Happy Anniversary
Today is Shelbie's last IVIG infusion for 2011. It's hard to believe that we have been at this for just over a year. Each month, it gets harder and harder for them to find a vein. Today was just as hard. It took two nurses numerous times before they could get the IV started. I am hoping we can avoid a central line but her veins are so scarred and chemo therapy changed the size of them it may be our last resort. I am glad that they got her in today. She has been sick since last Saturday and really sick over the past 24 hours. I was afraid I was going to have to take her up to the ER last night so this infusion is actually a relief of sorts.
January, we will start off the new year with another infusion and a new deductible. Oh Joy!
So, getting to my point of this post, this week marks the 12th anniversary that my kids were diagnosed with Shwachman Diamond Syndrome. Not a 'happy' anniversary, just an anniversary. No matter how long I live, I will never forget that day. I can still hear the doctor, his words; bone marrow failure, transplant, the statistics he threw around like a ping pong ball. They bounced off my already numb mind. The words felt so real and cutting yet distant and impossible at the same time. I remember telling myself, "That happens to other people, it won't happen to us. We have a mild version of this disease."
As time marched on and I became 'comfortable' with our new routine of medicines, blood tests every few weeks and fevers of unknown origin, we found our new groove and I thought, "This is going to be okay." For some reason, I never thought they would get any sicker than they were 12 years ago and as long as I could manage that, I would always be able to manage this disease. I don't know where those naive thoughts came from but I was sorely mistaken.
Now, I wonder how much longer I will be able to have the patience, knowledge and resources needed to continue to take care of them. This year has taken its toll on me in so many unmentionable ways. Everyday seems a little harder. New symptoms are cropping up on a weekly basis. It's hard and mostly overwhelming.
Regardless of the struggle, we hang in there. Sometimes, like old Humpty Dumpty, we fall, the King's horses and all his men come rushing in, patch us together and set us back on the wall.
January, we will start off the new year with another infusion and a new deductible. Oh Joy!
So, getting to my point of this post, this week marks the 12th anniversary that my kids were diagnosed with Shwachman Diamond Syndrome. Not a 'happy' anniversary, just an anniversary. No matter how long I live, I will never forget that day. I can still hear the doctor, his words; bone marrow failure, transplant, the statistics he threw around like a ping pong ball. They bounced off my already numb mind. The words felt so real and cutting yet distant and impossible at the same time. I remember telling myself, "That happens to other people, it won't happen to us. We have a mild version of this disease."
As time marched on and I became 'comfortable' with our new routine of medicines, blood tests every few weeks and fevers of unknown origin, we found our new groove and I thought, "This is going to be okay." For some reason, I never thought they would get any sicker than they were 12 years ago and as long as I could manage that, I would always be able to manage this disease. I don't know where those naive thoughts came from but I was sorely mistaken.
Now, I wonder how much longer I will be able to have the patience, knowledge and resources needed to continue to take care of them. This year has taken its toll on me in so many unmentionable ways. Everyday seems a little harder. New symptoms are cropping up on a weekly basis. It's hard and mostly overwhelming.
Regardless of the struggle, we hang in there. Sometimes, like old Humpty Dumpty, we fall, the King's horses and all his men come rushing in, patch us together and set us back on the wall.
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