shadows.

I found this post and the words really stood out to me.

when it hurts

A wife who loses a husband is called a widow. A husband who loses a wife is called a widower. A child who loses his parents is called an orphan. There is no word for a parent who loses a child. That’s how awful the loss is.

-Jay Neugeboren

I wish I could explain.

But if there isn’t a word, then how can I?

There are many difficult experiences in life. We all live with shadows.

But the death of a child… everyone shutters at that one.

Life goes on, but there is a continual shadow on the heart.

~~~

Photo credit: Collin Key / Foter / CC BY-NC-SA

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5 months

Today it is exactly 5 months since my angel gained her wings, in fact to the minute as I’m writing this, 5 months since I’ve heard her voice, 5 months since I’ touched her thin but warm skin or felt her arms around me.  How can it be only 5 months when it feels like years? sometimes I still hear her call me but then realise it cant be.  I still have her drawings and pictures all over the fridge as if nothing has changed and yet everything has changed.

Last night I decided to write to all the cf mommy’s that travelled beside me on this journey explaining how i found it difficult to read their posts about the struggle they are still having with their little ones about how hard it is for me to read how their children are doing.  I would give anything to be still struggling with Órla, to have hope for the future again.

The road I am walking is very lonely with very few passers by, even the closest people do not feel the bumps and turns in the road as I do.  How i wish id never had to walk it but I know that i will not find peace until i have.

One thing I have promised myself and Órla is that I will live the rest of my life to the full and not waste any of it.  After spending the last 15 years in an abusive relationship and fighting for Órla’s rights as an autistic child and then caring for her after her cystic fibrosis diagnosis I felt I lost myself.  I’m still not sure who I am other than the mommy to two beautiful girls but I’m sure a hell gonna try and found out.  Órla and God, i believe, gave me this second chance and I will not let them down.

One day at a time

Time is a great healer they say, give it time things will get easier they say, your at the very early stages they say it will get better.

One thing I know for sure time will not ease the pain of losing my child, how can it, do I suddenly not miss her as much? do I somehow forget that she’s gone? of course not this is something that will stay with me forever and maybe over time I will get used to the ache inside my heart and maybe over time I will learn to avoid situations that will upset me and as the months and years go by I will be become a new me a different me but never ever will time makes things better.

Another diagnosis

Órla had been so unwell this last few weeks and she couldn’t seem to shake off this cold. She was put on antibiotics but they didn’t seem to help her.  She was very lethargic and pale and I decided that I was going to take her to Accident & emergency as all the gps visits ended in another course of antibiotics. After a short time in the waiting room we were told that she would need IVs and was admitted overnight.  This was a complete and utter shock this was the first time I had ever had to stay overnight in hospital with one of my daughters except when they were born.

She was kept in for a week of Iv antibiotics and they did several tests on her bloods as she wasn’t improving as quickly as they would have liked. I was just so relieved they were looking into it and not just handing out more antibiotics, the last thing in the world I expected was for them to tell me órla had a life limiting condition.

She had been out of hospital for two weeks by the time we got her blood test results. I will never forget that call, the paed doctor asked me to sit down and asked if I had somebody with me, still I didn’t worry too much (silly me).

‘Órla has cystic fibrosis’ he said ‘and we need you to attend the cystic fibrosis clinic in belfast tomorrow’

Now I vaguely knew what cystic fibrosis was I’d remembered reading about it being terminal and children die young but it wasn’t until I got off the phone that I googled it and burst into tears.

Having already dealt with her autism diagnosis 3 years earlier I was used to fighting for my daughters rights and wishes so I was prepared for another fight, this time for her life.

Diagnosis – good or bad?

We’ve had plenty of these over the years, Autistic Spectrum Disorder, Aspergers, Cystic Fibrosis, Short-sightedness, Sensory Processing Disorder the list continues.  To be honest when Órla was first diagnosed with Autism we were pushing for a diagnosis because it meant (or so we thought) that Órla would get the help she needed in school. How wrong were we.  Although it meant that on paper Órla was listed as having ASD we very soon learned that our fight was only just beginning.

When Órla first came into this world it was a difficult journey for us both, she had the cord wrapped around her neck and was lifeless for the first few important minutes, she was immediately taken away and given oxygen and whatever else was necessary at the time, it felt like hours before we heard her first cry but was of course only minutes.

She was a hungry baby and took to the breast straight away but was constantly hungry so i topped her up with bottles (we now know this is one of the first signs of CF) she also had a very runny bum (another sign of CF) and although tests were done on the faeces nothing was reported back to me and we were allowed home. We settled into our new life but something just didn’t sit well with me.  I knew Órla was a demanding baby but she didn’t seem to like all the usual things babies like, being picked up, cuddled, going out in her pram, even in her car seat and going for a drive seemed to unsettle her.  As the months went by I noticed that Órla had no eye to eye contact with me but just thought maybe she was shy, she would go into her own world a lot and didn’t want much contact with others.  I had great difficulty toilet training her not because she didn’t know what to do but that she couldn’t face the smell or touching herself.  Unfortunately although she ate a lot she was constipated on a regular basis and on one occasion this caused a prolapsed rectum (her rectum popped out) something which I didn’t think was even possible.  Luckily on this occasion it was possible for the doctors to push it back in place without surgery but we were told that if it happened again she would definitely need to go to theatre.  I cant begin to tell you how much this panicked me especially as Órla was due to start school soon.

Eventually when it came to Órla’s pre-school check the health visitor started to put pieces together and she was put forward for tests.  The word Autism was mentioned.  I didn’t really know too much about it but when i researched it online everything fell into place and i knew that’s what she had so when after nearly a full year we finally got a diagnosis of Autism Spectrum Disorder. I was so happy that we finally knew what was wrong with my little girl and we could now learn how to help her settle into this crazy world we lived in.  Some parents I am told hate their children to be labelled but we were delighted.  We set about firstly educating ourselves about this condition and then began the task of educating our friends and family and to explain that all the tantrums and episodes were in fact not because Órla was spoilt and needed a good smack but in fact were sensory overloads on her poor system and meltdowns which she couldn’t help or explain but that’s a story for another post.