They don’t tell you

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They don’t tell you…

They don’t tell you that just 2 weeks to the day, as today is, the pain is often more intense than the days immediately following.

They don’t tell you that you may be afraid to go into the room where your beloved died.

They don’t tell you that when you do finally brave going into the room to collect any medications to be returned to the pharmacy, seeing those medications which helped your beloved at the end of their life will send you into a complete emotional breakdown with uncontrollable sobbing.

They don’t tell you that as you pack the boxes and the bags full of unused, now unneeded, medications which kept your beloved healthy and alive as best they could, while tears stream down your face, will leave you with yet another layer of emptiness…as empty as the cupboards now stand.

They don’t tell you that spending nearly 18 years working, fighting, sacrificing all you are and doing all you could to keep your medically complex, profoundly disabled child alive, will mean absolutely nothing to the officials within your country as they throw you into the depths of financial despair while you’re drowning in the depths of complete emotional despair.

They don’t tell you that most bereavement literature is not geared toward your particular journey…that of being a parent to a profoundly disabled and/or medically complex child…and so the reading leaves you feeling just as misunderstood and unheard as the previous years of such a special journey had done.

They don’t tell you that the horrific images of the last days will come racing through your mind, invading the fleeting moments of rest, catapulting you into anxiety attacks as you work to rid the thoughts of the end from your weary mind.

They don’t tell you that after nearly 18 years of being a carer, you can’t even begin to comprehend how to be anything else again. Certainly not after just 2 weeks.

They don’t tell you how to now survive.

3 thoughts on “They don’t tell you

  1. Debbie

    I have been following your blog for a while now. I have feared the moment of your loss, just as I have feared my own eventual loss. My son Lee is 39 and was also born with CMV infection, he also has a brother 5 years his younger. I am also a single mom, working 24 hours a day to care for my son. I have felt your pain, and understood your struggles both financial and emotional. People just don’t get it. The day we lose our income we also lose our child. Either one is enough to tip us over the edge. I find comfort in thinking of my years caring for my son as “Babysitting for God”. We both were blessed to have the privilege of having a child like this, for God trusted US with their care. I pray for comfort for you and Declan. You are an amazing Mother. You did a wonderful job. Now the job is done, and his memories will sustain you forever. My heart and love go out to you and Declan. 🙂

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  2. Kevin

    They don’t tell you that tomorrow will be worse. They don’t tell you that no matter how hard you try to be strong for those you love or how hard They try to be there for you we are all broken, blind and useless. When Sarah died a hole family died. Whatever we become will be very different. Take care of your self Tracy.

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