Would I Change Anything?- Guest post by Ailsa

A letter to my baby girl…

Sometimes I let my mind wander. It often happens in the quiet darkness of the early hours when everything else is still.  That’s when my grief is often the loudest and hardest to make sense of.  I often torture myself by asking the same question over and over. Would I change anything?

I wouldn’t change my experience as your Mum, however hard it was, is and always will be.  Being your Mum was the hardest and most heart breaking thing but I would do it a thousand times over.  For the most part, I am proud and I am thankful for the way you have, and continue to impact on my life.

You are our second child.  We already had your beautiful and healthy brother.  He had just turned two when I was due to give birth to you.  After a fairly normal pregnancy, I was induced and gave birth thirteen days after your due date.  You made us wait an extra thirteen days to meet you!

I held you to my chest while I got stitched back together and we commented on how like your brother you were.  I asked for the sides of the bed to be put up as I was scared I would drop you, but when the nurses asked if I wanted to give you to your Dad while I had a rest, I couldn’t bear to let you go.

We spent the next few hours in blissful ignorance.  I often think about those first moments of your life and wish that I could go back and soak up every second.  I can’t really remember what happened next.  You were taken away so the consultant could look at you.  We were told that you were not as responsive as they would like and that you were being taken to neonatal for some monitoring.

Then you were gone.  We were left alone while you were settled into neonatal.  I don’t know how long it was before we got to see you. I couldn’t make any sense of what happened.  We were exhausted and emotional and had absolutely no idea what we were about to go through.

We were told that your tone was poor and that you were having seizures.  At this point the doctors were confident that they would stop and the damage, if any to your brain would be minimal.  I was absolutely distraught at this. I sobbed at the idea of you being in the neonatal unit.  This was not how I had imagined your first few days with us.  I wanted to hold you, and feed you and care for you.  Instead, we were in a room with other terrified parents and their babies with machines bleeping and alarming constantly.  One of the things that upset me the most in those first few days was that other women were caring for you.  Nurses were in charge of your safety and that was supposed to be my job.  I felt completely useless as all we could do was hold your tiny hand while you had seizure after seizure and listen to your monitors bleep over and over again.

Fast forward five weeks and you had been transferred to neurology at the sick kids.  Your seizures had increased – in frequency and in severity and your tone had not improved.  You were being tube fed and had not made any developmental progress.

Then we were sat in the consultant’s room.  I remember seeing the consultant’s lips moving but all I could hear was the thudding of my heart and muffled buzzing.  The room was spinning the words being spoken were not making any sense.  Your Dad asked a question I had been completely avoiding about your life expectancy.  We knew, as the weeks went on that your brain development was not normal.  We understood that the road ahead was going to be very difficult.  We had discussed how we would cope as a family and I had been mentally preparing for all the ways we could support you.

The consultant told us that we would probably have a few weeks or months with you.  You had a rare brain condition.  The wiring of your brain was all wrong and your brain was unable to send the correct messages to your body.  It was causing countless seizures and because of this you were not able to make the milestones of a healthy baby.  Your body was strong and healthy but your brain was not able to control it and because of this, your breathing was affected.  They explained that you may experience a seizure that would be severe enough to end your life, or more likely, your respiratory system would weaken when exposed to viruses and eventually stop working.

We left the hospital and got into the car.  It was a few moments before I realised I was screaming.  I was screaming at the top of my lungs.  I felt like I was watching this happen to someone else.  I was watching and listening to her screams but I couldn’t do anything to stop them.   I had been desperate to get you home.  From the moment you were born I had wanted to care for both my babies at home.  The hospital encouraged this fully and agreed that we should spend as much quality time at home as we could.

The morning after the meeting with the consultant, I asked when we could go home.  He said we could go home that day and I sobbed with relief.  He said it would be better to go home on day release and bring you back to the hospital at night to begin with.  I didn’t like this idea and just wanted to get away from hospital and try to get on with life.  However, the reality of bringing you home was excruciatingly difficult.  You were having seizures as soon as we touched or moved you.  Every time your brother knocked down one of his duplo towers or dropped a toy, you would have a seizure.  It was heartbreaking.  It was hard and it was too much to cope with.  We took you back to the hospital and said we couldn’t cope.  How could we watch our newborn baby have over one hundred seizures a day?

They reviewed your medication and slowly got your seizures under control.  We were told you would never be seizure free and to be honest, we got used to them and were able to deal with them fairly confidently.  They were part of who you were, and part of our every day lives.

We had learned how to tube feed you and administer your medication in hospital, and were 100% in charge of your care.  Your needs were complex, but you were such an easy baby to care for.  I used to joke (yes, I was able to joke) with friends that apart from the emotional turmoil we were going through you were the easiest baby to look after.

We had endless ups and downs.  You caught colds and viruses and we were told on numerous occasions that you were going to die.  You spent a few times in intensive care and we said our goodbyes to you more than once.  But for the most part, we spent your life at home, as a family of four.  We were able to go on with our normality and enjoy precious moments with you.  I will be forever grateful for those times.

You were nine months old when you died.  You were in my arms with your brother sat on the couch beside us.  It was peaceful and in a strange way, beautifully calm.  You were ready to go.  You had fought so hard and had such a tough time.  We were ready to let you go.  I never thought I would ever say that.  I imagined as a Mum, I could never let my child go but it would have been selfish of me to keep you here.  We could have kept you with us for longer.  If we had taken you into hospital, you could have been kept alive with ventilators and we could have kept you with us for longer.  But that wasn’t the right thing for you.  There wasn’t going to be a miracle recovery and each time you got ill, your quality of life suffered.  Every cold and virus made you weaker.  We may have been able to keep you with us longer but it would have been for us, not you.  We had to let you go.  There is something beautiful in knowing that I was holding you and loving you when you took your last breath.  I feel so privileged to have been the one with you, and I hope that you could feel how much you were loved.

The death of a child terrified me before I had you.  I remember talking about it to my friend before you were born.  We both said it would destroy us.   How could you ever deal with something like that?  The truth is losing you did destroy me, but the love I have for you and your brother built me back up again, just a different version of me.

It is incredible how resilient human beings are, and how much stress and heart break you can face.  People often comment on how brave and strong I am.  They are, as I am, shocked with how I have ‘coped’ with the devastation of losing you.  But I am no braver or stronger than anyone else. I just didn’t have any other choice.   There were times when, if I could have, I would have run away and never come back.   But I am your Mum and because of you and your brother I found a way to keep going.

My grief started from the moment you got taken away from me to go to neonatal.  I was bereft that we were not able to spend the first moments of your life together in the way I had imagined.  I grieved for the relationship that should have been developing between us and the life we should have been living as a family.

Because of your condition we were not able to communicate with each other as other mothers and daughters do.  It is sometimes difficult to say aloud or to explain to people, but I often wondered, and still do, if you knew how loved you were.  I often wonder if you knew me.  Often we couldn’t tell.  You lived in me, so hopefully you knew me as Mummy and felt the love that seeped out of me for you.  I grieve for the relationship that we didn’t get to have.

I grieve for your brother.  The big brother who welcomed and accepted you with all his heart and who continues to be so loving towards you. He talks about you all the time.  We talk about you all the time.  You are part of everything we do, and come with us wherever we go, but I’m desperately sad that I’ve not been able to watch you grow up together.  I grieve everyday.  My grief for you is so strong because the love I have for you is so strong.

It is not all doom and gloom; because of you I have found happiness in a way I don’t think I could have if I hadn’t had you.  I don’ think I would be the Mum I am now if it wasn’t for the experiences I have had as your Mum. If I hadn’t experienced illness, seizures, intensive care and your death, I don’t think I would be as thankful or appreciate how lucky I am to be a Mum to you and your brother.  I have also found a few things that have helped me get through tough times.  Talking –whether it be to a counsellor, a Mum who has been through similar experiences or my best friends and family.  It does help to talk and acknowledge and accept the way you are feeling is valid.

I also took up running.  I was not and had never been a runner but it has helped my mental health more than anything else.  It gave me something to focus on, a way of getting out of the house and a way of working through some of my emotions.  Running is one of the things that you gave me.  I know if I hadn’t been through what I have with you, I would not be running.  I see it as the thing we can share.  You are on every run with me.

My wonderful boy has often been the only reason I have got out of bed some mornings and I am so thankful that I have him.  He has been part of it all.  The care and love we gave you, and the grief we have for your loss.  So, when I let my mind wander, and I think about whether I would change anything,  the answer is no.

If I could wave a magic wand, I would have you here with me – happy, healthy and thriving.  Of course I would, but then it wouldn’t be you.  You wouldn’t be the beautiful girl that I fell head over heels in love with.  I know I would have loved you just as much, but I can’t imagine you being anything other than who you were.   I wish you were still here.  I wish you were here for me to hold and kiss.  I wish you were here with us, and I wish we could share future memories with you. I miss you everyday.

Losing you has been the hardest lesson.  It has made me make the hardest decisions, and broken my heart over, and over, again; but you were absolutely worth every single moment, and I am forever grateful to have had you in my life.

If it were a choice I could make, I would choose you a thousand times over.

All my love,

Mum x

Instagram- @ailsaherbert_86