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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This past week the whole world turned upside down.
In a matter of a few days my jam packed March/April schedule was completely cleared and I now had to home school Hailey for the rest of her grade 1 year. Though I know I should be happy to have cleared up my schedule I’m instead struggling with it because as I had said in a previous post these appointments are my new normal.
Personally these dramatic changes made my anxiety scream. I felt my mental load getting heavier. Now I have the responsibility to keep my daughter on track with school from home, and all of Timothy’s therapies are on hold so it is up to me to make sure he doesn’t fall too far behind on development. On top of that is my normal everyday stuff like laundry, dishes, dinner, etc.
Oh yeah and I need to find ways to entertain all three children without being able to go anywhere…
One of the hardest parts for me was realizing we had to cancel Timothy’s first birthday party. This was hard for me on several levels. Firstly, both of the girls got big fun first birthday parties but with Timothy we almost didn’t plan one because sometimes crowds are too overwhelming for him, but after talking with other special needs parents we decided to have one because he is just as special and worthy of celebrating as the girls were. Secondly, we aren’t planning to have any more children and in a sense this party was my goodbye to the baby years. I put a lot of thought into making his party special for him and having to cancel it was a little heartbreaking.
Aside from my disappointment with the party, being a stay at home mom for the past year I have already felt quite isolated as most of my outings are to appointments or have to do with the kids. Now that I have no outings or appointments and to have to stay home entirely is pretty tough. We are lucky that my husband is still working because at least we don’t have financial stress added and he actually has more hours now, but at the same time it can be quite lonely not being around other adults all day.
These are crazy times in the world and it looks like the safety measures in place will be sticking around for at least a couple months.
Luckily I am no stranger to my life changing in a matter of days so I know that I can and will adapt to the situation. Now that the first week has passed and I’ve had some time to process these changes I am going to start focusing on what I can do to feel okay while the whole world is in panic mode. I thought maybe I would share some of what I am doing on here in hopes it can help someone else get through this hard season.
I have found it quite important and essential during all of this to make sure I am taking a break from reading news updates online or even thinking about everything going on. There is a balance between being informed and needlessly obsessing over the news. I limit myself to one or two updates a day. I usually only watch our provincial update but sometimes I will watch the Canadian one as well. As far as the kids go I am keeping them in routine with normal wake up times, nap times, and bedtimes but outside of that we have no set schedule. Hailey is only in grade one so we don’t stress about not doing school work every day and besides there is lots of learning that can take place without a classroom. Our main focus is enjoying the extra sister time the little ones get and keeping things positive. Losing school and all your friends is pretty tough for kids. Hailey came to me this week crying that she missed her before school hot chocolates with Grandpa. She is only six years old and all this sudden change is hard and confusing for her. So like I said we focus on keeping it positive; we get extra time together to learn, to play, to watch movies, to bake, this is a special period of time that most don’t get with their school aged children. For myself I am doing my best to stay connected with friends and family through texting and other virtual means as well as take some self care time in the evening when my husband is home.
These are just some of the things I have started doing to get through this crazy time and I am not perfect at them; I still get negative, I get frustrated with the kids, I get mad at the situation, and I get upset. The world changed so quickly and we are only human so all kinds of emotions are bound to happen. The most important thing is that we will get through this.
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.
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.