As I sit out on the back deck of my mother’s house, Audrey is on a blanket beside me grabbing, grasping and gnawing at her toys. Jakob and Ella are tossing a beach ball back and forth while Ella stands in an inflatable pool and the only thing missing is Daddy, who instead of being here with us, is in Edmonton…in the rain…unloading all of our belongings from a U-haul truck and filling the rooms of our new home with the help of his family – for whom I am very grateful.
A lot of water has passed under the bridge this month. The glacier has thawed and the river has been turbulent yet life giving all at the same time. It’s hard to know where to start.
Stress levels were already high going into June. We knew that we would be packing up our house and moving our belongings to Edmonton at the end of the month, which in and of itself is enough stress, never mind doing it with a four month old and a child who is still mentally a toddler at times.
Oh, and did I mention that I didn’t want to move in the first place? That being said, by June, I found myself coming to peace with our decision and making progress through the grieving process. Life has to go on.
June taught me a lot. Do you know when you are going through a hard time and someone, or multiple people say, “What doesn’t kill you only makes you stronger.” And then you want to punch them? I can honestly admit that in June, I may have seen some of the fruit of that phrase…finally. Never before in all of my life have I had to employ so many coping strategies to keep myself from falling over the edge – an edge on which I lingered pretty much every moment of every day. An edge that made me begrudgingly experience trust. Many people think that trust is something that you employ out of your own freewill but I would argue that sometimes, you have no choice and are forced into it. Some might say that I do not trust but as I said to Ben at one point, “I’m putting one foot in front of the other aren’t I?” I didn’t want to go forward but then again, I couldn’t go back and I was forced to trust. Through this trust, however, I saw firsthand how even though a situation seems impossible and it seems like NOTHING is working out the way you planned, sometimes, just sometimes, something even better can take its place.
After we Ran Up For Down Syndrome, we celebrated Ella’s sixth birthday. I don’t often throw huge birthday parties…in fact, last year, I invited a few friends over for a last minute backyard BBQ. But this year, I felt that Ella’s birthday party was not only a chance to celebrate Ella but also to celebrate and thank all the people who have invested in her this past year. Needless to say, the whole class was invited including her teacher and her aid as well as many other friends. It was perfect. We had it in the parking lot of University Chapel. It had all the ingredients for a great party and no more. Bubbles, friends, a space to play, hot dogs, an ice cream sundae bar and cake.
The next day, Ella had dental surgery. We had been anticipating this for a couple of months. We were also anticipating the $3000 bill that we would have to shell out for said surgery. She was to have the surgery at a private clinic in Vancouver on the 16th of the month but at the last minute the surgery was cancelled because of Ella’s atlanto-axial instability. This is common in individuals with Down Syndrome and simply put, causes extra movement in the joints of the neck. Because Ella would need to be put under general anesthetic for the procedure there would be a significant risk should she need to be intubated. Instead, we were referred to BC Children’s Hospital. I was devastated. You see, the waitlist for the children’s hospital is at least six months but we, obviously, don’t have that long. I wondered what the point was of even trying but we went to the consultation anyway. We explained our situation and they put us on the cancellation list with priority status. A couple days later we got a call and had just a weekend to make sure we were ready for day surgery on the 15th – a day earlier than the original surgery and, because it was done through BC Children’s Hospital, it was only half of the original amount quoted to us.
We continued to pack and try to tie up loose ends here and there. Final ballet class, final soccer practices, final school activities. All the while, the concrete between our house and the house next door was being jackhammered and removed. Trenches were dug to replace gas lines. Our yard was a disaster. There was constant noise, dust and chaos. And then because we didn’t have enough to do, I agreed to do an interview for CBC’s The National. How could I say no really? They were doing a story on an image of a child with Down Syndrome that was used for an genetic testing ad without the consent of the family. A friend had referred them to me and I was happy to oblige. I’ve been given a voice and this friends, is such a huge blessing. It was an honour to speak on behalf of the Down Syndrome community.
As parents of school age children are accustomed, the last week of school was full of field trips to the beach, parties, plays and good byes. I wondered how I would ever make it through…but we did. And on July 25th after the last day of school we moved into my mom’s house. Friday, we went back to the house to pack all the odds and ends and was panicked to find two steps missing from the stairs up to our front door. Again, panic. Again, trying not to freak out. Again, trying to breath deeply, Again trying to trust. Lo and behold, Saturday, we returned to three proper height steps to replace the too high two steps that we had put up with for the past year and a half. The hiccups didn’t stop until I said goodbye to Ben on Monday morning, when he set off for Alberta but it all turned out fine. It was finished. We are moved.
Another chapter of our live comes to a close, and a new one begins and I hope. I hope for better. I hope for contentment, I hope to carry with me the lessons I learned in June.
And I enjoy my little ones and savour these precious moments in this one beautiful life.