You realize how great things have been trucking along when they start to go south. We have been so lucky lately with Cecily's health that I think we started to take everything for granted - a little. This week we were reminded how far she has come and how much pain she endured during her first 20 months of life. Looking back I am not sure how we made it. Over the last two days our little pumpkin has had her share of tears - too many. She is hurting and we have been unable to provide her as much relief as we would like. We hug her and pace with her and sing and dance and play... but we can see her little face fighting to smile. It is on these days that I hug Noah tighter and let him have an extra show or a special treat. Cecily has been in my arms for most of the day. ( I do love the cuddles). But I hate to see her in any pain and when I see her biting herself, cutting her own skin and wincing with some small tremors my entire stomach churns into knots and I want to scream, "this is not fair!"
But I think I hate that much phrase almost as much as I hate people using the "R" word or referring to their children as not normal. Life isn't fair and some days are better than others. We hate to see Cecily, or any child, in pain but we am pretty darn sure that she is a blessed child. She has a family that smothers her with love. She is lucky and we are lucky to have her in our life.
So we will not complain. We have a few rules in the Ackerly house. We are not quitters, we don't whine and we do what we say we're going to do. They are simple rules but they are teaching our children respect, integrity and to never give up on anything. We will never give up on Cecily and so today we fight harder for find out why this is happening. We have another genetic test coming down the pike and perhaps they'll finally be able to diagnose Cecily with something that may be treatable. We've been down this road 5 times... so we know not to get too caught up in the waiting game. A test result will not tell us anything we don't know. We are lucky to have Cecily and she is a special gift! But maybe... just maybe it will help us care for her better.
Over the last two weeks Cecily has been poked, prodded, tested, and seen by her entourage of Doctors at Children's. On all accounts - the reports have been positive. We know there is no crystal ball for any of us - and no future is guaranteed. So hopefully Cecily will weather this storm without a hospital admission this weekend and her smiles and giggles will return. We know she is making lots of progress and for that we are grateful.
Onwards and upwards!
But I think I hate that much phrase almost as much as I hate people using the "R" word or referring to their children as not normal. Life isn't fair and some days are better than others. We hate to see Cecily, or any child, in pain but we am pretty darn sure that she is a blessed child. She has a family that smothers her with love. She is lucky and we are lucky to have her in our life.
So we will not complain. We have a few rules in the Ackerly house. We are not quitters, we don't whine and we do what we say we're going to do. They are simple rules but they are teaching our children respect, integrity and to never give up on anything. We will never give up on Cecily and so today we fight harder for find out why this is happening. We have another genetic test coming down the pike and perhaps they'll finally be able to diagnose Cecily with something that may be treatable. We've been down this road 5 times... so we know not to get too caught up in the waiting game. A test result will not tell us anything we don't know. We are lucky to have Cecily and she is a special gift! But maybe... just maybe it will help us care for her better.
Over the last two weeks Cecily has been poked, prodded, tested, and seen by her entourage of Doctors at Children's. On all accounts - the reports have been positive. We know there is no crystal ball for any of us - and no future is guaranteed. So hopefully Cecily will weather this storm without a hospital admission this weekend and her smiles and giggles will return. We know she is making lots of progress and for that we are grateful.
Onwards and upwards!
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