Due for a Change
So, here we are. A week away from the due date of our third child. I am currently enormously pregnant complete with sore hips, constant tiredness, the inability to rise from the couch without help, and water retention that is making my feet look like Fred Flintstone’s. I am at the point in pregnancy where every time I call someone they answer the phone breathlessly and ask, “did you have the baby?? Are you in labour?!!!”. I see on the calendar that we are creeping closer and closer to when the baby will arrive, but emotionally I know my body is still hanging on to this baby. Our midwife joked that she feels like he may never come out if I don’t relax a bit. Aimee and I had a 38-week ultrasound last week and saw the new baby’s face. It looked like Stella’s newborn face. Same chubby cheeks, same turned up nose, same hair (although we don’t know the colour and doubt it’s red, the little bits of hair sticking straight up were the same as Stella’s). Seeing the ultrasound made me want to cry. Tears of happiness, sadness, fear. I am overwhelmed with emotions, feeling excited and happy and nervous and terrified all at the same time. Feeling like I can’t believe we are here. Wherever “here” is.
When Aimee and I decided back in early November to try to get pregnant again, Stella was 5 months into her DIPG diagnosis and losing her physical capabilities quickly. Fall was when we saw her lose her ability to walk, talk, swallow very well and use her left hand all in a matter of weeks. It was not an option in my mind that Stella would still be here 9 months later. That would be crazy. That would mean all the expert Doctors, the best in the world were wrong. That would be inconceivable. That would be impossible. That would be…so Stella. I should have known. Aimee knew. She kept insisting it was a possibility Stella would still be here, despite my eye-rolling and dismissive hand waves whenever she brought it up. Aimee kept reminding me it was a possibility, even as I refused to believe it. She was right. Here we are on the brink of having three children. I am terrified. I keep asking Aimee, “how are we going to do this?”. I keep thinking about how it’s going to be possible to manage to give Stella all the physical, mental and emotional attention she will need when we have an active 9 1/2 month old who is crawling everywhere and needs more and more stimulation as well as a newborn with the sleep deprivation and neediness that comes with it. Aimee just keeps looking me in the eye and assuring me we will figure it out. I want to believe her and be as confident as she is, but I’m not there yet. I want to be able to give all my children the love and attention they need to thrive, but we are barely making it with two kids. Barely getting the cooking and cleaning and laundry done in between caring for the two kids we already have, balancing naps and meds and paying bills and…now three kids!??? It feels like something’s going to have to give. We have often spoke about how 13-months into Stella’s diagnosis we are feeling tired and as though our support people are also feeling the stress of having lived like this for over a year. Living each day to the fullest is a good thing in most ways, but it’s also an exhausting way to live. The pressure of not “wasting” any days, the guilt you feel if you don’t think you gave 100% as a parent each and everyday when you know those days are numbered, the frustration at putting your own life and wants and needs aside day after day after day, the difficulties in balancing trying to plan for the future, appreciate the past and live in the moment. It’s not easy for any of us and I fear that with the addition of a newborn to our already insane lives, we are about to push all the people who have supported us past their breaking point. And there is still so much of this journey left to navigate. Yet despite these feelings, we are so excited to meet our new son and to introduce him to all the people we love most in the world. We chose to have this baby and we have no regrets, despite our nervousness.
There have been so many lessons that Stella’s cancer has taught us. Literally hundreds of opportunities for both big and small lessons. But I have always felt as though the lesson that has been hardest for me to learn, and the one that keeps popping up over and over again, is how little control we have over events we feel entitled to control. And I keep thinking as things happen, “Okay. I’ve learned the lesson, I get it…” but then I get kicked in the ass with new things that pop up that seem to mock me and my continuous attempts to control anything at all, even as I proclaim I know I can’t. But how can you really accept that you are powerless to protect your children from horrible things? We are not raised to believe that.
I was giving a bath to Sam tonight. He was splashing in the water and having a great time playing with bath toys. My mind kept flashing back to when I used to give Stella a bath, back when she was his age. Stella also splashed, wonderment in her eyes as she kicked her legs and watched the water lap up against her knees. I remember Stella throwing the same rubber penguin in the air as Sam did tonight, and then trying to eat its beak. Sam is still new to the “big bath”, and kept clinging to me for safety and looking over his shoulder to make sure I was still there. At one point he turned around, flashed me a big smile while using my knees to pull himself up to standing, and wrapped his arms around me in a big hug. Instead of getting that warm, happy feeling that I should have had, my eyes filled with tears. I knew that in this moment Sam was completely trusting of me, dependent on me and looking to me to ensure he was safe. And I thought about how many times in Stella’s life she had turned to me with a big smile, waiting for me to give her that feeling of safety. To kiss her head when she keeled over learning how to walk. To pick her up when she fell trying to climb up the slide. To hold her in my arms while she fell asleep in a new place. To gently push her into the room with a reassuring smile when it was time to start a new daycare. And yet, when it came down to it, there was nothing I could do to prevent cancer from taking everything away from her. But she still looks to Aimee and I to keep her safe. I don’t know if she questions why she can no longer talk or move or play with her friends. I don’t know if she watches Sam crawl around and pull himself up on furniture and babble and wonders when she will get to do that again. But I know that when she is tired and wants to nap, she curls into my chest and closes her eyes. I know that when she first opens her eyes in the morning, she rolls them as far as she can to the left to make sure I’m lying next to her, ready to carry her to the couch for breakfast. I know that when she is unhappy she fixes her eyes on me and makes a whining, seal-like noise until I figure out what she wants/needs. I know she needs me and depends on me more now than ever. She has no idea how much I wish I could do so much more for her. She doesn’t realize the guilt I carry with me each day because she grew inside me and now she is dying. Aimee and I make sure she sees only our smiles and our delight in the smallest things she does, not the heartbreak that follows. As Sam leaned against me in the bath, depending on me to keep him safe, I was reminded forcefully that for Sam and his brother-to-be, we have so little control over ensuring they are protected despite what we want to believe.
Aimee and I can provide Sam and Flick with as much as possible to prepare them for what is to come, but life is so random. I can’t really stop bad things from happening. How frustrating. Why do all the parenting magazines and specialists try to make us believe that if we sign our kids up for the right programs, put them on wait-lists in utero for a good daycare/school and buy them expensive lead-free wooden toys, we guarantee them a good future? Sell that to S.L.’s family, who lost their vivacious and athletic 18-year old daughter when she was hit by a car that was momentarily blinded by the sun as she stepped off the curb. Sell that to E.Y.’s family, who has just had their toddler undergo over a year of painful chemo treatments, only to find out the tumor has continued to grow and they have another year of treatments ahead of them. Sell that to T. R.’s family who lost their beloved daughter to a random car accident as she was driving to the cottage for a fun family weekend. Sell that to the 150 parents a year in North America who find out their child has a DIPG tumor. It’s all bullshit. But then again, it turned out to be bullshit that Stella would only live 3-4 months after her diagnosis. It’s been 13 months and we just returned a few days ago from her Make a Wish Trip to Great Wolf Lodge in Niagara Falls. A trip that she needed to be three (according to the Make a Wish Guidelines) to be able to take. A trip we weren’t sure we could manage. A trip Stella smiled and laughed and swam and enjoyed thoroughly. A trip. That’s what parenting Stella has been like for the past three plus years.
Our family is due for big change in the coming week or so. And even though I’m scared, I know deep down that life does not get better with chance, but with change. Stella will meet her new brother, she will have had the opportunity to meet both her brothers before she dies. That is a beautiful reality, a light in the tunnel of darkness she is headed towards. We are having another baby. Another boy. Another opportunity to have a bright future as a family.
So here we go…again. The only truth I can cling to as we move closer to this new phase in our lives is that we will continue to take each day one at a time and do the only thing for each other that we can— love our children wholeheartedly, love them completely, love them honestly, love them for who they are. The rest, I trust, will come.
Make A Wish Trip to Great Wolf Lodge, June 26-28, 2012:
Sam, Stella and Xavier at Great Wolf Lodge wearing their new GWL T-shirts!
Gracie and Stella getting manicures at the “Scoops Salon”:
In the lazy river with Auntie Heather
The Great Wolf Lodge Crew (Sam, Aimee, Auntie Angie, Juju, Mishi, Stella, Gracie, Auntie Heather, Xavier and Uncle Daniel):
Happy Make A Wish, Stella!