perl Kingsley

Boys and Girls weekend

We had a great weekend. Bill took Logan on a all boys camping trip at Eastfork State Park. I know that they had fun because Logan came home looking like he took a dirt bath. There were a lot of kids there he played with and he said his favorite playmate was his cousin Tyler. Tyler is very good with younger kids so I'm sure he took very good care of my little guy. I got to have Jocelyn all weekend and we did what girls do. Watched a movie, ate food, and talked with our friends. Saturday morning I took her to a clinic sponsored by Bootsy Collins. A former Ben-gal cheerleader put on the clinic. It was a very nice program and it was fun watching her cheer with her friends. Logan started his daily steroid on Saturday the 8th. So far so good. The short term side effects make me nervous. Being on the steroid will increase his hunger which will cause weight gain. And if you know Logan he obsesses about food and when you don't give him what he wants to eat he gets very upset. Dr. Wong calls it excessive energy intake. It will be one of the many struggles we will encounter with him in order to keep him as healthy as we can. Another everyday obstacle I'm concerned about will be his mood swings another side effect of the steroid. Logan has never been one to be able to control or handle his emotions. I hope to be able to do my best to understand but also to discipline his behavior. The long term side effects of the steroid are manageable and he will be monitored for those. The purpose of the steroid is to keep him walking longer. I talked to a mother who's name I got from the MDA and she told me that her son is now 15 and was diagnosed at the age 2. He is taking the same steroid as Logan and he is just now getting into a wheelchair. That helped me feel a lot better about Logan taking a daily dose of steroid. Anything to keep him as healthy as we can. Please keep us in your prayers as we go through this journey to be patient and have the strength to deal with our daily struggles. Thanks for reading.

What do you do

Do you take the advice of a wise 7 year old or do you just accept the reality of our new life? One of the many hard questions I'm sure Bill and I will encounter through our new journey. Logan has been invited to an annual fall party through the MDA. After reading the activities to him, Jocelyn who seems to be quite wise for her little mind says "Mommy he can't go to that it will scare him." Does she get it or is she the one who is scared? I'm just lost for words. I want the best for both of those turkey's. I'm confused and scared on what is best. I want to make the best decision for everyone. I don't want to hide him from the reality of his condition but the fearful wisdom from Jocelyn definitely made me think. I think she is right. A message from God working through the eyes of a child.

Our New Diagnosis

What do you do when you find out that your child has been diagnosed with a condition that is going to change the life you had imagined? Well, I got mad. I got mad at the good lord who blessed me with this beautiful child. I could not understand why he would do this to my little boy. All I wanted was to be able to take this all away from him and for it to just go away. I had a hard time accepting that my precious baby boy has this condition. I thought "If I accept this then I'm saying that I'm OK with it and I'm not, I want different for him, I don't want to see him suffer." Oh god he is mine and why? One day I came home after dropping the kids off at school dropped to my knees and just sobbed. I began praying to God asking him the questions that I had in my mind. I was pacing the house just crying asking him the same questions over and over. Then I began to ask him for strength. At that moment I needed his help. I knew that I was not going to be able to do it on my own. I needed an angel to walk with me. I know that he was listening because now I believe that he has sent me an angel, he sent me Logan. My precious baby boy. Our rock. Our anchor. Logan is going to teach our family more about life then we will ever be able to teach him. I hope to be able to tell our story in a realistic but positive way. I'm hoping that our story will be an inspiration to someone else someday.