When I started to plan the Growing Families conference I knew that I wanted to make it inclusive for those families who are facing additional stressors on their parenting journey. Having a premature baby, having a baby with a serious illness or a disability – these things add many challenges to the already life changing experience of having a child. Parents in this situation often report feeling as though they couldn’t take part in “normal” antenatal classes as their experience was likely to be so different from the other families present. And whilst there is a lot of focus on the medical issues faced by these children and their parents it can be forgotten that those parents will still be, first and foremost, mums and/or dads. And what about the grandparents? The aunts and uncles and friends? How do they get involved and fulfil their role in this growing family, when they may not fully understand the medical situation or the journey that their loved ones are on?
This is why one of the breakout sessions at our event in October is entitled Parenting Under Pressure. The session will be led by me, by Catriona Ogilvy of The Smallest Things and by Lynne Barton of Entrust Care Partnership. We will be exploring what happens when the parenting journey has these additional twists and turns, and anyone with an interest in, or with experience of, this is very welcome to join us.
What is my personal interest in this subject? Well my youngest son David has a congenital heart defect, Hypoplastic Left Heart Syndrome. Essentially the left side of his heart doesn’t work, it’s a waste of space. His condition is one of the conditions that you will see referred to in the media as the child having “half a heart”. What did this mean for our parenting journey? Well suffice to say he wasn’t born at home like his older brother was! No, David was born by caesarean section at St Mary’s Hospital in Manchester, spent a night in NICU and was then whisked off to Alder Hey Children’s Hospital at one day old. When he was just five days old he had open heart surgery, and he had another operation at five months. David is now two and a half, and he has one more surgery to go, probably when he is around three or four years old.
We have been incredibly fortunate. David is so healthy and strong, and has so far given us very little to worry about, as far as having a child with HLHS goes! But as you may be able to imagine, that is a very different scale from the scale of worry most parents face. For a start we have had to sit for six or seven hours waiting to see if our child has survived surgery. And we have had to do that twice. We have had to wait and see if he is able to feed orally or whether he would need to be fed through a tube in his stomach. We have seen him desaturate rapidly on ICU so that at one point he stopped breathing. We have seen him hooked up to monitors and with big tubes stitched into his chest to drain the fluid. And we have spent a fair few hours on our local children’s ward getting him checked every time he had the slightest snuffle. Which as you know happens regularly with even the healthiest newborn!
As I say, in the scheme of HLHS children, we have had it easy. But in the scheme of parenting as a whole we have definitely faced additional pressures. I have written so much about my experiences of breastfeeding David and the campaign that grew out of that. I have written about those early days and the shock and the stress. I have written about how milestones become all the sweeter when your starting point was not knowing if your baby would come home at all. But today I would like to share with you my experience of how friends and family can really make a difference when the pressure is on, and how grandparents, relatives and friends most definitely have a role to play to support families in situations like ours.
As I am sure you can imagine, there are some “don’ts” in these situations, things that parents would probably rather you didn’t do if they are facing stressful times. I think that this article on the “Silk Ring Theory” sums up so well the importance of giving support, but reaching out elsewhere if you need support yourself. Parents in these situations can barely support each other, and they are using every ounce of their strength to keep strong together and to support their children. If you need support, and as grandparents or close friends then it’s likely you will, please reach out elsewhere and don’t ask the parents to hold you up at this time.
But what about the “dos”? Well I can only speak from my own experience but these are some of the fantastic things that friends and family did for us, that made such a massive difference when David was in hospital:
- Do practical tasks: so many people asked me what they could do to help, and in reality what they could do was pick up those things on the “to do” list that needed to be done but which I just couldn’t manage. My eldest son needed a backpack for Playgroup – one of my friends sorted that. There were a couple of things we needed to have with us in the hospital – another friend sorted those. There were tiny tasks that on an ordinary day would have been no problem at all, but when your child is in hospital you do not have the headspace to even work out how to do them let alone get them completed. Our friends took those on with efficiency and made life so much easier.
- Cook! But please be organised about this if you can. One evening a friend of mine brought round a home cooked meal, and as she was there a relative also brought round some food and we mentioned that we still had something in the fridge from the day before. My friend quickly realised that we were going to be inundated with food and would no doubt end up throwing some away and then not having enough in the freezer. So she organised a dinner rota with our friends in the area. I cannot stress enough how amazing this was. Every single day delicious home cooked food was delivered to our house, and this carried on until a week after David came home from hospital. It only stopped when we said that we were okay to take on the cooking again. Not only did this mean that our eldest son was fed healthy food at a time when otherwise he would most likely have lived on toast, but it also meant that we were eating healthily. This kept us going, it stopped us from getting run down, it kept up my supply of breastmilk…. It was just the most wonderful thing.
- Accept the tone that the parents want to set. We are not doom and gloom kind of people. We are not melodramatic people. For us it was important to keep a positive outlook, take the good things as a win, to keep laughing and to face events with a sense of perspective. So we needed those around us to do the same. Anyone approaching us with drama and excessive emotion was not helpful, and we were fortunate that everyone did their very best to match our tone. For others the exact opposite could be true. If you need people to take on board the enormity of what you are going through, to understand the emotion and the heartache, then the last thing you want is someone bouncing in full of how you should “look on the bright side”. So please try to see what tone the parents are trying to set and understand that that is their way of approaching events.
- Accept what the parents can give you. When a child is in hospital there are so many people who are interested in how things are going, and for us we needed those people, we needed them to know what was happening and we needed them on our team. But there was no way that we could phone them all individually, update them all on a daily basis with personalised messages and long drawn out conversations. The only way we could keep people in the loop so that they knew what we were going through was to send out mass text messages and updates on social media. Even close family members often had to update each other via chain phone calls rather than each receiving an update from us. And we were so fortunate that everyone understood this and was just happy to hear from us as and when we could communicate. It doesn’t matter how close you are to a family, when they are under pressure please don’t assume that you have a right to personalised updates and messages. It just might not be possible.
I would like to say an enormous thank you, once again, to all of the people in our lives who helped us in those early days, and who are helping and supporting us still. The things you did enabled us to focus on being mummy and daddy, to focus on loving and nurturing our two boys whilst the medical team did their stuff. We may have been under pressure but you helped us to still be parents.
“Growing Families: Facts, Fiction and Other Stuff” is taking place in Manchester on Thursday 6th October 2016. For ticket price information and to book your place please click here.