Evan is Alec’s big brother. He has just turned three, but was just under two and a half when Alec was born. Ironically (?), about ten days before Alec arrived, Evan and I were travelling in the car and he said to me, “Mummy, the baby is coming out your tummy 5 o’clock. The baby is sweet. The baby is adorable.” He was very excited about having a baby brother or sister and had plans to tickle the baby, make him/her laugh and share his toys with them. I’m going to begin to reflect (this is Part 1 of BROTHERS; I have no idea how many posts there will be) on navigating the NICU with an older sibling, both the beauty and the trauma of it, the heartbreaking and the precious.
We initially weren’t sure about whether to bring Evan to see Alec in those early days because of how he looked. However, as there was a strong chance that Alec might not make it, we came to the conclusion that Evan needed to meet his brother and we needed to have a family photo. It was the best decision we made. It was Mother’s Day, and Alec was one day old:
“Came through the doors of the ward, gave me a huge cuddle: “I’ve come to see my Alec.” On seeing him: “I am Evan. I am your little brother.” Understood that this is the baby that was in my tummy. “He’s got a new bedroom.” Given a nappy to keep. Talked lots about the wires/medicine and his Peter Rabbit. “Hello baby.” Not keen to touch him, seemed to find it a bit much. Just wanted to look at him all the time, prayed together. Very sad to leave him. Wanted to see his strawberry [Evan has a strawberry birthmark on his hip so thought Alec did too]. That evening he said: “My brother Alec is lovely and very special.” And then prayed at bedtime: “Get better Alec. No more medicine.” (6/3/16)
Being split in two
March 5th 2016 began for me 5 months of feeling guilty wherever I was, whichever son I was with/caring for. It started when Alec was a few hours old and we had to choose for Sam not to travel on the ambulance with him to Addenbrooke’s, so that he could go home and tell Evan he had a little brother. This was so important, but when does a parent ever not travel with their child in an ambulance??? Sam and Evan headed to a toy shop where Evan selected a Peter Rabbit for his little brother’s incubator. A few days in, I realised that the best case scenario, i.e. Alec surviving and one day coming home, would mean weeks/months apart from Evan. I didn’t live with him for over 3 months. “Torn between sitting “uselessly” at bedside when could be with Evan actually doing stuff – and then the horrible thing of leaving Alec alone – under no other circumstance would I leave my child alone in hospital.” (18/3/16) The early weeks, we absolutely had to be with Alec all the time; making decisions, often needing to talk to doctors and consultants and discussing the next plan for treatment etc. Then came the stage when Alec needed to just lie there and grow, and that’s when I tried to have a bit more time with Evan. Then we needed to get feeding established so it swung back again.
Bonding in absence, and having lots of fun without Mummy and Daddy
My older boy moved in with grandparents and was cared for wonderfully by the whole family, who played a huge part in helping him navigate and understand what was going on, bringing him to visit, doing lovely activities with him… But, we missed him. It’s here where we give a big shout out to both our families who looked after our big boy for us. We’re so grateful for the way in which they helped him bond with Alec – photos by his bedside and at the dining table, making play dough models of the family, bedtime prayers… It just wasn’t possible for him to see Alec every day – it was a long drive, the hospital environment was fairly boring for him etc etc, so doing lots of things to help him keep Alec in mind was really helpful. Also they all just had lots of fun with him! Gardening, painting, baking, duck feeding, walks, the park, I could go on.
Having to be brave
Alec was just over 4 weeks old when I felt confident enough to go home overnight for the first time. Evan had come for the afternoon with my parents and I was going back with them. My bag was packed and I was looking forward to a long bubble bath and a glass of chilled white wine. Evan was looking forward to mummy putting him to bed. Just as we were about to leave, we heard that Alec’s bowel had perforated and he was heading straight to theatre for life-saving surgery. Obviously I wasn’t going anywhere. We went to the car to see them all off: “We had to send Evan home. “Mummy in the car too?” I crouched down to explain that Alec was very poorly and I needed to stay with him. Evan sighed, “Okay mummy.”” (3/4/16) In that moment my heart broke a little. He knew and understood that Alec needed me, but I would have probably found it easier if he had just cried – he was making himself be brave.
The nurses were amazing in including Evan when he came to visit. They were always giving him bits of equipment (breathing masks, temperature gauge stickers, feeding syringes, gloves) to take home and play with. He has a doll called Daniel and he played with him, using his doctor’s kit and the bits of equipment A LOT during the few months Alec was in hospital. Often, the wires and equipment that Alec needed at the time, Evan would mirror with Daniel, and as Alec gradually lost the wires, so did Daniel. On one special day, the nurse encouraged Evan to get really involved: “Evan visited and Rachel allowed him to put the incubator lid up and touch Alec. He held his hand, Evan also put a milk soaked cotton bud to Alec’s mouth and he “licked it”. Evan said “thank you doctor,” to Rachel! This was a special family moment.” (11/4/16) Moments like this were so important to Evan, as they helped him to feel more attached to Alec, rather than just gazing through the plastic. The play specialist did lots of activities with Evan and left craft activities for him to do when she wasn’t there, some of which got displayed in the corridors, some were for Alec’s incubator.
I have cried several times while writing this post. When I look at the pictures of Evan, I can see how much growing up he’s done, and what a chunk of his life I feel I missed out on. When I think about what we actually had to do, in terms of splitting ourselves between the two of them, I cry. When I am reminded of how brave and strong they both were, I feel overwhelming pride. When I remember the moments of Evan saying something cute and brightening a nurse’s day (“The Peterborough doctors are beautiful” is a favourite!), or a “first” that he experienced with Alec, I hold them as some of my most treasured memories. When I watch the pair of them now, Evan sometimes the only one able to settle Alec, Alec looking out for and wanting his big brother, I can’t quite believe how far they’ve come.