Dear Professionals...

Updated: Jun 3, 2021

Dear Professionals,

The last nine years have been difficult for our family, I am sure you know this as I am positive you have seen it hundreds of times.

Except, you don’t see it all.

You don’t physically see the impact it has on a family, how could you within the twenty minutes of an appointment or a visit? You can’t see that my teenage children after nine years of tears, meltdowns and difficulty resort to often sitting upstairs in their room. We have to coax them out to spend time with us, granted it hasn’t always been this way but this is where they are currently at.

You don’t physically see the strain it has on our relationship, the days we have sat in silence after getting bad news, the heated discussions when we have not seen eye to eye on treatment plans or school choices. It is now left to me, it’s me that makes the finally decisions and who signs all of the paperwork because I don’t work, I can’t work, Delilah is home more than she is at school.

You don’t physically see that when you fit our home with equipment, drop off equipment or tell us to give something a try that this is an adjustment. Especially, in those early days… imagine being told the difficulties your child will face in life then have your home filled with equipment in order to care for them. These are often in black and grey colours too… not fun or appealing to children.

You don’t see the impact it has across our families, on either side. We used to be close knit, now I barely see my family or dans. The belief that they may offend or upset, or think we won’t show up as their children are able to do things Delilah can’t. There is an atmosphere you can’t see but can feel, a pity or a feeling as if we somehow have it lucky and get more attention… trust me, we don’t.

You don’t physically see the changes dan has taken for work, he went from a job he was thriving in and had trained very hard to reach to a job out of his comfort zone - which he now loves but it took it’s toll.

You didn’t see me the day my husband had to be defibrillated, because his heart had taken on the strain of our life to a point where it couldn’t take anymore. He is now on medication for life, and looking at the possibility of heart surgery.

You didn’t physically see me when I had to start counselling to deal with all of the above and more. I was sat in a room where I was asked “what brought you here today?” And I didn’t know where to start. Could it be the strain on my family? My marriage? The feeling of lost when i’m alone? The reality of this is life now.

You didn’t physically see all the tears that have been shed, from all parents, carers, everywhere.

Now, none of this is your fault at all, and this letter is certainly not saying that. This letter is from me to you, asking you to remember all of the above and more before you consider sending us on another road trip to London, to try more equipment, to try medications with side effects, to ask me to hold her down while you sedate her for surgery. We appreciate you, we trust you in the decisions you make, we literally put our children’s lives in your hands and allow you to guide us on the crazy journey we had no choice being on. I just want you to stop for a second every time your next appointment is due in and think, no matter what number patient they are that day, everyone struggles. Most parent carers don’t get sleep they are exhausted, listen to them. Some of them are silently crying out for someone to step in but won’t say so because of the fear that they will be shamed for struggling, hear them.

We know you have a huge job on your hands, we know you see thousands of families…

But each time you see one, you are seeing one, their family and their story. Take a moment and remember although you may have helped us learn this life, it didn’t get easier. We appreciate you, all that you have done and more.


Delilah’s Mam.

Tracey x

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