This is our son. Ive added pictures from today. It was Factor day for us. We are still accessing at the hospital through IV. I was accepted to this group in May of this year, and I cant express how grateful I am for all of the help, support, advice, and understanding in this group. Its one of the few places where I feel like people actually understand our story, our journey, our battle. And I understand their story. My son is now 21 months, diagnosed with severe hemophilia B less than 1%. He went un-diagnosed until age 16mths. Our journey started with one of those life-saving-accidents. At that time, I felt like my world literally crashed down on top of us. Since then, I still have days where I feel cheated, angry, envious to others and their perfect lives just to name a few feelings. And I feel my son has been cheated of a normal life. I have more pity days then cheerful days, but Im getting there. Its only been 3 months. I have learned how thankful I should be. How blessed we really are to have him in our lives, and us in his life. It isnt easy, as most of you know. We are trying To avoid a port if there is anyway possible. Im just not mentally able to accept that device being inside his chest. But like I said, we are getting there. I just wanted to share with the group a little about us, vent a little, reach out, and offer my prayers To anyone else battling this special disorder. That being said, our little guy has become my super hero. We like to call it hemo power , and hes one special little guy!
Posted on: Tue, 19 Aug 2014 02:31:13 +0000
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