Guilt.
I struggle with it quite often.
When our middle was diagnosed with Von Willebrand ... we knew it had to come from one of us. Turns out, it was me. It also turns out, I passed it onto all 3 of our kids.
Way to go mom, right?
To be fair, I had lived 34 years of my life not knowing I had it. Thank goodness nothing has ever happened to me where it would have been helpful to know ... and thank goodness nothing has happened to the kids where we would have needed to know. So without dwelling, we learned what we needed to, found an amazing oncologist/hematologist for the kids, figured out a treatment plan for those pesky bloody noses that led to her diagnosis and everything has been fine.
So ... Celiac. Everyone was tested after Hulk's diagnosis. Our other kids and my husband within a month of the diagnosis - all negative. My test just came back last week - and was negative. We have not had genetic testing so we are not sure who carries the gene that passed it to Hulk and if our other two children have the markers for it or not. The plan at the moment, unless Hulk's GI orders genetic testing (or insurance wont pay) is that we are all to remain eating gluten regularly and be tested once a year unless symptoms arise.
I won't lie. When my test came back negative I felt guilty all over again. I wanted to be able to blame myself ... because what triggered it is unknown and will always be unknown. I will not ever know when his disease 'turned on'. I just wanted some sort of answer in this whole damn thing.
Every time I see a photo from the before his diagnosis I wonder if he was suffering and just could not tell me/us. That is not a fair thing to do to myself - I know that - but my heart still hurts because I feel like being his mom, I should have been able to tell. I also know that if my husband turned out to be the carrier - I would not blame him like I would myself.
That feeling I call 'mom guilt' is an incredible thing. I think it might be safe to say that we all have felt it and known it at some moment in time.
I will never know when Hulk developed Celiac.
I will never know how long his belly/body was hurting him before the diagnosis.
I don't know if my other two have the genetic markers.
I don't know if my husband does. I don't know if I do.
I don't know if or when any of them might test positive ....
I hate not knowing.
I do know that Hulk has a family that will do anything it takes to keep him safe. He has sisters who pass on treats in the store because he can't have it. If they have a snack with gluten at the house, they know to stay at the table. They know when they are done eating to clean the table/chair/floor (or ask for help in doing so), to wash their hands, and then to use the 'gluten busting spray' on the table for precaution. They know to have me look at any treats they got from outside the house to make sure it is either gluten free or needs to be put in the tote that is out of reach and locked for safe keeping. They go out of their way to make sure he is always safe.
But the guilt? I might always feel it.
I struggle with it quite often.
When our middle was diagnosed with Von Willebrand ... we knew it had to come from one of us. Turns out, it was me. It also turns out, I passed it onto all 3 of our kids.
Way to go mom, right?
To be fair, I had lived 34 years of my life not knowing I had it. Thank goodness nothing has ever happened to me where it would have been helpful to know ... and thank goodness nothing has happened to the kids where we would have needed to know. So without dwelling, we learned what we needed to, found an amazing oncologist/hematologist for the kids, figured out a treatment plan for those pesky bloody noses that led to her diagnosis and everything has been fine.
So ... Celiac. Everyone was tested after Hulk's diagnosis. Our other kids and my husband within a month of the diagnosis - all negative. My test just came back last week - and was negative. We have not had genetic testing so we are not sure who carries the gene that passed it to Hulk and if our other two children have the markers for it or not. The plan at the moment, unless Hulk's GI orders genetic testing (or insurance wont pay) is that we are all to remain eating gluten regularly and be tested once a year unless symptoms arise.
I won't lie. When my test came back negative I felt guilty all over again. I wanted to be able to blame myself ... because what triggered it is unknown and will always be unknown. I will not ever know when his disease 'turned on'. I just wanted some sort of answer in this whole damn thing.
Every time I see a photo from the before his diagnosis I wonder if he was suffering and just could not tell me/us. That is not a fair thing to do to myself - I know that - but my heart still hurts because I feel like being his mom, I should have been able to tell. I also know that if my husband turned out to be the carrier - I would not blame him like I would myself.
That feeling I call 'mom guilt' is an incredible thing. I think it might be safe to say that we all have felt it and known it at some moment in time.
I will never know when Hulk developed Celiac.
I will never know how long his belly/body was hurting him before the diagnosis.
I don't know if my other two have the genetic markers.
I don't know if my husband does. I don't know if I do.
I don't know if or when any of them might test positive ....
I hate not knowing.
I do know that Hulk has a family that will do anything it takes to keep him safe. He has sisters who pass on treats in the store because he can't have it. If they have a snack with gluten at the house, they know to stay at the table. They know when they are done eating to clean the table/chair/floor (or ask for help in doing so), to wash their hands, and then to use the 'gluten busting spray' on the table for precaution. They know to have me look at any treats they got from outside the house to make sure it is either gluten free or needs to be put in the tote that is out of reach and locked for safe keeping. They go out of their way to make sure he is always safe.
But the guilt? I might always feel it.
