Everything Has Changed

How I’m coping with the COVID-19 pandemic.

This past week the whole world turned upside down.

In a matter of a few days my jam packed March/April schedule was completely cleared and I now had to home school Hailey for the rest of her grade 1 year.  Though I know I should be happy to have cleared up my schedule I’m instead struggling with it because as I had said in a previous post these appointments are my new normal

Personally these dramatic changes made my anxiety scream.  I felt my mental load getting heavier. Now I have the responsibility to keep my daughter on track with school from home, and all of Timothy’s therapies are on hold so it is up to me to make sure he doesn’t fall too far behind on development.  On top of that is my normal everyday stuff like laundry, dishes, dinner, etc.

Oh yeah and I need to find ways to entertain all three children without being able to go anywhere…

One of the hardest parts for me was realizing we had to cancel Timothy’s first birthday party. This was hard for me on several levels. Firstly, both of the girls got big fun first birthday parties but with Timothy we almost didn’t plan one because sometimes crowds are too overwhelming for him, but after talking with other special needs parents we decided to have one because he is just as special and worthy of celebrating as the girls were. Secondly, we aren’t planning to have any more children and in a sense this party was my goodbye to the baby years. I put a lot of thought into making his party special for him and having to cancel it was a little heartbreaking.

Aside from my disappointment with the party, being a stay at home mom for the past year I have already felt quite isolated as most of my outings are to appointments or have to do with the kids. Now that I have no outings or appointments and to have to stay home entirely is pretty tough. We are lucky that my husband is still working because at least we don’t have financial stress added and he actually has more hours now, but at the same time it can be quite lonely not being around other adults all day.

These are crazy times in the world and it looks like the safety measures in place will be sticking around for at least a couple months.

Luckily I am no stranger to my life changing in a matter of days so I know that I can and will adapt to the situation. Now that the first week has passed and I’ve had some time to process these changes I am going to start focusing on what I can do to feel okay while the whole world is in panic mode. I thought maybe I would share some of what I am doing on here in hopes it can help someone else get through this hard season.

 I have found it quite important and essential during all of this to make sure I am taking a break from reading news updates online or even thinking about everything going on. There is a balance between being informed and needlessly obsessing over the news. I limit myself to one or two updates a day. I usually only watch our provincial update but sometimes I will watch the Canadian one as well.  As far as the kids go I am keeping them in routine with normal wake up times, nap times, and bedtimes but outside of that we have no set schedule. Hailey is only in grade one so we don’t stress about not doing school work every day and besides there is lots of learning that can take place without a classroom. Our main focus is enjoying the extra sister time the little ones get and keeping things positive. Losing school and all your friends is pretty tough for kids. Hailey came to me this week crying that she missed her before school hot chocolates with Grandpa. She is only six years old and all this sudden change is hard and confusing for her. So like I said we focus on keeping it positive; we get extra time together to learn, to play, to watch movies, to bake, this is a special period of time that most don’t get with their school aged children.  For myself I am doing my best to stay connected with friends and family through texting and other virtual means as well as take some self care time in the evening when my husband is home.

These are just some of the things I have started doing to get through this crazy time and I am not perfect at them; I still get negative, I get frustrated with the kids, I get mad at the situation, and I get upset.  The world changed so quickly and we are only human so all kinds of emotions are bound to happen.  The most important thing is that we will get through this.

Photo of Hailey placing Easter cookies onto a baking sheet with a plate full of baked cookies beside her.
Baking with Hailey.

Thank you for reading and stay safe out there ❤

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.

Home for the Holidays

Boundaries and Learning to say “No” at Christmas

Full disclosure, I have been stressing about Christmas since we learned that Timothy is blind (in August). This time of year is always so busy and there is a sense of obligation to spend time with everyone you know during the holiday season. Unfortunately I am a people pleaser and that sense of obligation usually has me backing down on any boundaries I set for myself during Christmas time but this year is going to be different.

Brown haired 6 year old girl in a pony tail and glasses smiling in front of the Christmas tree.
‘Tis the season.

Since Timothy is blind it is quite easy for him to get over stimulated and scared. Mom and Dad are really the only people he knows and being in an unfamiliar space with tons of voices he doesn’t recognize and people constantly touching him is not fun for him.  To be honest it is not fun for me either as I am constantly worried about how he is feeling, and dealing with him crying every time there is a new noise or a new person trying to hold him.

Aside from the fact those things are not fun, they are also not fair. Why should Timothy have to spend his first Christmas stressed out and uncomfortable? When it gets to the point of over-stimulation he can be inconsolable and the effects usually result in a cranky baby for a few days.  We have been in this position a few times over the past four months and I always regret not standing up for my family’s needs.

If there is anything I have learned about raising a special needs child it’s that I need to be his biggest advocate.  So when it comes to Christmas this year James and I came up with some guidelines for our family. I have decided to share these on here for other parents either with a special needs child or not (all families need boundaries) in hopes that others can see it is okay to say no in the best interest of your family (even to old traditions).

Curly brown haired two year old girl placing a green Christmas ornament on the Christmas tree.
Christmas Tree Decorating

These are the four guidelines we decided upon to help us get through the holidays:

  1. We are not going out of town: This is probably the biggest decision we made to cut down on holiday stress. Last road trip we went on Charlotte and Timothy each cried and screamed half the way home. Aside from the fact that young kids don’t want to spend half their day sitting in a car seat, we live in Canada where the weather is unpredictable and the roads are not always safe.
  2. We are not over committing ourselves: We definitely have made some fun holiday plans with family and are super excited for the kids to experience Christmas with their cousins. As much as we have a lot of Christmas events we would like to enjoy, we didn’t pack our entire break with plans so that we make sure to have some quiet family time and give Timothy (and the girls) a chance to relax at home between commitments.
  3. We aren’t spending tons of money: This is something we have done the past couple years but it’s important to bring up. We do not go crazy on gifts, actually we generally only buy for the children in our family (our own and our nieces). We usually go with a nice Christmas card and some updated kid photos for grandparents, great grandparents, and aunts and uncles. The first year we did this it was out of necessity and we had some comments from an extended family member on it (which did not feel good). Now that we are in a better spot I almost wavered on this plan but we decided our budget and savings plan is more important to our family’s future, as the children want to do more activities now and with all the upcoming costs for specialized items for Timothy. Christmas is not supposed to be about gifts anyway and I much prefer the time spent and memories made than an item that will be forgotten about quickly.
  4. We are advocating for our intended family’s needs: This one can be a hard one especially for families that are just starting out. When you get married and have children it can be hard to detach from your family of origin to make your own traditions and plans. Sometimes you decide to still partake in certain traditions all together and other times you don’t. For us, we are planning to be a part of several events with extended family over the holidays but only when it is in the best interest of our intended family. If someone in the family is sick, overwhelmed, or too tired we might cancel or leave an event early.  If someone we have plans with is unwell, we might reschedule to protect our children’s health. This year we are trying to make sure we do things that work for our family and that might mean keeping the kids close to their schedules for bedtime, and saying no if Timothy is overwhelmed and doesn’t want to be held by someone other than us.

These four guidelines we have set are not intended to make anyone frustrated or unhappy with us but instead are boundaries we created in order to have a fun and fulfilling Christmas. It is always okay to speak up for your needs and your family’s needs.

Lit up Christmas tree with a silhouette of a dad holding his infant baby boy in front.
Timothy’s First Christmas.

As always thank you to everyone who reads my posts I have loved making so many new connections and I hope you all have a Happy Holidays!

My Christmas Village

When I was pregnant I was so excited that Timothy was going to be a little older than the girls were for his first Christmas (the girls were November and December babies). I thought it would all be so magical and fun for him. Fast forward to December and I just can’t seem to get into the holiday spirit. This is where the everyday struggle for acceptance comes in. Do I know Timothy is blind? Yes. Do I know he will be okay and have an amazing fulfilling life without sight? Yes. Is it hard to set up a Christmas tree full of ornaments and lights and have Timothy not even turn his head in that direction? Also yes.

Christmas tree full of ornaments including little Elfs. Santa Christmas countdown Calendar in the background.
Oh Christmas tree.

It is hard to watch my daughters’ eyes light up when they see the Christmas tree and know that he won’t experience that. That sadness can sometimes weigh me down but luckily I have amazing people around me who can bring me back to acceptance and happiness.

8 month old with a soother in her mouth in front of the Christmas tree
Timothy’s first Christmas.

My mom is one of those people. She dropped off a Christmas tree and ornaments for us but that wasn’t all. She put extra thought into how to allow Timothy to experience his first Christmas. A musical book of Christmas songs, ornaments with bells on them, even some cinnamon scented sticks for the tree. She made it possible for Timothy to experience the Christmas tree in a completely different way. I am so grateful to have such an amazing mom to help me through this journey and remind me of the true spirit of Christmas.

Christmas song book. Elf ornament with a red, green, and white hat with a bell on it,. Green and red Christmas bells. Scented cinnamon sticks for the tree.
Thanks Mom.

Happiness is Blind

This is going to be my first real blog post and I couldn’t be more nervous. When I was thinking of starting this page there was always something that would hold me back from diving in. At first it was the thought of people reading personal details about my life (PS – Mom I would really appreciate it if you never read the marriage section) but I quickly got over that. Anyone who knows me would probably say I am an over-sharer anyway.

In the end the biggest reason it took me months to finally decide to jump in the blog pool was creating a name.

I always knew I wanted the name to incorporate the main reason I wanted to publicly share our journey. My son Timothy, who was born blind. Which you can read more about on this blog post:

https://happinessisblind.com/2019/11/18/timothys-story

What I didn’t know was how to incorporate it in a way that is positive. Finding out your child is blind comes with many feelings and I plan to address the good, the bad, and the ugly crying that came with it but the main focus of this blog and our everyday life with our family is the amazing world view you begin to have when you are not focused on how things look.

Thank-you for joining me and my family on this journey.