It has been a rough holiday season. But it has also been one filled with happiness and love too. When we were in the hospital last week we didn’t know for sure when Seb would be coming home. I believed most certainly it would be in time for Christmas and even Christmas Eve. I wasn’t going to take the ER nurse’s word that it could be until then. And it wasn’t. We were all home to greet Grandma (my mom) and Papa (Jerry) when they arrived on Christmas Eve for the weekend. Sebastian had made it through whatever stomach issue had befallen him and though Tallula was struggling to get through her own illness, she would rally by Christmas afternoon and fully the day after. Ali too fell ill after we had our day/evening trip in Niagara and he hibernated upstairs for a full day and night. The kids had a lot of fun playing with their Christmas gifts with Grandma and Papa and we were so thankful they were here to celebrate with us (and take care of us too).
It was HARD when we were in the hospital with Sebastian. Some things were easier, like meal times. I didn’t have to keep to a schedule to make sure he was eating or being tube fed at a specific time. In fact, there was no schedule at all. Hungry? Let’s eat. Or rather take turns leaving the hospital room to get something to eat. Though no one really had an appetite, it was mostly just to keep going. When I was alone with Sebastian that first night and neither of us could sleep, I wrote and the next day after I shared what I wrote I had a support system that I didn’t even realize was there and I was so thankful to not feel so alone. I do not accept help easily or often. And I ask for it even less. I can hear some of you giggling and see you nodding your head as you read this. But in those moments of pure exhaustion and some fear (how can you not be afraid when you child is vomiting something they call coffee ground vomit which they explain is dried blood?), I just wanted to reach out to whoever was listening and accept that help. I wanted to not feel alone.
So thank you. Thank you for coming to the hospital and bringing us food, even when I told you not too. Thank you for coming to our home and bringing us food, even when I told you we didn’t need anything. Thank you for coming to pick up a bag of things to take to Ali and Sebastian, just in case they had one more night there. Thank you for coming to the hospital to visit Sebastian and make him smile. And his sister too. Thank you for coming to spend one-on-one time with Sebastian so that Ali could have a break and get something to eat in the cafeteria. Thank you for your texts to see if I was ok. To see if we were ok. Thank you for your FaceTime call; even when I almost didn’t answer it because we were alone – Seb and I – and waiting to move out of the ER into our own room and sometimes it’s hard to say ‘hey, I really do need your love and smiles right now.’ Thank you. Thank you for your messages and your prayers and your thoughts and your virtual hugs. That love was felt, three fold.
In those moments of being alone, I knew that it was easier not to have to keep to that schedule of feeding Sebastian. And I also knew that I prefer having it hard. I prefer the schedule and the food in the freezer and the Neocate in the cupboard. I prefer the fridge stocked with Silk Coconut Milk. And the special oatmeal with all of the extra stuff I put in to make sure it has enough fibre and protein and fat. I prefer the feeding bags and beeping pump and endless g-tube supplies. Because that means he’s with me. And I wouldn’t trade that for an ‘easier’ life for a second. In this life you meet, both online and in person, many parents that lose their kiddos. Sometimes you have really come to know them and their families and your heart breaks right open for them. It breaks open when they lose their child and also when their child is going through something difficult and is in hospital. While we were able to be home together for the holidays, we have friends who were not. We have friends who have lost their children and somehow move on to celebrate without them. Sometimes I read about a friend of a friend who has lost their child and my heart breaks open for them too. As a parent you have this fear. But when your child has medical and health issues, that fear is very real. You don’t even talk about it. You don’t even say it out loud to yourself. It’s not even something I want to write about. But it exists.
Our community is one we have found ourselves in and we are not only thankful for it but embrace it. Thank you for being a part of our village. Those of you near and far. Your love is felt and without it, well, it continues to help us take one day at a time.