Writing a blog has always been something I have been interested in but I wasn’t sure if I had anything worth reading about so I stuck to keeping a journal. That was until this past year changed my life drastically and I felt compelled to share my story and my continuing journey publicly. I am so excited to enter the blogging world and make connections with others who feel like they can relate to my life in some way.
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The first evening after learning about Timothy’s eyes I came home and thought “why me?” now I know that sounds terrible but it’s not what you think.
I wasn’t thinking why me because I did not want to have a child with a disability, but because I didn’t know if I could be strong enough, brave enough, smart enough, organized enough, just overall good enough to handle everything we were about to have thrown at us.
I had seen parents of children with disabilities and the struggles they had. I didn’t know exactly but I saw how much it took out of them. The paperwork, the appointments, the testing, and the waiting. Watching your kid suffer, be afraid, cry, not understand what is going on, not be like other kids, and be bullied because they are not like other kids.
I got a sudden case of Imposter Syndrome wondering if I was ‘Mom’ enough to handle this. Timothy is my third child so I felt like I kind of had the hang of it all. At least age 0 to 5 but that was with typical children. I had no idea how to handle a child with special needs… and blindness? Well I knew it was a thing but I never had really been around anyone who was blind before.
All I knew about blindness was that Timothy would have to learn and read Braille. You know those little bumps on the washroom signs. So in an effort to rid myself of the Imposter Syndrome, I threw myself into learning Braille and I was pretty good at it too. I memorized the entire alphabet within days.
But Timothy was just 4 months old and having me know the alphabet in Braille was not really going to help the current situation. So I also threw myself into research, on blindness and on his preliminary diagnosis of Leber Congenital Amaurosis (LCA). I read about how we can adjust the house for him, how we can help make him more comfortable in new places, how I can teach him about things through talk and touch. I learned about LCA and read about all the different gene types (we didn’t yet have our diagnosis). I also connected with tons of families. I joined Facebook groups and followed Instagram pages. I learned through others who had blind children who were a bit older than Timothy.
And slowly the Imposter Syndrome started to fade. You know the saying knowledge is power and not only had I been gaining knowledge about blindness and LCA for months, who else was more knowledgeable about Timothy than me?
I would go to countless appointments with different doctors who all have different specialties but they seemed to ask the same questions. Nothing seemed to be going anywhere. I know Timothy and I know what he needs and what he is ready for or not. I know where we need help. So instead of going to these appointments answering the same five questions about his growth and development I now go with my list of questions and the things I think we should be doing for him.
This is when I finally started to answer the question of “Why Me?”
Because I love my children deeply and unconditionally. I will advocate for Timothy in every single situation whether it’s to a Doctor or a family member or a stranger in the mall. I will never stop researching and learning about all the things I can do to make life easier for Timothy. I will never stop educating others on Timothy’s condition. I will do absolutely anything and everything to help Timothy succeed. As I started to really think about it the better question that first night would have been “Why not me?” .
Becoming a Special Needs parent was not something I had planned and at first it was really uncomfortable for me to feel like I had anything to offer the situation but slowly I’ve discovered that I am one of the most important people on Timothy’s team. I am his Mom.
Thank you so much for taking the time to read my blog.
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”.
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…
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.
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.
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.
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.
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.
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.
Thank you for taking time to read this post and sharing this journey with my family.
Every New Year’s Eve brings on a feeling of anticipation for the future and a hope for a better year ahead. People usually spend the week leading up to the New Year thinking of all the things they can change in their lives, including but not limited to their bodies, minds, jobs, family situations, financial situations, etc. Since we entered a new decade this year it seems that the wish for change was amplified. I found a lot of the resolutions I was reading to be inspiring and for a minute I let my mind think of all the things I would like to see change for my life in the New Year but then I decided to have a different goal for 2020. So instead of my wishes for what I can change this year, I will tell you my wishes for what I can learn to fully accept this year.
This year I hope to accept my body and all the changes that came with having three children, I hope to not worry about the number on the tag of my jeans, or the scale. This year I hope to accept that relationships change over time. I hope to accept these changes as they come and try to remember my number one focus is to build and nourish healthy and caring relationships and not to hold on to ones that are no longer serving my intended family in a good way.
This year I hope to accept dirty looks, stupid questions, and inaccessibility. That one might sound weird but it is true. I hope that the dirty looks I get from strangers do not have me feeling down all afternoon, I hope that I can answer the stupid questions with compassion (at least they are trying to learn), and I hope I can acknowledge that the lack of accessibility is really just a lack of knowledge and information not a personal attack towards people with disabilities (including my son). And the most important thing I want to accept this year is Timothy having Leber Congenital Amaurosis CRB1.
Now this one I have already put quite a bit of work into before having an official diagnosis but since getting one it seems the conversations around me have changed. A lot of focus is put onto if there is a treatment (there is not) and if there will be a treatment in his lifetime (no one could answer this one). This year I hope to accept CRB1 for what it is currently (a lifelong condition). This does not mean I have given up hope for a treatment or that I will not continue to stay up to date on what is going on in the world of LCA research. What it does mean is that I am okay if Timothy remains blind for the entirety of his life. This year my goal is to really accept this condition and place more focus on Timothy and who he is growing up to be and being blind is a part of that. Timothy was born this way and how he interacts with the world around him including with me is all partly shaped by him being blind. I have people every day telling me that they hope for a cure or a treatment to “fix” Timothy, and I have come to the conclusion that he is not broken and therefore is not in need of being fixed. LCA might have taken Timothy’s vision, but it will not take away his ability to succeed, feel loved, experience joy, or anything else he desires out of life. This year I hope to feel overwhelmed by acceptance for my life and for my family how they are because I have so much to be grateful for and I do not want to waste another year worried about changing things to be “better” and missing out on all the beautiful things I already have.
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.
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.
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.
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.
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.
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.
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, 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.
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.
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).
These are the four guidelines we decided upon to help us get through the holidays:
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.
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.
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.
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.
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!