Technology never fails to amaze me. Not just the medical technology that exists that saved my daughter from dying, or the technology that exists to help her feed directly through her stomach as she can’t feed orally… but the internet. What an absolutely fantastic resource this has been for me and my family in the last 12 months. The internet; and also the coffee machine (Yes my busy days are often fueled by regular visits to the coffee machine)
I remember when I was pregnant I joined one of those pregnancy forums. I remember being surprised by how much people worried about every little flinch or every remote lack of movement. What I remember most was being able to log on and ask questions that your doctor or midwife may not be available to answer at the time you want to know. I spoke to a lady on there who was a few months behind me in her pregnancy – then the birth trauma occurred and I disappeared from the forum all together.
She found me on Facebook and had been following my daughter’s page for a while. It turns out she had an almost exact birth trauma as myself and as a thank you for being so supportive she sent me her second hand I-pad. I was absolutely overwhelmed by the kindness shown to me by this wonderful family in
There have been numerous occasions where a rash has appeared I didn’t like the look of, or Amy has tolerated a feed unexpectedly, or the feeding pump has decided to make an unexpected error at me… or even just a silly question that I would feel daft asking a doctor has popped into my head… all situations where I have been able to log onto the relevant forum and get instant answers from not doctors, not nurses… but actual people living this day in and day out. I don’t know how I would have got through this year had it not been for the various forums on Facebook. Nor would I know about the extensive range of equipment and therapies out there.
There have been times when I approached professionals about a medication we wanted to trial but had only been listened to once providing a case study to prove my reasons for wanting the trial. When we started Amy on the blended diet through her gastrostomy it was initially met with a hint of disapproval from our team of specialists. It was only when I did thorough research and discussed the issue with other parents in the same position that I decided to collate all of the information and put it to paper. Once this was all printed out they were delighted with what we were doing and very impressed with what we set out to achieve.
Being a special needs parent can be incredibly isolating.
For me personally my mood can change almost by the minute – You can feel stress, happiness, anxiety, fatigue, adrenaline, joy, grief and a whole multitude of emotions and when there are times you feel friends and family may not understand you always know you have this extra extended family out there that will totally get what you are going through. They will share tears with you, they will laugh with you, they are always there as part of your journey.
On the same level I find that Facebook is a fantastic platform to show your loved ones and peers what you are going through and to gain support from them. I have been amazed by the generosity and kindness of people I rarely even see much in real life. The amount of gifts, fundraising and just well wishes that we get is truly heart warming.
Ironically I must conclude this piece by returning to the feeding pump to figure out why it is beeping at me…either that or it is going out of the window.
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