Friends often ask me, "How do you do it?" Before I can answer, they often answer their own question, "I don't know how you do it." I honestly don't know how I do it. What even is "it"...it's a lot.
Having a child with a chronic health issue is the most challenging thing I have ever gone thru and continue to go thru. Every day. Every party. Every play date. Every meal. Every label. Every bite. Every single damn ingredient. I would be lying if I said it's easy. It's incredibly challenging to be that parent.
You see Jahan, all I want for you is normalcy. I try so hard every day to fight for that. In your school, your classroom, with your friends, your family, at the table, at the restaurant. I yearn for this for my baby. We DO NOT believe in wrapping you in a little bubble, requesting food bans, which would impact so many others. Accomplishing this means, you are around foods so close in proximity to you, that it could do serious harm, as we have seen. As your parent, I am trying to keep you safe, that means I feel the burden, the stress, the what-if. Trying to educate others, I am often viewed as overbearing, overreacting, a helicopter mom and the list goes on, mostly negative. It is a hard journey. Co-parenting is equally challenging. Daddy and I will continue to be diligent in maintaining your safety and also your quality or life, including relationships and experiences. Then there will be new challenges that OIT will bring. Many in fact. For starters:
Having a child with a chronic health issue is the most challenging thing I have ever gone thru and continue to go thru. Every day. Every party. Every play date. Every meal. Every label. Every bite. Every single damn ingredient. I would be lying if I said it's easy. It's incredibly challenging to be that parent.
You see Jahan, all I want for you is normalcy. I try so hard every day to fight for that. In your school, your classroom, with your friends, your family, at the table, at the restaurant. I yearn for this for my baby. We DO NOT believe in wrapping you in a little bubble, requesting food bans, which would impact so many others. Accomplishing this means, you are around foods so close in proximity to you, that it could do serious harm, as we have seen. As your parent, I am trying to keep you safe, that means I feel the burden, the stress, the what-if. Trying to educate others, I am often viewed as overbearing, overreacting, a helicopter mom and the list goes on, mostly negative. It is a hard journey. Co-parenting is equally challenging. Daddy and I will continue to be diligent in maintaining your safety and also your quality or life, including relationships and experiences. Then there will be new challenges that OIT will bring. Many in fact. For starters:
- Will we all relocate to California? The thought of separating you from Emrys breaks my heart.
- Will we stay in Maryland and travel back and forth to California every few weeks for the duration of the treatment that takes years?
- Will you be successful with this treatment plan? Will we be successful?
- How will we manage your schooling while in treatment?
The list goes on and on. I don't know what we will do or how we will do it, but we will do it and you will ride off into the sunset, free from these shackles.
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