‘Every day you’re here I’m healing…’
When you get a diagnosis of your child that has a life affecting impact it feels like your future has been screwed up and thrown away. That’s how I felt in the beginning. I remember I would sit in my hospital bed thinking over and over again of how I would get through this ordeal and that it was just so negative. Freya was in neonatal downstairs and I was in my bed thinking about myself. In the weeks to come there would be many factors of bringing me out the other side thinking the future is not so scary and it is in fact not ruined or thrown away.
I got the family giving their support and their views and for myself I really wanted to feel it from everybody. Being in the hospital alone hugely hormonal and emotional, a million thoughts in my head, I had thought about what would my dad of said to me? My brothers and I lost our dad about 2 and a half years ago now and it was just such a shock and distraught time. I could only describe my feelings then with grieving the loss of him to what I was feeling with Freya. You look for answers from family but there was that one thing missing. Till this day I still wonder what he would have said to me. I often find myself asking him to look out for Freya when I can’t be with her in hospital and I know he is looking over her. I guess it’s a comfort thing to think that there’s someone there to look out for her.
I hadn’t spoken to any other mums really in the neonatal I was more in a bubble of my own self- doubt and worry. It would be 11 weeks later that a lovely mummy had got in contact with the hospital for me to contact her and catch up. It would be that she also had a son who was born the same day as Freya who also has Down’s Syndrome! What are the odds of that?! I thought that was just amazing and that has even helped myself as I now have this lovely mum to talk to about our children and we are exactly in the same boat! We were planning on meeting up for a chat about our experiences but this was brought forward as her baby boy was admitted to hospital with respiratory problems and then Freya deciding to have similar symptoms. So, we actually met in hospital and were able to speak to one another which was lovely to do (despite the circumstances). She had added me to a group that meets once a month with other parents with Down’s Syndrome babies/children. I can already feel the support within that group is strong and will be all friends for life with our babies growing up together.
I would say in the beginning it was hard. There were a few things that has helped me pull through. One would be music. It’s funny because there is always a song that will remind you of something that has happened or someone. In my case, there was this one song by Clean Bandit and Zara Larsson – symphony. The lyrics were so apt for my situation and how I was feeling. There is one verse that just reflects it all.
“I’m sorry if it’s all too much
Every day you’re here, I’m healing
And I was runnin’ out of luck
I never thought I’d find this feeling
‘Cause I’ve been hearing symphonies
Before all I heard was silence
A rhapsody for you and me
(A rhapsody for you and me)
And every melody is timeless”
I just used to think she’s going through all this in hospital with the oxygen, heavy breathing due to the holes in the heart and the infection that she had, it just was so much for a little baby and I thought how unfair it is. But as she was starting to get stronger and with every cuddle and interaction with her I was starting to feel better and more positive. Like the song her life will be like her own sympathy and a beautiful one at that, we just must overcome hurdles as we go like her heart surgery that will be coming up very soon. Every time I would drive up to the hospital it would be on the radio, it just become so apparent it was her song. I would always have tears when listening to it. Now I don’t as I don’t see Freya as such a scary challenge as I thought. Harry now says it’s her song also which is lovely but he also always asks me, when it comes on, ‘does it make you cry still mummy?’ I hate that he has seen me not being a strong mummy for him and Freya but I think it’s good that he knows its ok to show your emotions.
Harry was also a great distraction, yet challenging, to keep him happy and occupied whilst visiting Freya in hospital. It was him that got me through a lot. We were always doing something which kept my mind of run away thoughts at bay. I would take him out to Paultons Park for the odd day out so he would have mummy time to himself which he needed. It was having an affect on him. He was being quite demanding for my attention when I needed to give Freya my time too. Seeing Harry look at Freya like she is just like any other baby helped me. He looks at her with nothing but love and this has helped me heal because seeing him just look at her no differently made me look at her the same, I no longer seen Down’s Syndrome looking at her, I see my baby girl. You learn a lot from children and one is judgement, there isn’t any. They already have this special bond and I know in years to come she will have him to look out for her it just melts my heart watching him with her and the way she looks at him.
The people I have around me/us have been great. With my mum coming down when she had time off to help with Harry to take off pressure off of us.
For Darren he had explained his way of getting through it was to get on and do DIY house things, like the garden. He had replaced the decking just outside the backdoors. It was something for him to focus on. It was therapeutic for him. From day one seeing Darren look at Freya also, he had nothing but love in his eyes, the same looks he gave Harry when he was born. I suppose you hear/read stories in magazines and what not where the partner has done a runner because they can’t cope or accept that child with extra needs. I guess I was scared Darren may do the same (although I know he wouldn’t) but you still get that feeling of ‘what if?’
We have taken each day as it comes and that is all you can do when given this path in life. We don’t dwell so much on her future or ours because that’s when you just worry about everything and start feeling stressed. I must admit it is still a scary thought as to what will happen but to think of it now we try not to go into it or talk so much about it.
TALKING TALKING TALKING!!!
Our family have been brilliant. They’ve listened to our worries when we talk about Freya. They give their words of support and love to us and that’s just what we need. I must give credit to my close friends and family because it’s when I decide to have a couple of glasses of prosecco (rare that I do this and won’t if Freya is at home and Darren would be the sober one to look after Harry, before the perfect parent brigade pipe up) I will talk and cry about Freya and the whole situation and they just sit and listen to me. I think you need a night where you can just stop being ‘mum’ or ‘dad’ just to recoup and let go and not worry. So, I would say to anyone reading, don’t feel guilty for needing some space to just collect your thoughts/feelings and sanity. Don’t be scared to talk about your feelings everyone is different in how they deal with things and this is what I am learning along the way, especially now being in contact with another mummy and daddy with similar feelings I don’t feel alone.