Dear Timothy

A letter to my baby boy.

Dear Timmo, Tiny, Teeny, Timotee, or one of the many silly nicknames you get called:

I can’t believe your first birthday has come and gone already. When I think about your first year it feels so long and stretched out and like it went by so quickly all at the same time.  

Newborn Timothy wrapped in a white  blanket with blue stripes with a soother in his mouth. He has an iv in his right hand and his eyes are open forward.
Newborn Timothy.

Timothy, you entering our family changed everything for us in so many ways. You are the first boy in our little family but also the first grandson on both sides of the family so there was a lot of excitement to have a little man join us after so many (adorable) little ladies.  You are also what we plan to be (never say never) our final baby and the completing piece of our family. And then of course there is the fact that you were born blind.

I was so excited to be having a baby boy but also very nervous. I have 2 younger sisters, I have 6 nieces, and I have your 2 sisters. Girls are kind of what I’m used to. I wasn’t sure if our bond would be different than the one I had with your sisters, and quite quickly after you were born I learned that it definitely was different but not in the way I expected.  There is something about being a mom to a little boy that is a whole new kind of magic.

Timothy at a few months old laying on the floor beside his dad. He is feeling his dads face.
Father and Son.

Your presence had a sweetness to it from the very beginning and it is what I love the most about you. You are the best at cuddling, always getting so close and curled up against me or dad (or some of your other favorite snuggle buddies) and letting us soak in all the baby love you have to offer. You never want to be too far from us and I love watching your little hands reaching out to find us and pulling yourself closer.

A very close second to your sweetness is your pure joy. Your smile lights up the room and your laughter is contagious (even more so than COVID-19). I would do just about anything to make you laugh your deep belly laugh and see that bright smile on your face. When there were tough days during the months we were awaiting a diagnosis I remember that every time you would smile I knew that no matter what you are the perfect little boy for our family and that you will be just fine.

Timothy at 8 months old smiling and playing in his exersaucer.
Smiles.

Watching you grow this past year has been the greatest privilege and blessing. You have changed everything in our family and made us stronger, kinder, and more determined people than we were before. Most importantly you have taught us about love in ways we never could have imagined without having you in our lives.

The way you trust us to catch you whenever you decide to be a little braver than you’re ready for shows me that we are doing a good job because we are your safe place. And I hope as you continue to grow and learn and get even braver, you will know that you can always trust us to catch you. We will forever be your safe place, your biggest fans, your greatest supporters, and your loudest advocates. We love you so much buddy, just the way you are.

Timothy on his first birthday leaning mouth first into a corner of his blue birthday cake.
Timothy enjoyed his birthday cake.

Love, Mommy

Speaking Out of Turn

Comments & Compassion

Wow he’s so sleepy he can’t stop rubbing his eyes. Does he have something in his eye he keeps rubbing it? Awe he’s fighting so hard to stay awake that his eyes are rolling. Is he okay? His eyes are rolling. You’re just too busy looking all over the place to look at me aren’t you baby.

James back is to the camera as he is walking forward. Timothy is on his shoulder, eye directed upwards to the ceiling which was full of lights.
Chilling with Dad.

These are the types of comments I get from people every single time I go out with Timothy. And I know they are harmless but they can be difficult to navigate. Sometimes I just smile and nod or give a non committal response. Other times I say “actually he’s blind”. It’s funny that when I choose that route I usually get a look back like I’ve offended them, I try to chalk it up to their embarrassment for speaking out of turn but some days it still stings to see that look.

Sometimes what I wish I could say to these comments is “mind your own business” or “why are you watching him so closely” but I know that’s my own uncomfortable feelings now speaking out of turn. It’s such a confusing thing for me to decide when and how I talk about Timothy’s condition. I love sharing our story on here and I love spreading awareness and speaking on the importance of being inclusive. But when I’m just running to Sobey’s to buy a block of cheese I don’t necessarily feel like I need to tell the elderly lady behind me in the check out about Timothy being blind. When I decide not to share I usually leave feeling frustrated with myself and questioning my own motives. Am I embarrassed of Timothy’s blindness and blindisms? Of course I’m not. Is every single person entitled to our story? Not really but they also weren’t meaning to say something hurtful. Am I doing Timothy a disservice by saying nothing? …I might be. Now I might not be too but a part of fighting stigmas and raising awareness is sharing your story. Rare diseases as a whole are really not that rare if you start listening to other people’s stories. Truly the best way to make it normal for someone to not be “normal” is to talk about disabilities and conditions like they aren’t something taboo.

And it’s not just strangers I get offhand comments from. I often get different but similar comments and questions from friends and family who know that Timothy is blind.

Melissa holding baby Timothy. Melissa is smiling towards the camera. Timothy has one eye looking forward and the other turned inward.
For every forward “looking” photo there are 10 of these.

It doesn’t look like his eyes are moving around as much today. He seems to be looking at the camera in most of his photos. Are you sure he really has no vision? Why do his eyes even move and work (blink/close his eyes to sleep) if he can’t see? Hopefully they can find a way to fix him.

These ones I feel obligated to respond to because first off they are usually from a family member and secondly there’s no such thing as a stupid question right?

For those reading my advice would be that if you feel the need or desire to comment on or question something you see a child doing in public please remember to do so with compassion and with an open mind because the response might be something completely different than you expected.  As a parent of a special needs child I am usually happy to answer or respond, but it is my child and your responses to me sharing our story do affect me.

These types of comments and questions no matter where I go can often be overwhelming and tiring. Now don’t get me wrong I do love advocating and educating for Timothy 95% of the time but there is 5% of the time I just don’t feel like getting into those conversations with people. I know a lot of my feelings around it come from my own processing and dealing with all the information we have learned about Timothy over the past several months. As I become more comfortable with our diagnosis I do see the benefits in sharing outweighing the negatives more and more and I also learn more everyday to not let the comments or the weird looks throw a wrench in my day. But as a gentle reminder to all, parenting is incredibly hard and vulnerable in any circumstance and compassion goes a long way when inquiring about something you notice a child doing.

Timothy laying in his bassinet with a blanket and sheep stuffy. Timothy is rubbing his right eye.
Franceschetti’s Oculo-digital sign.

Thank you for taking time to read this post and sharing this journey with my family.

Dear Hailey

A letter to my first baby.

My Hailey,

It feels impossible that you are already 6 years old (a third of the way to adulthood!) yet I cannot think of a time when I did not have you in my life. Some days I can so clearly remember the way your voice used to sound when you were just learning to talk and your little toddler quirks. Then other days I feel like I look up and you have changed completely right before my eyes. Being a mom can be so conflicting because I am constantly torn between wishing you wouldn’t grow so fast and being grateful that I am lucky enough to watch you grow.

Hailey at 3 years old. She has brown hair and is wearing an Ariel themed bathing suit. She is smiling standing in front of a waterfall.
My adventurer.

 You will always hold an extra special place in my heart because you are the one who made me a mom and completely changed my world. Ever since I saw those two pink lines I knew you were meant for me (even though I was only 18). I cherish those first couple years when we got to spend every day together. Those years made me fall in love with being a mom and built a bond between us like no other.  Raising you has made me into the person I am today and given me the confidence to add two more children to our family.

Melissa a 25 year old with long blonde hair and brown eyes with her daughter Hailey a 5 years old with brown hair and brown eyes.
My Hailey.

We have been a team since the start and your grace in our ever changing family has amazed me. You welcomed an awesome dad who loves you so much into our family at such a young age and then quickly gained two little siblings. Watching you the past two years as a big sister has been the best experience yet. I love seeing my baby girl evolve into a kind, caring, and compassionate little lady. The way you have adapted to having Timothy in our family has made me so proud of the person you are becoming. You embody acceptance and inclusion because you view Timothy no different than anyone else while simultaneously being considerate of his needs. Every day with you I learn something new and gain more hope for the future. I cannot wait to see where this life takes you because I know you will do amazing things.

Hailey with her brown hair down, wearing glasses and a purple shirt. She is smiling beside her brother Timothy. He has blonde hair and is wearing a Canada Day onesie.
Best Big Sister!

Hailey, you are the leader of our little pack, our comedian, our adventurer, our sensitive heart, and most importantly our big little girl who we love unconditionally. Never stop being you.

6 year old Hailey with her brown hair in a pony tail, wearing glasses, and smiling.
This is 6.

Love, Mommy