Warning this one is going to be a tearjerker.
I am writing this because I need to process what happened and tell our story, in the hope that it will all make sense one day.
I have often wondered if prenatal stress causes some of the difficulties Charlie faces in living with ASD and SPD. If it is totally random, completely genetic, or a combination of millions of factors. I wonder if stress caused to the parents whilst the babies tiny brain is developing can cause or at least contribute to these things.
I have searched the internet for research papers in this area and found very little conclusive evidence to sway me in either direction.
Maybe the stress we went through in the pregnancy was simply bad timing or maybe it wasn’t so much the cause of the problems but Gods way of preparing my heart to receive a child with additional needs. Who knows, maybe these things remain hidden from our understanding for a reason.
Both of our pregnancies were planned and we were very blessed to have been able to get pregnant within a few months of deciding that the time was right. During my first pregnancy I was child free and so able to look after myself a little more easily, I could sleep when I needed to even if it was the middle of the day. We were both working and our home was small and affordable. Apart from me being generally hormonal, grumpy, very large and extremely uncomfortable things were fairly straight forward. Unfortunately mid way through the pregnancy we found out the my dad had terminal lung cancer, this was really tough in many ways, I desperately wanted him to get better or at least to be well for long enough to meet our little one, but unfortunately his body was not strong enough to fight the cancer this time.
He had already survived lung cancer 10 years before but that had resulted in him having one of his lungs removed. The intervening years had been a really positive time for the whole family, like a second chance at life for him, and an opportunity for him to rebuild some of the relationships that he had missed out on through years of working long hours on a factory shop floor.
But the first cancer had left his body to weak to hold on to life, as the pregnancy came to an end so did his time with us. During the last week of the pregnancy as I approached my due date he was beginning to lose consciousness, I prayed that he would hold on for long enough to meet his latest grandchild but it wasn’t meant to be.
On the night of my due date I was booked into the hospital for an induction. We had been in the waiting room for a few hours when we realised that there would be no bed available on the induction suite until maybe 3 or 4 am, and so we asked if we could go home and be with my family. We had only left the hospital for a few hours when my mum called to say that he his breathing had slowed and that he had passed away peacefully. So in the middle of the night we drove to my mums house and spent the rest of the early hours together. By the time the hospital did call at 5am to say that my bed was ready and I could still be induced if I wanted to I told them that things had changed and I was going to wait a little longer.
Thanks to Easter weekend and May bank holiday it too almost 10 days to arrange a funeral date. Lillie stayed put both of us growing ever larger. My hands and feet were incredibly swollen, I had outgrown even my largest maternity clothes and by the day of the funeral the only shoes which would go onto my feet were my husbands work boots. The funeral was beautiful and a really special time of family closeness and support. I am sure my dad would have been proud of us especially as the meal afterwards was in a local carvery, one of the only places he enjoyed eating out at.
Although the labour pains started on the morning of the funeral, Lillie finally put in an appearance 3 whole days later when she was delivered by emergency c-section. She was long and thin and managed to weigh in at an incredible 10lb 3 oz.
Our pregnancy with Charlie started out in much the same way, I was large and tired and grumpy, and having a 2 year old it was more difficult to take care of myself, but that was to be expected. At our 20 week scan the radiographer was concerned that there was a small cysts developing in his brain, she asked us to come back a week later to have another scan on a better machine with a more senior member of staff. I googled the cysts and learnt that their formation was a normal part of a babies brain development and that their presence didn’t really mean very much at all.
Charlie’s scan with Lillie’s finger, that night she went to bed holding the photo, of her already very much loved sibling.
When we returned for the second scan, the doctor found that there were 6 of these cysts in his brain and also a calcium deposit in his heart. The doctors were very concerned, they also seemed to be quite annoyed with us that we had turned down the blood test for Down syndrome which is offered earlier on in the pregnancy. We explained that even if we found out that the baby had Down’s we would never choose to terminate so we didn’t really see the point in having the test. The doctors continued on saying that they were not just concerned about Down’s but that because of the markers they had seen on the scans, they could now tell us that Charlie had a 1 in 10 chance of having a very serious genetic condition such as Edward’s syndrome which would mean that he would be stillborn or if he did survive the birth that he would die within a few days.
They felt that the wisest thing for us to do would be to have further tests, and an amniocentesis, they impressed on us that it would be important to do this immediately as the window of opportunity for a termination before 24 weeks was very short.
I was shocked, we had already told them that a termination was not an option, even if the baby did turn out to have Edward’s or something similar, that we would continue with the pregnancy. We said that we may consider an amniocentesis later on in the pregnancy if we decided that we did want to have the information before birth but that we would not consider it before 24 weeks for 2 reasons, firstly in the small risk that it could cause a miscarriage and that before 24 weeks the hospital would be powerless to save the child and also we didn’t want to hear anymore about terminations.
I had that horrible feeling of time standing still, the one where you can clearly remember the room and how it looked, where you were sitting, the colour and smell of the place, stupid detail like which posters were on the walls or leaflets on the tables, like it is burnt into my mind. The doctor who was with us (the one with the horrible black boots that are also burnt into my mind for some unknown reason) simply told us to enjoy the rest of our pregnancy and left the room.
I would like to say that I joyfully returned to work and got on with enjoying the rest of my pregnancy and convinced myself that 10% was a really small number, that my faith carried me through without so much as a moment of worry about what it would be like to have a severely disabled child or how I would explain to Lillie that the baby that is coming to live in our house might not actually ever make it home. But that would be a lie, even with lots of faith and a strong support network of family and friends some things are still really hard to carry. Our faith does not shield us from the traumas of this life but it does give us someone to turn to when our strength is failing us.
Within a few weeks of the scan a second blow came when my maternal grandfather was diagnosed with the exact same cancer that my dad had died of 3 years earlier, it was in the exact same place in his body and I was in the exact same time of my pregnancy.
While I was still wondering how on earth I was going to do all this and still hold things together our landlords gave us notice that they would need us to move out of the house we were living in within a few weeks of the birth and find somewhere else to live.
I honestly do not remember how I got through the weeks surrounding christmas and new year, we somehow put in a mortgage application and viewed only one house to buy. We had an amniocentesis at 34 weeks and when the results came back all clear at 36 weeks I fell apart emotionally not really understanding the weight of what I had been carrying around with me.
We packed boxes ready to move house right after the birth, exchanged contracts the day before Charlie’s due date, and completed when he was less than 2 weeks old.
This photo was taken the day after charlie’s birth, it is an incredibly emotional image for us and we have it blown up as a canvas on our wall. It is Charlie’s tiny new born hand holding onto his great grandfathers, for us it is a miracle that on that day they were both well enough to be able to enjoy eachothers company.
It is a reminder to us of God’s faithfulness no matter what challenges we face. Although we may hold onto his hand with all our strength, like a baby instinctively grabs onto a finger, what we often don’t see is that outside of the frame of the photograph his strong arms are cradling us holding us safely and gently.