March 1st will always be one of our many new dates to remember. It was the day our beautiful son Bobby was diagnosed at his 21 week scan with a birth defect with a survival rate of 50%.
People throughout the 14 weeks from diagnosis to his death often asked me how was I managing to keep going with determination during a difficult pregnancy. The truth is I believe we all do our very best when faced with very difficult situations. I do have an inner strength and determination much of which I learnt from my parents and I do believe I learnt some great new life skills during my life coaching diploma. I am by no means perfect, nor do I think I got it all right but this is what helped me through the worst times of our life.
Focus on Love and Hope: The intense love we had for our son and the diminishing hope we had that he would live, kept us going to the day he arrived. It definitely helped us to survive and keep things somewhat normal for our daughter who, until towards the end, did not know her brother was facing a tough time once he landed in this world. We became almost experts in CDH through research and speaking to other parents; something that I learnt from my own mother who worked as a NICU nurse in our children’s hospital. We never stopped asking questions and there is nothing we wouldn’t have done for Bobby.
Prioritise sleep: Sleep is an essential coping mechanism for me; I pretty much set the clock to go to bed. If I did not sleep well, I could not cope with the emotions I faced on a daily basis; the fear of what was to come and the not knowing if our baby would live or die.
Embrace the support around you: Love and support get you through the most difficult times of your life. If you are supporting someone through loss and any difficult time; surround them with love, its quite simply gold dust. I used my voice with my wonderful family and friends and found myself asking for help and accepted help that was offered. Sometimes people get things wrong with the very best of intentions but I was honest and relationships remained intact or even strengthened. I am so grateful to my family and friends for all they did for us. Bobby’s journey has also resulted in some new lifelong friends and what a legacy that is.
Consider the amazing help from support groups: Support groups are not for everyone, however I joined some private CDH Facebook groups where I could interact with parents of surviving CDH babies and also those who did not make it. I learnt what questions to ask and also educated myself on what was ahead no matter what the outcome was. You will be amazed at the wonderful people you meet who are facing the same battle you are on a daily basis and you may just learn something new.
Trust the power of Intuition: I learnt a lot about the power of intuition during my course and it was always something I tapped into in life but I turned it up full force and it did not fail me right up to the point when Bobby came early. My gut told me I was in labour and thankfully I followed my intuition or Bobby’s delivery could have been even more complex. My intuition told me to change consultants at one point; we were not a match and I truly believe it was the right decision.
Know your triggers: Patterns developed around weekly scans at the hospital. Fetal medicine specialists are not going to give you good news unless they are absolutely sure. We learnt to mind ourselves around these Tuesday scans. Wednesdays and Thursdays we hid away a bit to recover from the blows and then planned nice outings with Lily and friends to keep us going to the next blow.
Maintain healthy boundaries: I will openly admit that I was selective about whom I spent time with but I also was assertive if my boundaries were not recognised e.g. I could not handle questions so I was honest with people. I had a private group setup to update my friends as I could not face updating people individually
Strong people stand up for themselves, the strongest people stand up for others:
I now know the importance of having an advocate when you are facing a really difficult time. I am so grateful we had such a wonderful obstetrician in our corner who fought passionately for myself and for Bobby . I cannot emphasise how important this was to us and how greatly it helped us. I know now if we ever face adverse times again, we will seek out an advocate if we don’t already have one in our corner.
What kept me putting one foot forward was a powerful quote I read over Christmas 2015 whilst pregnant with Bobby. The book was “Daring Greatly” by Brene Brown and the quote was ‘Be the adult you want your children to be’. Brene talks about parenting not being about the discipline methods you use. Her parenting manifesto was simple; you have got to strive to be the adult you want your children to be. I lived by this throughout Bobby’s journey and I am trying my utmost to do it as I grief his terrible loss. I was as strong as I could possibly be when needed; when we were in theatre for his birth surrounded by 20 odd people I knew I could not fall to pieces. I had to be strong for him and breathe through the horrific fear and anxiety. When we were told nothing more could be done and I thought my heart would stop beating with utter devastation, I knew I had to be strong as Bobby died in my arms with my husband’s arms around him. I remember my own mother telling me to be strong for Bobby and to fall apart later and this is what I did. As we go through the grieving process, this quote is very much at the forefront of my mind. We are trying to be the adult we want Lily to be and what we would have wanted for Bobby. We are trying to face his terrible loss with strength,yet showing that it is ok to be vulnerable and grieve. There are days we will get it right and days we will not; but we will learn from the tougher days and keep ploughing on to ensure Bobby’s legacy is a powerful and positive one and that we are better because of him. Our son was beautiful, handsome, and courageous; he felt our presence and squeezed our hands. Our moments with him were short and our hearts are broken. Because of Bobby and the journey we had together, future Irish CDH babies may have their survival chances increased. There is now a network built with the CDH experts in Belgium and other future CDH babies who qualify for in utero surgery will not need to battle through the HSE process for funding; the master of each hospital can give approval to proceed. Life is not about waiting for the storm to pass. It’s about learning to dance in the rain. We love you Bobby Aidan Fortune x