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Travel Advice for the Journey You Had Not Packed For

Orla Freeman by Orla Freeman Additional Needs

Orla Freeman

Orla Freeman

I'm mummy to three little boys. I am married to Shane and together we have carried each other along a journey we had not packed for. The unexpected...

I had packed my hospital bag for the third time. I needed no advice. I was returning to a familiar place with all the knowledge I thought I needed. I had this, there was nothing that I had not packed and was not prepared for.

I never felt the rocky path of parenthood until I had my third baby, Eoghan. Everything before this was textbook, nothing unusual to report. But Eoghan rewrote my mummy manual. Unknown to us, the moment he entered the world our lives took on a whole new meaning.

Before I departed the security gate of the maternity ward there was a box ticked that something was not right. Eoghan failed the Universal Newborn Hearing Test. My attitude was, so what, we will come back next week it will be fine. Maybe I would not have been so confident if it had been my first baby. However, I was now a cocky mother of three.

There was nothing left for me to fear about motherhood. My baby was perfect.

There had been no indications that anything was not as it should be.  I was blessed with a third healthy and happy pregnancy. Once I got past the midwives screening I was ready to bring our new addition home. I carried my Maxi Cosi to the lift, down to the ground floor into the car home without a worry in the world. I never felt a need to worry.  However, our car was on autopilot heading for an unknown destination. We had nothing packed in preparation for the journey ahead.

Eoghan challenged my strength from the start with a tough labour. For the first time ever in my birthing experience I experienced a fear that something was not right. That something was going to happen him.   I felt immense relief once he was delivered safely.  Eoghan left my body but a residue of strength and a powerful love remained inside me.  I know this because I never felt so strong or determined until I had met Eoghan.

He unearths a person I never knew existed and whom I never thought I could ever be.

I have talked many times with other Mums, exchanging our stories and emotions of having a Deaf baby. We always go back to the start. It is often the most emotional part of the story. The days, weeks, months and maybe years of getting your head and heart around a diagnosis. The sadness is often rooted in the unknown because in many cases our babies are probably the first Deaf person we knew.  But as you look back on those early days you now wish someone had told you everything REALLY WILL BE OK. It is in our power to make it as OK as it can be.

I remember when we got Eoghan's diagnosis I wanted to look back and know that I was always OK with the fact he is Deaf.  This was not something that just happened. However with the strength Eoghan left inside me I mindful   rewrote my mummy manual.  It was the only solution I could find to overcome our vulnerability.

I have always wanted to share my early perspective following diagnosis with other Mummies and Daddies who are currently experiencing the same vulnerability following diagnosis. So here is my travel advice for any parents starting their journey to a foreign parenthood land:

For the first year the world would not question him but would see him as just a baby. So enjoy babyhood and do not worry about their adulthood.

This is not always easy as time is taken up with hours of hospital and therapy appointments.  In the first 11 months we had 141 appointments. Appointments are just a way of life now. Therefore, when we were not travelling to appointments, waiting in waiting rooms or talking to the tenth different medical I grabbed what was left of my free babyhood time.  I treasured, kissed and hugged Eoghan with as much positivity and happiness as I could.

Why was I so adamant? Because the first year of life most babies do not walk or talk. For us infancy was the only time when Eoghan was just like any other child of his age. There was no expectation for him to have reached milestones as there would be in the years which followed.

I knew that as he got older people would see the difference between Eoghan and other children of his age. But for the first-year society saw Eoghan as I did "perfectly normal."  Therefore, I knew I had to enjoy every minute of babyhood before society would view my normal baby as something different.

Find as many positives and rationalisations for your journey. Instead of asking why ask why not?

There was nothing I could do to change the path of our new journey. I quickly realised that as time went on I would never want to change it. To change direction would mean not having Eoghan. Therefore, to feel comfortable in this new place we found ourselves I never questioned why. That was too negative.

I asked why not? Why not us? I rationalised every aspect of our lives to justify why we were the right family for this journey. By the end of my exhaustive list I could not find the answers in why us but found comfort and purpose on the why not side of my page.

Embrace the diagnosis do not fight it but go out and find it

Fear comes from ignorance. Say the words out loud. When people feel uncomfortable talking about your child's diagnosis say the words for them. "Yes, he has a profound deafness he hears absolutely nothing." Each time you say whatever words truthfully describes your child is therapy for you. It's part of your acceptance of your child's diagnosis.

Become informed where your true fears lie do not be afraid to become more informed. Sometimes the truth is easier to handle than ignorance of the facts. Knowledge is power.

Meet and engage with your new community they are your torch bearers

Find a community of people who live in your new world. You will soon discover that life is   cut outs of all shapes and sizes but everyone everywhere has a fit. Remove your stereotypes and be enlightened by real life and real people. The most amazing people are waiting to meet you. You will meet human kindness like you have never experienced before.

You will quickly feel that you are the privileged ones who has been touched by the best of what humankind has to offer.  There are so many people waiting to help and it is important to be accepting of that help. Do not be afraid to cross the bridge to the other side. It is not the dark side but a place where you will find the light again.

Stay in the moment do not let your fears ruin the happiness and joy that is in front of you

Be present do not wander off. Control your mind to keep focused. See what is right in front of you. Do not envisage a fearful future. You have no control on the past or future but you can make a difference in the now. Every person is different.

You can read 100s of cases similar to yours but they will never be the same. Do not worry about the what ifs but focus on the what is. Enjoy the moment and remain in the here and now, looking at all that is right and not the wrong.

Be the pied piper and write your child’s history

I never wanted people to look at Eoghan negatively or too sympathetically because he was Deaf. There was already so much more to him than that. I wanted his life to be a positive one. Where people smiled about him rather than cry because they thought being Deaf was a sad or bad thing. I needed to be his voice. I needed to stand up for the life and the identity he was born to. I was the pipe piper.

I set the tune that everyone else would sing to when it came to Eoghan. He was a beautiful healthy baby. My public relations career had been good training in delivering the messages you wanted people to hear. I created a brand identity for Eoghan.

I wanted everyone to recognise and to spread the message that yes Eoghan is Deaf, yes it will be a long road but it will be OK. As much as I want Eoghan's future to be a positive one; I also wanted the same for his history. I wanted his story to be a positive one from the very first page.

Let it out. Speak about it all the time until speaking about it is an easy conversation.

Let yourself be broken do not try to keep yourself in one piece. You need to break so you learn how to repair yourself. Unearth the saddest part of the story, speak of the pain which troubles your soul. Cry and dive into deep conversations. Do not wait for a time that is right to talk. Make sense of it all with a real conversation as soon as it comes into your head.  Cry until everybody is seasoned with your tears.

Speak truthfully and honestly. I always imagined a big black hole. I always allowed myself to go so far with my emotions. I imagined a spring on my back in case I went too far beyond my capability of self-repair. The spring could pull me back on my thoughts if I was going to fall and I could keep them for another day. Instead of packing these feelings away I kept them close so that I would soon return to them with an open heart.

Look after each other and know it's OK to react differently

As much as Shane and I had to learn about Eoghan diagnosis we had to learn about each other all over again. We were now different people because this was life changing. We had to look after each other as we travelled to our new destination. We had to help each other settle into this new place. We spoke until the words were gulps of tears and our hearts beated to the same emotional rhythm.

We now get a clear view of the story each other’s eyes are mentally writing because we listened so closely to each other. We were each other’s superglue, ready to gently piece each other back again when one of us suddenly shattered to the floor. We ironically talked about our fears of Eoghan never talking. BUT WE TALKED truthfully together and exposed our vulnerability never hiding it from each other.

That IS why we always knew which path each other was on because we planned routes we could both take.  We understood and respected that one of us could drive better on some routes and they would be the designated driver for particular situations.

We knew each other's strengths and weaknesses and allowed each other to make sense of it all in our own way. But we always knew what way each other were handling things and together we found a way that worked for all of us.

There was never a wrong thing to say to each other. We were still exploring this new place and for now there were many questions. Eventually we would find the right answers together.

Your miracle is even more miraculous

I stared for hours at Eoghan. Examining him with my eyes and my hands. But my head and heart is where the intensive examination took place. I would look at him meticulously, looking for anything that I felt I should report to the doctors. But I could never find anything. Lying in that moses basket was perfection.

All my other boys were born with dark hair, but Eoghan was different, he was fair. My fair-haired angel was perfect in every way.

I remember I would look at him and thank him for surviving and making his way to us. He was miraculous because he had to fight that little harder to get here. This tiny baby had already made me so proud and I knew it was only the start. He had taught me so much in such a short space of time. I will be forever grateful to my beautiful little miracle for enlightening me to a new meaning of life.

Write it down.

The biggest thing that brought me through the first year was writing it all down. I wanted Eoghan to understand how I truly felt   post diagnosis.   I imagined him asking me how did I feel when he was born Deaf. I have imagined the conversation many times. I have imagined me signing it to him. I will never lose hope that I will speak it to him someday. But more than anything I wanted him to read it for himself.

I recently met a Deaf man who asked me how I felt when I found out Eoghan was Deaf. In that moment I was so relieved that I had written it all down. That raw, real-time account would never have reached Eoghan through reminiscing on those early manic days. I needed him to truly believe that deep down in my core I was always ok with how he was born. But above all writing kept me going.

It kept me emotionally charged that I could put my thoughts somewhere. I let my inner thoughts out without having to explain or justify the way I felt. I knew that when I wrote, my truthful mind was at work. Looking back the words are like stars in a night sky sparkling with love, fear, vulnerability but above all hope.

The hope that the future was a happy place for Eoghan. I look back now on those pages and less than two years on, I can already see how far we have come. No matter what your journey is, no matter how hard the road, you will find the way to progress and persevere on.

Every journey is different. No two journeys are the same. They may be similar but never the same. None of us come home with the same holiday snaps even if we have been to the same place. Therefore, there is no right or wrong way to accept what life drops in front of you.

But I hope that you may find some inspiration at the start of your journey from the truthful words of mine.


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