Aunty Mommy Guest Post

For those who don't know me, I'm Melanie 👋 - Chantale's twin sister, and known to Little Bee as Aunty Mommy 💕

Little Bee and Aunty Mommy

I've been thinking about writing a guest post for a long time. I have so many thoughts, emotions, unsolicited advice, rants, stories, etc. etc. etc. that I want to share, but don't know where to begin. So, what follows is a little bit of all the above, but mostly just Auntie Mommy's stream of thoughts. There's lots more where this came from, so I expect you'll be hearing from me again soon.

Little Bee

Beckett is my fave guy. Seriously, I just can't get enough of his sweet little face. But he's so much more than just a cute face (he does have the cutest face though). 

Just cute

It has been such a joy to watch Beckett grow and learn new things. Yes, he is behind, but I could not be more proud. His usual day is filled with more exercise and physio than a professional athlete (probably. I actually have no idea what professional athletes do, but let's go with my assumption). He of course gets play time, but that's worked into exercises for sitting and four point, and very intentionally improving his gross and fine motor skills. It is hard work for his parents and caretakers alike, but hard work that pays off. 

Some days you see it more starkly than others - it's like, BAM, some neurons in his brain connected and he's figured something out that he's been working on for months. Sometimes it's slower and harder to notice the change if you see him regularly, but it's amazing nonetheless. 

Beckett is working on independent sitting, and he is doing great fighting his body's automatic and intense hyperextension which makes sitting and balancing really hard for him. He will sit and crawl later than the average child. But he will have overcome mountains to do it. If he walks (which I personally have no doubt he will) he will do so later than "usual" - but he will have worked harder than any usual kiddo to do it and I will be there cheering him on (as I know you will be too)! 

Here's some of my favourite Beckett traits that make me smile all the time:

1. He loves lights. We have this weird light in our kitchen that looks kind of like medusa, with lights at the end of each "tentacle". Bee can't get enough. If he's at the table, turning the light on and off never fails to get a big grin. Often a squeal of laughter too.
2. His goofy laugh. I don't really know how to describe it. Sometimes it's a squeal, sometimes it's sort of a funny inhaling noise. It's hilarious. You can almost always get him to laugh by taking his plate and holding it above his head, and then tapping or stirring the plate with a spoon or fork - he thinks that it is the funniest thing. 
3. His determination. This one is probably obvious based on what I've already said, but damn is he a hard worker. In the last few months he's hugely improved his grasping and aim. You can see the focus and determination in his face when he wants to pick something up - Ok, there's the spoon, hand needs to be open, aim, oops a little left, there, now grasp. Oops. Try again. Ok, got it. Now to bring it to my mouth. Oops. Albus can eat that... (That's my take on his inner dialogue, in case that wasn't obvious). It's this unwavering determination that makes me know this boy is going to go far in life.
4. He doesn't care what other people think. He's different. So what? Different is just...different. I hope that he keeps that whatever kind of attitude. There will undoubtedly be times when being different is going to be really hard and probably feel pretty sucky for him. But it doesn't mean he can't do things, can't play or enjoy life. He just might do it differently than others. 
5. He's easy going. Maybe it's from seeing so many specialists all the time and from such a young age, but he has no stranger danger. He's cool in new environments and with new people. He does not take after me and my social anxiety, that's for sure. 

Looking out the camper windows

Navigating Grief and the Grief of Others

Before Beckett was born, I had never thought too hard about the emotions at play when a child is born or is later diagnosed with special needs. It's so complicated. There is joy there, because you have this beautiful new human in your life and that is always joyous. But there is also a sense of loss and grief. Grief over this vision of what his life was supposed to be, and likely won't be. Loss of what should have been. Sadness over how challenging his life is going to be, and that of his parents. There is anger about how unfair it is.

I can't even begin to imagine how much harder those feelings are for the parents of special needs kids.

When Beckett was born and we learned that he had suffered brain damage, I was heartbroken - for him, for Keith, for my sister. There were no words. There are still no words. No one should have to grieve when their child is born - it's not fair.  

It seems to me that people quickly forget about others' grief. Or maybe forget is not the right word - perhaps they just don't think about it. Chantale will often leave one of Becks' specialist appointments feeling upset or angry because the specialist asked if Beckett is walking yet (or if he's met some other milestone that a neurotypical child might be meeting around his age). Why? Why would you ask that when you know, particularly as a medical professional that has his whole medical history, that he is not a neurotypical child and is on a completely different timeline than the average child? Chantale and fam don't need a reminder that he is behind. They are reminded every time they see other kids playing on the street, every time they see babies around him take their first steps, playing independently, or drinking from normal sippy cups. 

Chantale handles it all with grace. Sure, she gets stressed, worried, and anxious, and it shows (which, in my view, shows her own mastery of where she's at - you should not have to try to hide your true emotions to make others feel more comfy). But she does not fault others for their joy and happy stories about their kids - she wants people to feel safe talking about their happy lives around her. What I ask, if I may, is for people to be sensitive. 

We were at a spa the other day, celebrating Grammy's birthday. Chantale and I were waiting for our treatments in the spa lounge. There were two other women talking pretty loudly, maybe 10 feet from us. Their convo suddenly turned to the story of one of their sons being born, and right at that moment I was hyper sensitive to a shift in Chantale. She felt a little tense and anxious - I checked in and she said it was fine, and that people should be able to share their birth stories with their friends. The ladies' convo turned into the trauma of the birth, and how the doctors thought they might need to use forceps and worried that the baby was at risk of suffocating. That was a bit much - for one thing, it's just not a great topic for a relaxing spa lounge, but more importantly, Chantale was visibly upset. I asked her repeatedly if she wanted me to tell those girls to please discuss something else (actually, I was like Timone in the Lion King, let me at 'em, let me at 'em) but again Chantale handled it gracefully and let them share their stories with each other. 

I was mad though. How dare those girls not notice they upset Chantale, and in a place that is supposed to be peaceful and relaxing, no less! Objectively, I know it's not those girls' fault - they had no way of knowing that someone in the room would be triggered by the story, and that someone in the room had suffered the grief that they had feared they might face - but they didn't even think for a moment that their words might be triggering to others. Also, I realize that the story was not meant for us - but it was a very quiet, zen room, and a very loud retelling of the story, so it was obvious to them that everyone could hear. 

Anyway. That was a long rant. Here's the point I'm trying to make: you never know what other people are going through. Chantale is not a delicate flower, and she can handle more than most. But I would just say that it helps everyone to acknowledge, and be aware of and sensitive to, the grief or other emotions that might arise. 

Exciting Project in the Works

I struggle with the fact that most things Beckett-related are out of my control. All I can do is be there to support Chantale and Keith, and of course Beckett. I will always be there. But I've been looking for opportunities to do more since the day he was born. Maybe even before. Being Aunty Mommy comes with responsibilities!!

My aunt Suzanne came to me with a proposition - an idea on how we could help Chantale and Keith (and Little Bee) by funding some of the costs that come with his special needs (weekly physiotherapy, therapy intensives, aids or caregivers, special equipment, etc.). These things aren't cheap and add more stress on top of everything else in their lives. Enter: Little Bee Gallery.  Suzanne and I are both painters, with a dedicated fan base of mostly family and friends. Little Bee Gallery was formed as a way for us to sell our art (and maybe other artists' work if they feel like helping out Little Bee) for the benefit of Little Bee. We donate our time and our artwork, and all the proceeds of the sales will go directly to Beckett's special needs care. 

We are SUPER excited to officially launch Little Bee Gallery in the next month-ish - stay tuned for more. If you or someone you know might be looking to buy some original artwork, I would ask you to check out Little Bee Gallery and see if anything tickles your fancy - all purchase will make a big impact in Little Bee's life.  

You can stay up to date by following our Instagram page here; our website is currently in the works, but keep an eye on it here. 

That's all for now.

xox Aunty Mommy