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Infusing Love: A Mom's View - A blog dedicated to mothers of children with bleeding disorders.

When my daughter, Ashley, and her husband announced their pregnancy it was one of the happiest days of my life. On the day of Landon’s birth, I was so excited and could not wait to hold that little bundle of joy in my arms. After a very long day and night, Landon finally arrived into this world. His daddy carried him to us in the waiting room, and he was absolutely beautiful.

Then our roller coaster began.  Landon was born with a huge hematoma on his head. After his birth he was transported to Duke Hospital, where we learned he had hemophilia. At that time, I did not know what hemophilia was. No one in our family had hemophilia, so we were stunned and in complete shock. As a teenager, I had heard my mom talking about a man down the street having hemophilia. She often referred to him as a “free bleeder,” but I never questioned what it meant.

I had many concerns about caring for Landon at first. I am always afraid he will get hurt or have a bleed while in my care. My daughter, along with medical professionals, have helped to calm my fears. I try and treat him like any other child but with a little extra caution.

Throughout Landon’s young life, I have supported my daughter and her husband as much as I could. I have held him during his blood transfusions, and while the nurses tried to find veins in his head (because the veins in his arms “blew”). I was there when he had to have ports placed in his chest. I have walked many miles in the hospital pulling a wagon with Landon inside, hooked to a pole with factor going into his body. I am his babysitter during the summer while his mom and dad are at work. My husband and I go over to Landon’s house every Saturday night to give his mom and dad a chance to go out. We are very protective of him, but also know he has to be a child. We have to be alert, all the time. We do not want him to get hurt or have a bleed on our “watch.” I know he has limitations but I want him to be as normal as possible. We play, we laugh, we worry, we cry  — but I also know Landon was born with hemophilia for a reason. I am truly honored that God chose me to be Landon’s Nana. He is such an inspiration to our family.

Shirley_Moms BlogI know there will come a day that I will have to give Landon an infusion. Ashley is already preparing me for that day. I watch her closely and hope I can access his port as easily as she does. I have adapted very well to Landon’s style of care. I am not as fearful as I once was and I have learned a lot about hemophilia, especially how to identify bleeds. I take one day at a time and love Landon unconditionally.

Landon’s parents are an awesome team. They work together and give Landon the best possible care. Ashley has done so much research on hemophilia and shared with me. There have been days and nights of total helplessness, tears, frustration, and worry about Landon’s future. There have been weeks, birthdays, and spent in the hospital. I remember the night Landon’s dad and I pulled him in a wagon for hours because he would not go to sleep. When we stopped he would cry and wake up the other babies. I remember holding Ashley and just letting her cry as she asked God why!

There were also great times. Landon got to sit in the Duke Life Flight helicopter and meet the pilot. He got to meet some of the Duke basketball players. He has a signed poster of the Duke players and a personal letter from the coach. We have been to Myrtle Beach together; taken Landon to see Santa, and even went to Disney World this past summer. Seeing the world through his eyes has been a pure joy!

We have faced many obstacles together and I would do it all over again. Even though our life has been a roller coaster ride, it has been a joyful one. Landon has made us realize how fragile life is. Moments with Landon are so very special. We wouldn’t have him any other way. He is a Godsend that has brought our family closer together. If you did not know he had hemophilia you would never guess. He has the most amazing personality, attitude, and sweet spirit. When I am with him my world is complete. Landon is not only my hero — he is my heart!

Shirley Horne lives in North Carolina and is mom to Ashley, and grandma to Landon, (4).

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**Note: “Infusing Love: A Mom’s View,” is a blog collection of personal opinions and a representation of individuals experiences. While extensive efforts are made to ensure accuracy of the content, the blog entries do not represent HFA or its Board of Directors. The blog is also not intended to be construed as medical advice or the official opinion/position of HFA, its staff, or its Board of Directors. Readers are strongly encouraged to discuss their own medical treatment with their healthcare providers.

 

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