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Waiting to Breathe - Outside The Box

Waiting to Breathe

Waiting to Breathe

22 minutes. A man from Denmark set the Guinness World Record by holding his breath for 22 minutes. That is about 20 minutes longer than the average person can hold their breath (under water). But it’s currently about 6 months (and counting) less than I have held mine. I’m not trying to set any records. I want to breathe. And I’m afraid to breathe.

We had a difficult summer in our home. Our beautiful four year old daughter became very ill very fast. The fact that she became so ill was scary enough, and when a week in the hospital being cared for (and I use that term very loosely) brought us absolutely know resolution I was out right petrified. Thanks to mother’s intuition and some helpful information from one health professional, we were able to finally get our daughter the help she needed and get her on the road to recovery. Three months later she is doing remarkable.

Watching my daughter suffer without knowing exactly how to help her, for months, was the most difficult experience of my life. I slept very little.  I went to work (when she was well enough) and went through the motions of living a life.  But I wasn’t really living, at least not for me.  My daughter’s illness was all consuming, for all of us. Early on I may have cried a time or two but then I switched gears and, right or wrong, put very little thought into my own feelings.  I switched into warrior mode because that was what my daughter needed from me. I spent hours and hours researching the condition that we suspected she had. The local medical community had a very distinct lack of knowledge about this condition so I had to do the leg work. I read absolutely everything there is to read about it. I know each and every symptom. I could write a paper about treatment options. I can tell you things about this condition that I am willing to bet your doctor is clueless about. Everything I did during that time was focused on getting my daughter better.

But she’s doing better now so why am I still holding my breath? Because it’s very possible (I hate to say it but actually likely) that some day her symptoms will return and we will go down this path again. We don’t know when it might happen or how bad it might be. We still have no local medical professionals that are able to help. Every single day I go to bed both thankful for another healthy day and fearful of what might come tomorrow.  I understand that from the outside looking in it might seem that I am consumed by the  uncertainty. But I’m actually not. I am so grateful that my daughter is doing well now and I savour every healthy and happy moment. I really do. But so far I have just been unable to allow myself to get too comfortable.

What happened to our daughter, to our family, was traumatic. I’m not being dramatic here. For months my daughter was lost and at one point I wasn’t really sure how or if we would get her back. But we did. We got her back. Our amazing little girl came back. And I have completely avoided letting this all sink in. I fought for her. I am now still fighting for her and for so many other kids like her. I don’t want to stop. I don’t want to breathe. I’m afraid that once I do I may become unraveled. I’ve been wound so tight for so long that the prospect of becoming uncoiled is a little scary.  I think I need to ease into it. I’m not really sure how to go about that, or even if I can.

For now I will keep up the fight to bring awareness for PANDAS/PANS. I will continue to hold the doctor’s who would not help her accountable. I will embrace the healthy place my daughter is in. Maybe next year I will breathe.


This article has 2 comments

  1. If you need an oxygen tank, I will give you one. If you need support, I will hold you up. If you need a friend to listen, I am all ears.

    I wish that I could make Molly all better forever but I can't. In the meantime, I am here for you and your family savouring every day of health and happiness for both of us.

    Besos Sarah.
    My recent post Adoption Does Not Define Me #AdoptionAwareness

  2. I can only imagine how scary and frustrating it must be to try to find answers when dealing with the a very sick child. We assume that doctors know best but in my experience some do and others don't. They have a general at best knowledge of many illness and we have to be avdocates for our own and our childrne's health and best interests! Kudos to you for doing that and the research to know what was best for you! It is tenacity that can make all the difference! 

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