There’s that moment, the moment your child is born, and you wait to hear them cry and know that they are ok, and the doctor tells you they are good, and you get to hold them in your arms and thank everything you believe in for your baby being healthy. You look at them in awe and your heart is filled with love and gratitude.
Then there’s those moments after when you’re in the hospital ward and they do all the checks and they tell you everything is normal and again you feel relief and so grateful to know your baby, the baby you grew and brought into this world is healthy.
Then there was another moment for me, a moment, a conversation that broke my heart, that made me question what I had done wrong. Why I had failed my baby, my beautiful innocent girl who had no idea her mums’ heart was breaking for her.
When you least expect it, in my case a phone call whilst trying to get the kids out the door for kickboxing. A brain injury, you think my baby has a brain injury, an injury in my womb or during birth, surely this cant be the case, my mind can’t quite take it in. The doctors would have picked up on this, the health visitors, the baby check-ups, surely someone would have noticed if my baby had something as serious as this.
‘She needs an MRI to check her brain’ the doctor says. Again, this must be a mistake. Ok, she has had some trouble putting one of her feet straight but there could be many reasons for this, yes, her left arm isn’t as strong as the other, but she does still use it.
Again, my mind goes to that place…..what could I have done wrong? I done everything I could to keep her safe, everything I could to make sure she was going to grow into a healthy baby and yet it doesn’t matter what I tried to do as there’s a chance is a chance my baby may have a mild brain injury. I can’t quite believe what I’m hearing. My heart is scared. My brain is scattered.
Its 4 months of waiting, 4 months of torture not knowing an answer. I don’t cry, I can’t cry, not yet because I know nothing, it’s just the doctor’s opinion, not fact……….
The brain scan is done, and the wait continues, and now here we are waiting outside the doctor’s office to be seen.
You know when you worry of something bad happening and you feel anxious and get lost in that worry but then you snap yourself out of it and realise it’s just a worry, it’s not real, that’s what it felt like. Like I must be imagining this, this cannot actually be happening. I am going to wake, and it will all be a bad dream,
But it wasn’t.
Don’t cry Sarah, don’t cry I tell myself. Rubi is here, don’t let her see you upset.
‘can you ask her to grab up over her head?’ the doctor asks.
Stay calm Sarah you got this.
The doctor’s demeanour puts me on edge and a sinking feeling overwhelms that this isn’t going to go the way we had hoped it would.
‘see her toes move differently on her left foot’ the doctor continues.
Concentrate on what the doctors saying Sarah, do NOT CRY
‘this is another sign’.
‘we haven’t had the brain scan report yet’
‘chance of epilepsy’
Keep strong Sarah, Rubi is watching
Don’t look at Daniel, you both might crack.
Think of questions, ask her questions, ask the doctor all the important stuff.
Hearts thumping out my chest.
Don’t let your emotions take you Sarah, this isn’t about you.
‘we will probably never know the cause’.
‘it is mild, it will be a hindrance’ – this is word she uses a lot.
‘lack of concentration, memory may be affected, splints, operations for worst cases’.
My brain is gone now, all this information to take in in so little time and I can’t breathe, words coming out of the doctor’s mouth and I feel in a daze, a trance, I’m there but I’m not.
I’ve failed you Rubi, your mummy has failed you. What if I gave up work sooner, what if I went straight for a c section, what if, what if, what if……… What did I do to fail you my precious little beautiful perfect girl?
‘I’ve been doing this a long time and from everything I’ve seen Rubi had mild cerebral palsy’ the doctor confirms her suspicions from our first conversation are correct.
‘What can we do to fix it, make it better, improve her condition’ we both ask? That’s what we care about as parents, what can we do to make this better for Rubi. For our little Rubi Autumn. The worst part is that there is Nothing, nothing we can do to fix her leg or foot to make her walk and run like other children. Ours hearts break some more.
It has been just over a month since that moment and I still haven’t cried on anyone’s shoulder, I haven’t had anyone hold me as I let go of all the hurt I have held inside since that first phone call, all the hurt, sadness, anger and fear that drowns my heart and soul.
I don’t know how to let go. I want to let go but I can’t seem to. I feel like I’m on auto pilot and I don’t know how to switch back off.
I feel like a failure for my girl, I feel I have made this her life, and everyone is lovely telling me I’m such a good mum and I did nothing, that sometimes things just happen, and she will be fine but all I
come back to is I was growing her. I WAS SUPPOSED TO PROCTECT HER! And I didn’t. So, for that I failed her.
I look at her beautiful face always sooo happy and I get this guilt in the pit of my stomach of what was it that I did wrong or what decision I made that could have prevented this. I am never going to find out when, why or how it happened, and I can’t work out if this a good thing or not.
I look back at photos and think I should have picked up on this sooner but how would I have any idea what to look out for. Why didn’t any medical staff notice anything, why, why, why, a lot of whys….
I sat in front of my computer today willing myself to research her condition, but I couldn’t. I couldn’t bring myself to do this yet. I’m scared of what I will see.
My baby girl loves to dance, loves to run and everything I take for granted she will struggle with. You never want your babies to struggle and knowing that everything other kids will find so easy they will find hard. When she comes to me and asks me mummy why is it so hard for me? I don’t know what I will say. Will she get picked on, left out, life is already hard when you’re a kid and will her heart break if people make her feel different.
I feel numb still, I feel sad, scared, heartbroken, angry, worried and a thousand other emotions. Maybe that’s why I can’t let go. Too much going on.
I have to be strong, her can I expect her to be strong if I cannot?
But I watch in awe, her resilience, her happiness and joy and enthusiasm and my heart is filled with love and pride and I appreciate her accomplishments and try to be the best mum I can be. And to top of my pride and make my heart burst with love I watch her big brother show her so much support, love, compassion, and I feel amazed by him, especially since explaining to him about Rubi’s condition. He has been so beautiful to her that I just watch them together and I feel so lucky. I feel blessed to have them in my life and I feel grateful to have such amazing little people in my life.
I suppose I am writing this in the hope that this will bring me one step closer to accepting everything the last 6 months have given us and moving forward to a different future that I ever envisioned for my baby. And even though it will be different future I will still try to make it as beautiful as I can for her, full of happiness and joy and fun and achievements and lots of love, just like I would have done without this diagnosis.
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