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Every day is Undiagnosed Day in our house

Every day is Undiagnosed Day in our house

Why this obsession with the daily post? I can even see the postman’s van parked in the side street by our house so, every time I go up or downstairs, I can check if he’s still on his round or not. When the van has gone and we have no mail, my heart sinks.

Another day with no answers. For answers are what I wait for, every single day. I’m waiting for the letter that may one day reveal what is wrong with my daughter or rather the why, what and wherefore. I’m starting to understand the symptoms and the impact on her and our lives, but we still lack a reason (why? Why her?) and a prognosis (what does her future hold?)

Sometimes a letter does come. A clinic letter or a report from a recent appointment and it will contain a new piece of information. “Severe developmental delay” was one day replaced with “profound developmental delay”, and reference to an “evolving movement disorder” or other medical terminology leads me to google where I’ll pass a not-so-merry hour or three! After a spell of being resigned to not knowing, my obsession with the postman has resurfaced thanks to a week-long assessment at Great Ormond Street Hospital.

We left with little new information and no explanation for her problems, but still I’m desperate for a letter revealing the outcome of a long-forgotten test or perhaps the doctors might write something in a letter they couldn’t say face-to-face. For example, “PS she has “***” syndrome.” So we wait and wait. Patiently. We have no choice, but feel that harsh sting of disappointment every day as the postman retreats down the garden path. I see the letter on the mat and make an instant assessment. ... White or brown envelope? (Brown tends to be appointment letters while the juicy information comes in white) Addressed to me as Mrs or to “the parents of ...?” (The latter is sure to set my heart racing) Check the postmark… Could this be THE ONE? .... ... Then the familiar heart sinking feeling as I find a circular or a copy of a carer’s newsletter.

Oh well, there’s always tomorrow.

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