What’s in a Name?

Throwback Thursday – Life before LCA.

Naming your baby is one of the first big decisions you will make for your child.

A lot of people have names picked out for their future kids at a young age. Something from a book or a movie, someone they look up to, or just a name they heard that stuck with them.

I had several names that I liked over the years but never really one specific name that I knew I wanted to name my children. It actually took quite a while during my pregnancies to decide on their names. But I wasn’t the type to wait and see what I felt fit when the baby was born. I’m way too indecisive for that, my children would have been nameless for months.

I had thought I settled on a boy name I really liked before we found out that Charlotte was a girl but then it became the most popular boy name around. And when I found out I was having a boy for my third I just couldn’t imagine having my son be the 7th Noah in his classroom every year haha. So we were back to square one. Except this time I did have a specific name I wanted to include, two actually.

Photo from my maternity pictures laying on my back with a baby hat that says "Timothy" laying on my pregnant belly.
Timothy Edward.

Something I haven’t talked about much on here before is the fact that I have lost two of my brothers. Eddie in 2010 and Tim in 2017. So finding out we were having the first grandson in the family was emotional for many reasons, and it was important to me to honor the memory of my brothers in someway.

James and I spent months going over hundreds and hundreds of baby boy names. All while trying to accommodate two middle names. Mixing and matching names to figure out what order flowed the best and what went with our last name (not a lot does – trust me) but we could never agree on one that felt right.

Then one day the thought came to me to just skip an original first name altogether and use one of my brothers’ names as his first name and one as his middle name. It was an emotional choice. Something I felt the pull to do as the loss of my brothers has shaped my life in so many ways. I also really wanted to keep the names together because it didn’t feel right to have one without the other. It was something I tried out in my head for a few weeks and kept to myself until I was sure I wanted to bring it up as an idea. I mean was James really going to say no to something that sentimental and meaningful? Of course not (there is also some sort of batman connection to the name he liked haha) but I was still nervous because I wanted him to feel like that was the right name for our son.

Once I felt like it was the only name I could truly think of using I decided to bring it up and luckily James agreed that it felt like the perfect fit. We also decided out of respect we would ask my immediate family how they felt about it because we wanted it to be a nice way to remember my brothers and not a constant painful reminder of their loss. Everyone was on board and it made welcoming the first grandson even more special and emotional.

Now everyday I get to remember two people I love deeply through my little boy who is the most special person I’ve ever met.

It was the first big decision we were making for our baby and it was made out of immense love. I can’t wait until the day I can tell him all about the two uncles he got his name from.

Photo collage. Left photo is of my brother Eddie. Middle photo is of my son Timothy Edward. Right photo is of my brother Tim.
Eddie – Timothy Edward – Tim

We love and miss you Tim & Ed.

Our Blended Family

Throwback Thursday – Life before LCA.

As a young single mother the idea of having to become a blended family was something that scared me.

Will anyone want to date someone who is a mom? Will they accept my child? What will it look like to create a family with someone who isn’t my daughter’s biological parent?

It’s not like being a blended family is something out of the norm these days, almost every person I know comes from a blended family. I even grew up in a blended family technically but since the word “step” was never used in our house it didn’t really feel like it.

I knew the type of relationship we had with my daughter’s biological father would also greatly determine the way our blended family worked. At first I was hoping to have a more modern family where we could all get along and support our daughter together. But unfortunately what I feared would happen, did, and my daughter’s biological father decided to not be a participant in her life very quickly after we were no longer together.

When James and I started dating, my daughter, Hailey, was always a big part of our discussions about our relationship and any of our plans for a future together. Unlike some people I had talked with, James never made me feel like Hailey was some unwanted baggage that came along with me. See he also grew up in a blended family and was raised by his mom and “step-dad” (just dad to him though) which gave him a unique understanding and care about how he handled a relationship with a single mom. He made me feel like getting to know Hailey was a benefit to dating me instead of a burden.

Photo of James holding Hailey on his shoulders they are both smiling at the camera.
James and Hailey.

I remember very clearly the day that Hailey started to call James, “dad”, it was after he attended the Father’s Day celebration at her daycare. He left work early to attend so that she didn’t have to be the only one without a dad to show up. When they got back home after, she kept saying “daddy” over and over again, and it has stuck ever since.

We were engaged and I was expecting our first child together when this took place. We had discussed it before because she would occasionally refer to him as “dad” or “daddy” but it was never consistent. Our biggest worry was that we did not want her to feel like she had to refer to him as that or that she couldn’t refer to him as that if she wanted to. We wanted it to be her choice.

Unfortunately this choice was met with some criticism from people at the time who questioned if it was a good idea for her to be getting too attached to another “dad” but we tried to not let them bother us.

One of the hardest parts of blending a family for me so far has honestly been the opinions from others. Everyone seems to have one and they always feel the need to share them. Why? I’m not sure. I think what works for one family to the next is always going to be individual and without being the people in the actual situation it is unfair to judge the decisions being made.

And so ignoring the noise from others our next big decision came into play a few months later when I experienced a scary event during my pregnancy. I ended up collapsing while I was out on my own and it seemed as if I was having a stroke (I will talk about this more in Charlotte’s pregnancy story). All I really remember from being in the ambulance was thinking about what happens to Hailey if I don’t make it.

Photo from behind of James helping Hailey paint her wall purple in our first place together.
James helping Hailey paint her room.

Well spoiler alert… I made it. But this moment opened my eyes to a fear so big that I couldn’t ignore it. It was unimaginable to me that if something were to ever happen to me, Hailey would be taken from the life she knows, to be forced into a life with someone who left her behind (and was also abusive but that’s a story for another time).

This is when we decided we wanted to make James being “dad” official and we began to pursue a step-parent adoption.

It was A LOT of paperwork. It took 3 months of work leading up to our wedding, and another 3 months of work after our wedding before we had it all submitted to the court. But it was all worth it on August 15 2018 when it became official and Hailey gained the same last name as her family.

A piece of paper saying that James is Hailey’s dad isn’t what we needed to feel like a complete family but it is what we needed to feel like Hailey was safe and protected in any circumstance.  

We know that we have only begun this journey and that there are many things that will come up and many obstacles to be worked through as Hailey gets older as being a blended family never ends but for now we are happy to be in the place we are as a family.

Photo of James and Hailey sitting together smiling taken on the day we got the official adoption letter.
First photo as father and daughter after the adoption was official!

Thank you for reading about our journey!

Acting Our Age

The Balance of being a Young Family.

I’ve been asked a few times how old we are and I usually don’t address it directly because it makes me uncomfortable. It really shouldn’t make me uncomfortable because it really shouldn’t make a difference. But in some ways I guess it does make a difference, hence my post today.

 I had Hailey when I was 19 years old so I am quite used to the judgement from others about how young I am to be living the life that I live. James and I were married at 21 and 23 years old. We had all three kids and even knew about Timothy’s diagnosis before either of us was 25.

The responsibility of raising a family is a great one, a family with three kids even greater, a family with three kids where one has a disability…phew. As you can imagine there is a lot on our plate. Heck it would be a lot on our plate at 35, but admittedly these situations did make us grow up a lot faster than some (let’s be honest…most) of our peers.

Photo at our wedding of James holding Charlotte standing beside me while Hailey stands in front of us.
Our Wedding.

We really don’t mind having to be more grown up. We both wanted and chose this life. Marriage was always in the cards and something we wanted for ourselves. Kids were always a dream of both of ours separately before we were together.

See we didn’t really fit in with others our age who wanted to party and explore their options…if you know what I mean…

Instead we mostly fit in with a more traditional lifestyle.

On our one year wedding anniversary we went to a comedy show and I was heavily pregnant with Timothy (he was born exactly a week after our anniversary). We sat near the front because that’s what was open, and as you can guess we were singled out.  I think he spent more than half of the show teasing us after he nearly died when we told him this was our third kid.

These types of instances have happened a lot over the years. I remember when I was pregnant with Timothy all of the nurses and blood lab technicians seemed so much nicer than before. I later realized they all felt I was now an appropriate age to be having a baby, and I was married, so I was worthy of congratulations. That nice demeanor often disappeared once they asked if he was my first.

“No, he’s actually my third”

“Oh…you sure have your hands full”

Anyone with more than two kids has probably heard that one a million times.

But as much as we love our grown up life, we can’t ignore the fact that our age does occasionally come into play. And what we have learned is that part of the fun in getting married when we were younger is that we do not only get to grow old together but we also get to grow up together.

We have found that having a balance between being Mom and Dad, and being Melissa and James, has made a world of difference in our relationship.

Of course we are Mom and Dad all of the time. But now that our kids are old enough to spend the night at Grandma and Grandpa’s we make a lot more time to be just Melissa and James.

What this usually looks like for us is a date night where the kids stay over at their grandparents when James is on his off time.  

Taking this night has been such a recharge in our relationship. It gives us the opportunity to connect without interruptions for a snack every two minutes. It gives us the opportunity to have fun as just a couple. And it gives us a moment in time where some of the pressure is off (because having three kids and dealing with a diagnosis is a lot of pressure).

Photo of James smiling sitting at a table with two sample flights of beer in front of him from our trip.
Radium Brewery.

This last rotation we decided to turn that date night into a little more and spent a couple of nights away. We went up to the mountains and went zip lining. We wandered the small town going to breweries and pubs and enjoying each other’s company. We got drunk and went to a karaoke bar.  We even ended the trip with some spontaneous mountain tattoos.

And then we went home, and were back to being Mom and Dad.

There was a point in our relationship where we did not do these types of things. Where date nights were few and far between. And when they’d happen it was rushed so we could get back to the kids.

I always spent a lot of time worrying about what others would think of us for taking time away from our children.

I didn’t want to be seen as the young, immature, irresponsible parents dumping their kids with the grandparents to go have fun. But I realized it doesn’t matter what people think because that is not what we are.

We are the young parents who spend 99% of our time doing whatever is needed for the family.

We are the parents who are constantly working, scheduling appointments, learning new techniques, struggling through delays and service restrictions. We are the parents who are trying to make a comfortable living for our family while still trying to make as many memories as we can together.  We are the parents who put everything we have into our kids.

So I’ve decided its okay that for 1% of the time we want to act our age.

Family photo from July 2020.
Our Family.

As always thank you for reading and keeping up with our family’s journey.

Falling Apart

The Season that tried to break me.

Fall has always felt like a magical season to me.

I don’t really know why. Something about the colors and the perfect temperatures. Something comforting about Thanksgiving dinner and crinkly leaves.

2020 needed Fall. This year has been so difficult already, it needed a touch of magic.

I was anticipating Fall all summer, I felt like making it into that season would just help this year be better.

But then life happened.

Fall showed up. But the magic did not.

My marriage was tested and boy did I ever feel like I was failing that test.

We started marriage counselling. Which actually wasn’t as scary as people make it sound. (So don’t be afraid to try it!)

But I struggled this season. I’m still struggling. I’m a young mother of three. I have a child with a disability. It often feels like outsiders are just waiting for the day when I fall apart. The pressure to have it all together feels heavy and at times unattainable.

And just as I was trying to catch my breath, my husband was out of a job.

Out of everything going on in our lives at the moment, his job was the one constant.

Losing that stability in an instant shook me. The weeks that followed were filled with stress, uncertainty, tension, and fear.

We are lucky enough to be okay financially, because we were saving to buy our first home. A dream that was a mere weeks away was suddenly put on an indefinite hold in a matter of minutes.

Everything felt hard.

The opportunities for work were there but nothing that kept us where we wanted to be for our future. Other than one.

A camp job where my husband would live away from us for 2 weeks at a time.

This type of job is not something I ever wanted for my family. I’m the kind of person who values eating dinner together as a family at night, hugging and kissing our kids goodnight, going to bed together.

I felt like everything I thought I knew about the future had disappeared in a matter of 6 weeks.

How did I get from playing at the playground with our kids in our would be future neighborhood to living alone 3 weeks of the month? Nothing felt right anymore.

Everything was falling apart. And as much as I tried to keep up the appearance of normal, there were cracks in the mask. I didn’t have much to say, I wasn’t keeping up with my appointments, I would make plans for things that I never ended up finishing.

So that is why I am here sharing all of this now. I don’t want to wear a mask anymore.

I’m just a person. Trying to be a wife. Trying to be a mom. Trying to navigate having a child with a disability. Trying to navigate the medical system.

And most importantly…

Trying to believe that next year Fall will have it’s magic back again.

Photo of three trees with orange and yellow fall leaves on them.
Fall Trees

Thank you for reading and allowing me to share our story.

I Never Dreamed I Would Be This Mom.

Thoughts from my First Mother’s Day as a special needs parent.

I never dreamed I would be this mom. You know, the mom with a special needs child. It’s a shocking thing to say out loud but it’s true. No one dreams to be a special needs parent, it just happens.

Before I became a special needs mom…

I may have dreamed I would be the mom chasing my toddler around the house. I never dreamed I would be the mom begging my toddler to attempt to crawl.

I may have dreamed that I would be the soccer mom, or the dance mom. Running between championship games and year end recitals. I never dreamed I would be the mom with 20 doctors and specialists number’s in her cell phone. Running between PT and OT and SLP appointments. Heck if I am being honest I never dreamed I would be the mom who knew what all those letters stood for.

I may have dreamed I would be the mom who surprised her kid with a car on their 16th birthday. I never dreamed I would be the mom whose child would never have the ability to drive.

Now that I am a special needs mom…

I never dreamed I would be the mom begging my toddler to attempt to crawl but then I wouldn’t be the mom who got to clap and cheer for her toddler who found the strength to push into the crawling position.

I never dreamed I would be the mom who has 20 doctors and specialists number’s in her cell phone but then I wouldn’t be the mom who got to advocate for and support her child’s health and well being every single day.

I never dreamed I would be the mom whose child would never have the ability to drive but then I wouldn’t be the mom who got to have those extra car rides and conversations with her child.

So yes I never dreamed I would be this mom but I also never dreamed that I could have so much strength, or that I could give so much of myself, or that I could love someone as much as I do now because I am this mom. The mom with the special needs child I never dreamed of but now couldn’t imagine life without.

Family photo taken the day we brought Timothy home from the hospital.
My Crew.

Happy Mother’s Day!

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

The Mental Load of Mothers

The kind of tired that sleep can’t fix.

Being a mom is tiring; there is no question about that. At any age and stage during infancy to adulthood there is always a reason that being a mom is exhausting: as a newborn it’s the constant waking to feed, as a toddler it’s the constant energy, as a child it’s the constant activities. Past that I can’t really say first hand but I have some ideas.  But being a mother comes with more than just lack of sleep and energy, it comes with the type of tired that sleep alone can’t fix.

Hailey, Charlotte, and Timothy at 6 weeks. Hailey and Charlotte are smiling. Timothy is crying.
It’s tough to be a baby.

The main reason that being a mother is so exhausting is because of something called the mental load. I like to think of the mental load like a giant backpack filled with miscellaneous items that are inside my brain. It is a weight that mothers carry every single day, and being a mother to a special needs child adds a significantly longer list of items to the backpack.

This backpack is filled with big and little things, but the weight of each adds up to be quite heavy for one person to carry alone. Especially when just as quickly as something gets taken out of the backpack six more items are placed inside it.

This mental load aspect of parenting is something that usually falls onto the mother (not always) and therefore can cause some strain in the parenting relationship because it is a lot to ask of one person. Men and women are just different and as much as everyone knows that it can be really frustrating to deal with those differences in daily life.

This morning my husband got up and decided he had enough time to make himself some eggs and toast for breakfast before work. So he did that, and he went to work.

This morning I came downstairs to get Hailey ready for school and all of us out the door in time for the school bus. But I saw there was no bread left to make her a sandwich and so I had to go get some from the deep freeze in the garage. On my way over there I noticed James’ boots tracked mud all over the front entry way so when I got back inside I swept. Then when I went to throw out the mud I noticed the garbage never made it out last night and so I changed that. And then I cursed under my breath and got all the kids ready and out the door.

Charlotte laying on the ground throwing a tantrum beside a teddy bear.
Toddler Tantrums.

As I sat at the bus stop waiting I sent off a quick snippy text to my husband “Thanks for leaving me no bread to make Hailey’s lunch”. I was furious. Yes I know it’s just bread and at least we did have some in the freezer but I’m tired.

I am tired of being the only one to remember that: Hailey’s lunch needs made, the agenda needs signed, the pediatrician needs called, the physiotherapy needs scheduled, Timothy’s on his last pair of clean pants, Charlotte only has 2 diapers left ,next week’s appointment conflicts with school pick up, did we use the last of the frozen vegetables last night? I better pick some up.

The to-do list that continues for eternity in my head is overwhelming. As I think myself into a spiral I heard my phone. “Sorry babe I didn’t think of it.” That was my husband’s reply and as much as I was still seething, I also wanted to laugh. Unfortunately that was just the truth of the situation, he didn’t think of it. There was no master plan to make my morning more difficult although it felt like it at the time.

Remember how I said the mental load is like a backpack full of miscellaneous items in your brain? Well continuing with that analogy… think of when you go away as a family, even for a night. What does your husband pack? Probably his own bag which consists of a new shirt, underwear, deodorant, and if you’re lucky a toothbrush. What do you pack? What do you pack for the kids? Chances are a lot more than what he packed. As women we tend to want to be prepared for anything, and are generally more organized then men. So if you pack more in your physical backpack than your husband, what makes you think it would work any different mentally?

James sitting in the car with Timothy at 6 months sitting in the passenger seat. We are parked.
Road trips.

Now I’m not saying this means that it should all be on you and that he is off the hook. Not at all. But I think the first step of sharing that mental load is for you both to understand how the other sees it and why. And then to try and find a common ground and compromise on what you each can realistically take care of.

For my husband, he doesn’t have a great memory so if I want him to take out the garbage for me, or switch over the dishes while I’m out late at girl guides with the kids, I just need to ask. And for myself even though I know realistically I need to handle all the scheduling of appointments, I just need a listening ear from him to vent to about my stresses with it.

There will always be differences between my husband and I in how we deal with things and that is just a part of joining your life with another person. The way we communicate about it and work together is the most important aspect.

I don’t ever expect to not carry the majority of the mental load simply because of who I am as a person (I like to be organized and I’m a worrier). What I do expect is that my husband is there to hold the backpack for me for awhile when I just can’t carry it anymore or that he is there to help catch it when it starts to slip off.

James and Melissa sitting together smiling
Partners.

Thank you for patiently waiting for a new post, the backpack has been a little extra heavy these days <3.

Our New “Normal”

This week is normal; in fact it is so normal that it actually feels abnormal. We don’t  have any doctor appointments, therapies, or specialists. I’m not expecting any phone calls for scheduling or testing or updates. It is just a plain old week. And as much as I should enjoy it, it feels wrong, like I must be forgetting something.

Timothy sitting on the couch smiling. He is wearing a blue sleeper with a polar bear on it.
Smiley Timothy.

Ever since we started this journey with Timothy’s Leber Congenital Amaurosis (LCA) I have gotten accustomed to the busyness of it. There seems to always be something going on whether that be an appointment, or two, a therapy, a new doctor, a follow up phone call. I don’t really remember the last week I had without at least one of the above.

Although this is an unusually quiet week, I can just look at my calendar for the next 6 weeks and realize that this is the calm before the storm of all of the above and then some.

Yet something about the quietness of this week has my anxiety going wild. After shrugging it off as just anticipation for the crazy month and a half that is creeping up on me, I realized it actually isn’t that at all. Instead it is the fact that all the busyness is what feels “normal” to me now.

Having a child with special needs comes with a lot of moving pieces and I have been organizing those pieces into our lives for about 7 months now. In a way it feels like it has become our life. So when we have a chance to sit back and just have a quiet week at home it just doesn’t feel right.

This is a part of special needs parenting that I really struggle with; the right to feel normal in abnormal circumstances.

Hailey holding Charlotte to go down a slide. They are both happy.
Playtime with our girls.

I think it confuses other people who haven’t been in this situation to think of weekly appointments and a lifelong disability as being “normal” but for us special needs families we need to regain a sense of normality in our life after the initial shock of a disability diagnosis.

 I get more comfortable with Timothy’s diagnosis every day.  The little details of his nystagmus (jumping eyes) or him not making eye contact with me have become less obvious and I can go for hours in a day without even thinking about him being blind. He is just my Timothy, he interacts with me how he always has, and he interacts with the world as he always has. And to us that is normal.  

I get used to running around to all the appointments and in a way I enjoy it. Checking in with Doctors and starting new therapies makes me feel like I am doing something to help Timothy thrive.

Yes there are still days where I am completely overwhelmed by my schedule and how I will make it all work, or completely heartbroken over the dirty look Timothy got at Wal-Mart because he was going cross-eyed (which is actually called Strabismus  by the way).

A big part of acceptance and moving forward is finding our new “normal” and being able to enjoy our family fully just the way it is and that is what we are learning to do every day.

So I hope for other special needs families out there, you can also realize that we all deserve to feel normal regardless of if your “normal” is different from others.

Timothy is sitting on the couch. He is wearing a t shirt, a blue batman baseball cap, and black sunglasses. He is smiling.
Our cool dude.

Thank you so much for reading about our journey.

For Better or For Worse

Marriage and a special needs diagnosis.

James and I are basically still newlyweds… okay maybe not quite but we are pretty new to this. Timothy was born exactly 1 week after our first wedding anniversary.  So at this point we are almost two years into marriage.

When you first get married there are these ideals you have and plans for how you think your future might play out. But you know what they say “life is what happens when you’re busy making other plans”.

Melissa and James at their wedding kissing at the alter.
I do.

I thought we were probably more prepared than most for the curveballs of life based on what we went through before getting married (losing a sibling, antenatal depression, high risk pregnancy,  blended family, etc). We had a pretty colorful year of being engaged.  But yet I still found myself naively creating these plans and ideals for our life together thinking after we said “I do” all those other problems of life would just cease to exist.  

We had agreed that three children was probably going to be it for us baby wise (we already had two when we got married) so after Timothy was born everything seemed set.

I remember sitting in the NICU with Timothy thinking I was one of the lucky ones. I got pregnant quickly into trying and had two other healthy kids at home. I was blessed with three healthy beautiful kids. I also remember a feeling of worry wash over me in that moment.

In a way I felt like having three healthy kids was too good to be true. Life just doesn’t work out that way. I remember when all of this started with Timothy thinking “Yup too good to be true”. After a lot of grieving and processing with Timothy’s diagnosis I can now say I still have three healthy beautiful kids, one is just showing me the world in a completely different way.  But back to the beginning of our journey…

Hailey, Charlotte, and Timothy. Hailey is holding brand new Timothy. Charlotte is sitting beside them.
Meeting their new brother.

The start of all of Timothy’s troubles (read Timothy’s Story) came at a time I was in the thick of postpartum depression and anxiety. Now you might be thinking what does any of this have to do with marriage and I can promise you it has a lot to do with it.

James and I handle stress completely differently. James also doesn’t have anxiety or really understand it (he is trying though!).

So when I came home from the ophthalmologist and said he thinks Timothy has Leber Congenital Amaurosis (see Timothy and CRB1) and he is blind, James said “Well that sucks but he will be okay”. Now at that moment I can tell you I was anything but okay and I wasn’t sure how it would just “be okay”.  

Throughout this journey and all the appointments and tests James has pretty much remained the same, he does not stress about them because it doesn’t change anything. But for myself I can feel my anxiety creep up weeks before the appointments and I do stress about how they will go, how Timothy will handle the appointment, will I remember to ask all my questions. The stress I have for these appointments is endless. Not to mention the massive wait times to see specialists or get test results, weeks and sometimes months of waiting doesn’t help my anxiety.  

James and Melissa (holding Timothy) smiling.
Road trips

Even though I can recognize that we have these differences it has definitely caused some conflict in our marriage. I remember a couple weeks after the initial “diagnosis” sitting on the couch crying basically begging James to be sad with me. I wanted him to cry with me that Timothy won’t see a flower or a sunset or a waterfall. He wanted me to think of how he will smell the flowers, feel the warm sun and the mist from the waterfall. We just were not on the same page.

It made me mad. Mad that he wasn’t sad about it, accusations of not even caring about Timothy’s condition were definitely thrown out (Sorry James).  And also mad that he was handling it, he was okay, he accepted it and could look at the bright side. I was struggling with that.

I also made him mad. If he were to name the top thing he dislikes about me I can guarantee you it will be how I hold onto things because I do. He wanted me to think of the positives and move forward. And I wanted that too I just didn’t know how.

Well eventually (not too long after) I moved forward and started placing more focus on the good and less focus on the things Timothy wouldn’t experience. And eventually James broke down and was sad about it for awhile. Life is funny that way.

We learned a lot about each other in these past 10 months since having Timothy, and even more since getting his diagnosis. We have really had to work on our communication and understanding (which is not an easy job).  Timothy’s diagnosis was hard and now being parents of a special needs child is even harder.

 I titled this post for better or for worse because it is usually said in wedding vows. But I think it’s hard to understand the meaning of these vows until you are married.  We have definitely felt some “for worse” moments these past 10 months. And we also feel like we have learned a lot about the effort marriage requires and grown stronger together because of fighting through those moments.

Melissa and James at their wedding walking up the aisle after getting married holding hands.
In this together.

So for any new special needs parents (or ones who are struggling) I hope that you can find a way through the “for worse” moments because there will definitely be “for better” moments too.

The Results are in: Timothy and CRB1

If you have not had a chance to read Timothy’s Story yet I have linked it here so you can catch up to where we left off on diagnosing his condition.

Timothy at 4 months old laying wrapped in a hospital blanket sleeping with an IV in.
Getting a preliminary Diagnosis.

Back in August we saw an ophthalmologist at the Alberta Children’s Hospital in Calgary where we live. Within a few seconds of doing the dilated eye exam he told us that Timothy had a problem with his retina and would be required to see a specialist out of Edmonton (about 3 hours away). He wrote down the words Leber Congenital Amaurosis on a piece of paper and told me this is likely what is affecting Timothy but we will need to undergo further testing to find out.

I started doing research the second I stepped out of his office and felt like there was not one thing about Leber Congenital Amaurosis or LCA I had not already read about (or so I thought). The only thing I needed to know was if my son truly had it. We waited three months for our appointment and it was a long hard day as my husband and I decided we would just drive down for the appointment and then come back home that night (6 hours of driving total).

When we first arrived Timothy had to go for a test called an Electroretinogram or an ERG. For this test he had electrodes placed underneath each eye and then a small camera like device was placed over his eyes and flashed different lights into them with both the lights on and then in the dark. The ERG reads the response of the retina to the light signals in both the light and dark settings. This test is used to help confirm a diagnosis of LCA if the response from the retina comes back severely abnormal or almost nonexistent. After receiving that test we got to speak with the specialist. He told us that the ERG showed little to no response from Timothy’s retina in both the light and the dark, he also examined Timothy and agreed he has little or no useable vision (especially central vision).  Although he said it is clear Timothy does not focus or react to visual stimulation, he also said that we won’t know exactly what he can or cannot see until Timothy is able to express that himself.  With these findings he said that we are looking at the diagnosis of LCA and the next step would be genetic testing to confirm 100% and tell us the gene type. We were luckily able to complete the blood work before we even left the hospital and began our 4 to 6 week wait on results.

Timothy at 6 months old. He has blonde hair and blue eyes. He is laying naked in a bassinet with his hands together holding his soother.
Sweet Timothy.

As soon as 4 weeks had hit I was anxious to hear back, I was confident that they would find something but I still had that nagging feeling  of what if they cannot figure out what is going on with my baby.  At 4.5 weeks I caved and called them to check in but there was nothing yet. As we got closer to Christmas I knew that if I didn’t hear back by the 6 week mark I likely would not have a result until the New Year. So because I am one of those moms I called again a couple times and on the 6 week mark exactly I finally got the call back. First she told me it confirmed the diagnosis of LCA and then she said the gene is called CRB1.

CRB1…okay. I recognized the name from a few families I had started following on social media.  The genetic counsellor went into details on how it is recessive and what that means in terms of future pregnancies with my husband (25% chance each child) and the chances of my children being carriers. She told me how this gene is only linked to vision problems and nowhere else in the body would be affected (thankfully). She told me they would have James and I complete genetic testing as well to show the whole picture of how the “non working copies” of the gene were passed down to Timothy. She wished me a Merry Christmas and that was it. CRB1 was now the final diagnosis.

This whole time we were awaiting the results I had promised myself I would not get my hopes up for a specific gene.  There is only one that has an FDA approved treatment in the USA and then only a couple more undergoing clinical trials. See after we got this diagnosis I had emerged myself in a community of parents going through LCA diagnosis’ and I was seeing some really awe inspiring kids regaining their vision from the one treatment. For me, wanting Timothy to receive the treatment had nothing to do with making life easier or simpler but had everything to do with those waves of grief that come with the loss of his vision. Even though I had told myself not to do it I let my mind wander into the thoughts of Timothy seeing me smile at him for the first time, or seeing the snowfall outside, or maybe a waterfall, a sunset, a flower. Yeah I let myself fall too far into those what ifs. So when I heard her say CRB1 the first thought I had was not very positive.

Fortunately we have been working through this diagnosis of LCA for months and I was quickly able to bounce back into my “how can I best help Timothy succeed” mode.  Within the day I was in touch with several great families whose children also have LCA CRB1 and they were so comforting and encouraging. Then I was able to connect with Kristin Smedley who not only has two sons with LCA CRB1 but has also started the curing retinal blindness foundation for CRB1, wrote a book called Thriving Blind, and has a TED talk about her story which really resonated with me.  Connecting with these amazing families who have all been where I am now has meant more to me than I can put into words.

Writing this blog and sharing our story and continuing to share our journey has been so therapeutic for me. I have made so many connections and not only with other LCA parents but parents whose children are blind or visually impaired from other conditions. I have also gained so much support from family, friends, and even complete strangers.  I hope that through this blog one day I can help a family who is just starting their journey into LCA and that I can be an advocate for not only my son but the blind and visually impaired community. 

Timothy a blonde haired blue eyed 8 month old. He is smiling. His blue shirt says best brother in the world.
My Happy Boy.

Thank you so much for everyone who takes the time to read my posts. I can’t wait to continue on this journey together to show the world that Happiness is Blind.