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