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

With the holidays approaching and this year coming to a close, I have found myself reflecting on the little things I am most thankful for in this community. Micah and I are truly blessed and thankful to have the people and support we have found — all because he has hemophilia.

Too often we get so caught up in the hustle and bustle of daily life that we tend to take some things and people for granted. In October, I was reminded of how important it is to be part of an active hemophilia chapter. Even though we have always lived in a different state, the people at the Hemophilia and Bleeding Disorders of Alabama (HBDA) took Micah and I in, and have given us more support than anyone could ever hope for. I know without a doubt that if we ever needed anything, we could call them and they would be right on it and pull everyone together that they could.

To us, being part of a chapter feels like we are blessed with a second family. The volunteers of HBDA have watched Micah grow up. They have witnessed his highs and lows, his mischievous ways as a little boy at Camp Clot Not, taught him to infuse, and rewarded him when he finally did it. They continue to encourage and empower him in everything he does. They remind me that it’s hard sometimes, and they recognize my efforts to try and be a good mom. He has made bonds with other his blood brothers that he will never forget. We will always have their love and support to get us through whatever comes our way. I have shared many hugs and tears with these people and am so grateful they are part of our lives.

micah_kelly_Infusing LoveI don’t think people realize the time and effort that chapter volunteers put into events. We went to Camp Harvest in October for our family camp weekend, which was held over the weekend of Halloween. HBDA volunteers and staff arrived on Wednesday to start setting things up and getting ready for families arriving on Friday night. They had a couple small moving van truckloads of decorations, activities, and snacks. Countless hours were put into planning that amazing weekend.

I don’t actually know how many folks they had setting up, but I can tell you it wasn’t enough for all the work that was put into it. Our HBDA folks create an amazing haunted hayride every year with so much theatrical set up you’d pay to go through it if it were available in your town. It’s really that impressive! Unfortunately, this year there was bad weather moving through as they prepared. They had already had set up for our outdoor carnival themed activities, but hustled during dinner time to finish getting things ready for the hayride, before everyone and everything got wet. They were pulling double duty and didn’t even get to eat. Not one volunteer or staff member complained. These folks are the most unselfish people I have ever known. They always put our kids first and do all they can to make sure each family knows they are welcome, have fun, and are loved. Micah and I drive five hours to see our Alabama hemophilia family and it is worth every minute and mile. I look forward to that reunion every year.

In times like these, reflect on the blessings and people in your life. Tell them what they mean to you. I am thankful for all of my hemophilia family nationwide. This world needs more love, compassion, encouragement, prayers, and hope. Micah and I find that in our bleeding disorders community with every interaction. We are truly grateful.

I hope 2016 brings each of you the comforts of a home chapter like mine, access to treatment, and loving people to support you in this bleeding disorders journey of life. Sending our love, hugs, hope, and prayers for a safe, healthy, and Happy New Year in 2016!

Kelly lives in Mississippi with her son, Micah, 13.

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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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