Mourning into dancing

The Perry family from the US, have not been far from my thoughts and prayers since I stumbled across their Facebook update this morning.

And, it’s GO TIME! Jo is fully dilated and we are going to start pushing in about an hour. Going to read to Colin one last time in the womb… “The Giving Tree”.

We are READY to meet him. Excited does not even come close to what we feel. Thank you all for making us feel so loved and thank you for filling us up with prayer!

All our love,

The Perry’s

What an exciting and beautiful update – one would have to have a heart of stone to fail to feel just a glimmer of happiness at such a joyful announcement. A friend had clicked the like button and so ever curious and always overjoyed to hear about the births of new babies, I decided to have a mosey at their Facebook page and blog, whilst experiencing some vicarious mounting excitement and nervousness on behalf of the family.

Their story does not have the conventional happy ending. Their baby son Colin Patrick Perry, was diagnosed with anencephaly at 11 weeks gestation, part of his brain and skull was missing, the likely prognosis was that he would not survive beyond a few minutes.

Anencephaly is a rare neural tube defect that occurs in 1 out of every 1000 pregnancies. The neural tube at the head fails to close as usually happens between days 23 and 26 gestation, resulting in the major portion of the brain, head and scalp being missing. Babies are born without a forebrain which is responsible for co-ordination and thinking. The outcome is extremely poor – less than 5% of children live beyond 5 days, 7% die in utero, 17% during birth, 26% between 1 and 60 minutes and 27% between 1 and 5 days.

It’s one of those tragic conditions which the Abortion Act had in mind, 90% of anencephalic babies are aborted before birth and it is often quoted by proponents of abortion. I have to confess that the condition is the one that has provided the greatest challenge for me in terms of thinking about the ethics of abortion and balancing the wellbeing of the child against that of a mother. No-one should blame or vilify a mother who decided to go through a termination in those circumstances.

As I read how Jo and Brian had gone shopping to choose an outfit for their son to be buried in, how they had made arrangements for their priest to be present for the birth so Colin could be baptised, how they had prayed that he might not die instantaneously at birth in order that they might have the opportunity to let him feel how loved he was, I could not begin to imagine how it would feel to be in that situation, and I could only weep tears of sadness for them, but also gratitude as I held my beautiful 9 week old baby close. Thank God it was not me who was tested in this way. Would I be able to face the same trial with such good grace, courage and determination? Would I be able to endure 40 tough weeks of pregnancy and the trauma of giving birth, knowing that my baby would die shortly afterwards?

And then I realised that I was actually being terribly self-indulgent. There I was crying tears of sadness over something that was not only not happening to me, but was also very powerful and positive. Instead of bemoaning their situation, this beautiful and devoted young couple were taking every moment that they could to cherish the relationship and time that they had with their son, whilst they still could. Here is what Jo said last week:

So today I woke up and thought, today is my last Wednesday with Colin. It made me so sad to think that it would be the LAST Wednesday Colin would be growing inside me. By this time next week I will have an empty belly. I pray so hard every single day that Colin lives through the birth. I pray that we get time with him alive. What I ultimately pray for is that he is able to live a long life. If everything happens as statistics show none of these things will happen. So, today I tried very hard to be thankful for this last Wednesday with Colin. I am feeling very pregnant now a days, but consciously try not to complain. Today I am grateful to be pregnant, today I am thankful to have Colin alive inside of me. I want to fully appreciate these last few days I have with him. Now, don’t get me wrong, I believe in miracles. I believe Colin is capable of living a longer life than we expect. I believe God answers prayers and heals. I also don’t want to be naive and disregard all the information we have been given. I am as prepared as I can be to meet my son. I am also prepared (if anyone can really be prepared) to say goodbye. The love I have for Colin is beyond explanation. I’m sure any parent understands that. I will be forever thankful for him and how he changed me. Today I have my son! Today he is alive! Today Brian and I went shopping for an outfit to bury our son in. Today was HARD, but at least we had today with him and we tried to make the best out of today. I told Colin over and over again how much I love him. I told him how proud I am of him and how he is changing people. I told him how much I appreciate him and his love. No one knows if this was their last Wednesday with someone they love. Did you live today like it could be your last Wednesday? Did you appreciate the fact that you woke up and took a breath this Wednesday? Do the people you love know you love them today?

Now one can argue that Jo’s decision to carry Colin to term was her choice, one that should not be forced or imposed on others. Maybe so, but look at the joy and the positivity amongst the heartbreaking sadness. Abortion could not have been the right decision, even in this scenario, because Colin’s parents have taken the opportunity to really bond with their unborn son, to get to know him as best as they could, and to love him inside the uterus, no matter how brief his time outside would be. Ultimately they have the comfort of knowing that when he died, it was not a violent brutal death through their bidding at the cold hard steel of an abortionist’s instruments, but enveloped in his parents’ love, surrounded by love and prayer. Allowing Colin to be born and to die naturally, will have eased not only his suffering but theirs too, making the process of grief and healing so much gentler than the dissonance of knowing that one brought about one’s child’s death, even with the best of intentions.

The problem with moral theology in these testing situations, is that whilst it might provide us with the solution as to what should happen, it can seem lacking in compassion. If I had been in this situation and had someone parroting Aquinas at me, I think the Summa would have ended up where the sun don’t shine. Empathy must not lead us down morally dangerous paths, no matter how well intentioned, but it can go a long way to helping people to come to the right conclusions. If I were dealing with a woman in Jo’s situation, I would not be going all Magisterial on her, but helping her to see that carrying the baby to term, would be the best solution for her in the long-run, only dealing with the spiritual blessings and graces as appropriate.

Here are some more extracts from their diary. My usual loquaciousness fails me. I can’t comment beyond tears.

No ultrasound machine can show us how much love we share and we have to be very thankful the amount of time we have had together. We don’t know how much more time we have, but non of it should be wasted on what your head might look like. I know you are exactly how you’re supposed to be. I know you are beyond beautiful because you are a miracle. Your life has already touched so many. You’re only 35 weeks old and have touched more lives than Mommy and I’m 30! I love you so much Colin. Thank you for showing me what is important.

We would have never in a million years thought we would have to meet with a panel of people to talk about what organs we want to donate from our son. Our precious baby Colin. But, this is the hand we have been dealt. We don’t know exactly what God has in store for you but if he does decide to take you faster than we want we have to find a way to turn this crappy situation into something positive, something beyond ourselves. What better way to honor you? Daddy and Mommy are giving you a chance at life and now you will give others a chance at life! What an awesome dude you are! I am so proud to call you my son! I am so lucky to have been given the opportunity to carry you!

Here’s their latest update from Facebook:

October 24th, 2012 at 1:13am, Colin Patrick Perry was born and went to be with God. We are so proud of our son and love him beyond comprehension.

Thank you Joanna and Brian for your brave witness and your courage. This encapsulates the essence of parenthood for me – loving your child so much that you willingly and gratefully put yourself on the line for them, without counting the personal cost. This is what saying “yes” is all about. Mary was told that a sword would pierce her soul, she had to endure the pain of witnessing her son dying an excruciating death, but never lost her faith and trust in God.

One can see that already Joanna and Brian have allowed their suffering to transform them, to bring them closer to God and that untold blessings will emerge out of this tragedy, physically manifested in the new hope and life given to others through Colin’s organs.

Please don’t comment here, go to the Perry’s Facebook page or blog, thank them and tell them how awesome they are. (Unless you are one of the trolls, in which case fill your boots below in the usual fashion).

Colin Patrick Perry Resquiat in pace.