How on earth did we get here??

It was the 7th of August 2012 when Delilah had her first MRI. She was exactly 144 days old when she had her first lot of medication to aid her gently off to sleep so she could be placed in the MRI machine. Exactly a week later I had visited the local GP as I had missed my period and was terrified that I was pregnant again. This was not the time to be pregnant… Delilah was born with scaly dry skin, other than that nothing seemed out of sorts. We were told that her skin would clear up in time with moisturiser and baths. It didn’t. So I took her to our GP at just under 5 months old to express that not only had her skin not cleared up but she was showing no signs of attempting to sit up. My niece had been born exactly 10 days before Delilah and we all know that we should never compare children, but we all know that everyone compares everything. It’s not malicious or done for any other reason than we are human. Our brain wanders and it can’t be helped. So I knew Delilah was behind. We spoke to the Dr who had told us we would be named on the waiting list for a dermatologist as she did indeed need further consultation but otherwise we were fine to leave, everything seemed ok. That was a Thursday. On the following Saturday we had received a had delivered letter asking us to contact the Niall Quinn centre in order to book our daughters MRI. Surely this can’t be right we thought and panic set in.

So back to the pregnancy scare. I wasn’t, phew! But the Dr instead asked me if there was anything I had been stressed about recently? Is there any reason my body maybe under strain? I went on to explain just over a week beforehand our daughter had undergone an MRI and we had not a clue why or what the results are. Luckily being Delilahs mum she could check whether any letters had been sent to the practice, she then continued to mumble out loud while reading the words “mass on the brain mmmmm further tests mmmm refer to….” And that was it. She told me to leave asap and to call the paediatrician and to speak to someone. I walked out of the room, passed my husband, down the corridor, out to the back of the practice and sobbed my heart out. How could no one of contacted us? Dan went into protection mode, a switch had flipped that id never seen in him before. He called the practice and said if we didn’t get a call back in the next half hour we would go there and sit in the waiting room (peacefully btw we aren’t psychos! Ha) until someone would explain what on earth was going on. We did just that. I can remember sitting in the room, looking at this Paediatrician tell me my child wasn’t going to be ok. That our life was about to change and that he couldn’t help us. Instead he would pass us on to a Dr who knew her stuff, and was perfect for children who have rare conditions. RARE CONDITIONS Like WTAF? How on earth? What on earth? Like, did I blink and miss something? I heard every single word he said but I did not hear a thing. The only thing I heard clearly and still can is the sentence “we do not know what your daughters life expectancy will be, here is a leaflet and your new Dr will be in touch”. Now I know I am not alone in thinking this, but please contact me if you have thoughts on this but who on earth lets someone walk out of there completely unprepared? Like, I have had three children but going home that day was like taking your first born home and not knowing what to do. We were now on high alert. She moved, I checked her. She coughed, I checked her. I felt like that 16 year old all over again. Out of her depth, acting the grown up but really? Lost. Completely and utterly lost. But this is when we started the new journey, apart of a new club where everyone is fighting similar/same battles everyday and we all lean on one another. This is our story, according to me, inside our world, I hope you enjoy it.

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