As I sit here anxiously awaiting Timothy’s first day of Playschool tomorrow I know deep down what I’m most anxious about.
Timothy is our last baby. The last “firsts” we will experience with a child of our own. And although there were many times I wished we were “on track” with other kids, I relished the extra time I got with Timothy needing me. I got to carry him a little bit longer and to snuggle him to sleep just those few extra times. I got to drag out the last of our firsts.
Now everything is about to change. I’ve seen it coming the past few months. The leaps and bounds forward Timothy has made. And it’s amazing, truly. But it’s scary too.
Playschool is going to open so many doors for Timothy. The help and services he will receive is what we’ve hoped for these past 2 years. But it also means that he is about to grow into a little boy, the last traces I have of my baby slowly going away.
I know that now comes the growing up, the independence, the need for me a little bit less. I know that now comes the letting go.
It is time for a new beginning. Today we get our keys for our first owned home together and we start a new chapter in a new place.
We will be saying goodbye to the home we have lived in for the past three years. The place we brought Timothy home to. The home where we went through the journey to his diagnosis and the first 2 years of life with a child that has a disability. This is the place we grieved for his future and the place we came to accept a new future for him. This house has been filled with some of the lowest moments of our marriage but it has also been filled with love, perseverance, commitment, and growth in our marriage.
As we’ve been leading up to this move I’ve been thinking about how much our life is going to change. Although we aren’t moving far from the city, as I started to set things up I realized we will have a whole new schedule and routine. There will be a shift in our everyday life. And although this change has been months in the making it will happen in a way that is all at once.
Hailey will be attending a new school in a different school board. Coming with it new bell times, new bussing, new teachers and new kids. Charlotte will be attending a dayhome once a week, the first time she won’t be babysat by my family. And Timothy will be plopped in a completely new environment where at first everything will feel like a threat to his safety.
Of course all of those changes have a flip side too. Hailey will attend school with most of the same kids all the way through grade 12 and has a chance to make life lasting friendships. Charlotte will get a chance to socialize with other kids more before kindergarten and experience more independence. And once Timothy learns his space it will be his to keep since we won’t be living on a year to year lease.
See there are two sides to the story as there often is. Something I’ve been working on learning since Timothy’s diagnosis is that positive and negative feelings can coexist. It definitley doesn’t come naturally because it is confusing to feel tinges of sadness over a happy situation. And with the move it has been hard to navigate these coexisting feelings.
Most of the time I am so excited. It’s all I can think about and all I want to do is plan out the home decor in my head. But sometimes a little fact hits me and has me in tears. Like the fact we won’t see Grandpa everyday at school pick up, or the fact Hailey is nervous about having no friends, or the realization that if James is still working away I will be very alone now that I live farther from my parents.
I find it hard to express these negative feelings because I never want to make it seem like I am unhappy with our decision or not excited to meet this BIG goal of ours. Of course I’m happy and excited but I’m nervous and maybe a bit scared too.
I need to honor those negative feelings so that when we go to pick up those keys this afternoon I can fully appreciate the positives of this new chapter.
This is a goal years in the making and we have finally reached it. Buying a house was always important to us but after Timothy’s diagnosis it became the highest priority. We wanted a place he could get comfortable in that we didn’t have to leave. We wanted to be able to make adjustments for him. And it was important for us for the girls to have a steady home growing up. We’ve moved with Hailey three times before this and didn’t want to have to keep doing that to her, especially now that she is in school. We wanted a place Charlotte could make friends and feel comfortable enough to talk and participate in her environment. I know that the community and town we chose will make all of these things possible for us. And I am excited to live somewhere different, I’ve never moved out of the city I was born in. I think that this will be a new chapter in our family unit that will help us grow closer together.
These are positives feelings I need to honor.
Sometimes in life we get to caught up in how we are supposed to feel about things that we can’t even figure out how we really feel. But life isn’t black and white. This week has been full of grey areas. I’ve switched between sad and happy tears, excitement and anxiety. And although it can be confusing and feel wrong, It’s all a part of the journey.
In the world of parenting a children with disabilities I have always considered myself fairly lucky in regards to our diagnosis. Both in the sense that our diagnosis does not affect the expected lifespan of our son and also in the fact we received a firm diagnosis before Timothy was even 1. I didn’t even realize how lucky that second one was until I started talking with parents who were still awaiting diagnosis at 2 and 3 years old.
LCA seemed like our best case scenario when we went through testing because it wasn’t life threatening. Sure, Timothy’s condition was causing some other developmental delays but that’s to be expected…right? I mean if you can’t see it is pretty scary to let go and take steps on your own, and how can you learn the words for cup or bowl or spoon or fork when they all feel similar to each other. Not to mention the absolute lack in therapies for most of Timothy’s life in the times of Covid.
I’d say I have felt pretty secure in our trajectory and what the future held since getting the results. But maybe I was too comfortable, maybe I was missing something, or there was something I just didn’t want to face. At least that’s what one of my son’s doctors thought.
So when I sat in front of a doctor in April for the first time and was told they would like to run a chromosomal array, well I wasn’t happy to say the least. I thought you don’t know Timothy, you just met him. How could this doctor sit there and question his diagnosis, it made no sense. And as I left that meeting with the words “he doesn’t look like he has a syndrome but we might as well check” ringing in my ears I started to feel a little off balance.
There was no way he didn’t have LCA. I mean we were all genetically tested. That can’t be wrong can it? It wasn’t. So after sending in our full retinal genetic report and finding out nothing came back on the chromosomal array I thought “Ha!” I won this round.
Unfortunately that was only round one. And this doctor was still not comfortable to say that his developmental delay was caused by LCA or at least not entirely. So when we spoke over the summer I was told that yes Timothy does have LCA…but (oh no) that doesn’t mean he can’t also have another condition affecting development.
Another condition? On top of LCA? I wasn’t ready for that. We got our answer a long time ago. We have accepted it (for the most part). Living with LCA is our life now. I’m not ready to go through another diagnosis.
Our next appointment to further discuss the testing and to possibly perform the test was scheduled for October. The reason we had to wait so long was because it is a BIG test and they had to apply for approval to fund it. It’s a test called Whole Exome Sequencing (WES) and it goes through about 20,000 genes, it can tell us a lot of information about Timothy’s genetic make up. So for the 3 months leading up to the appointment I went back and forth in my head about whether or not I felt another test was worth it.
Most of the time I landed on NO. I know my kid. I know him. I’ve watched him struggle and I’ve watched him learn. Yeah maybe he isn’t where we thought he would be, even with the LCA, but he’s making progress…isn’t he?
But as we got closer to the appointment I started to question myself more and more. Is he making progress? His speech has improved for sure but physically has he changed much this year?
I started to think about the disability funding we get and how they wouldn’t pay for therapies because he’s “just blind”. I started to think about the fact he will be in preschool next year and being able to access the appropriate amount of help for him. And I started to think of myself at the beginning of this journey. I started to think of the endless hours I spenttrying to get Timothy to look at me, trying to convince myself it wasn’t what they thought it was.
And so I decided to do the test. Because not doing the test was for me. Because I’m not ready to have another diagnosis thrown at us. Because I’m scared of what could come back. Because I’m comfortable with how things are.
But doing the test is for Timothy. Because if something comes back we can manage it, we can access the appropriate help, we can learn about it and what it means for his future. And then we can begin to accept it.
So here we are 2 years later almost to the day sending blood work to Finland and beginning our wait…again.
Thank you for reading and continuing to support our journey.
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.
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.
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.
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.
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.
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.
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.
I know it has been a long and tough road and yet you are only at the beginning. There has been sleepless nights, never ending days, endless google searches, and too many tears. Ever since the first thought of there being something “different” about your child, you have not been at peace. You have wondered what, why, and how. You have blamed yourself for not remembering your prenatal vitamin everyday, or for that one time you caved and ate unpasteurized cheese during your pregnancy. You have scolded yourself for not recognizing what was going on sooner, or not pushing the Doctors to look harder. And then all at once you have quickly forced yourself into acceptance and bravery. You know your husband does not understand half of the medical terms being tossed around, and your mother is beside herself with worry for your child so you have to be there to support them. Speaking of your child, how can you show them anything but bravery and acceptance? This is their life after all and they are so young and innocent. This diagnosis changes things, possibly everything. You have to keep it all together, the dishes, laundry, making meals, signing field trip forms, blood tests, specialist appointments, the list only gets longer. You make all the calls, telling family and friends the same information over and over, always answering “I’m fine” if they ask how you are handling things.
But Mama, you are not fine and that’s okay. You are allowed to feel the roller coaster of emotions this diagnosis came with. You are allowed to be angry and blame the universe if that gets you through the day. You are allowed to be afraid for every single worst case scenario that could come your way. You are allowed to laugh at things that are completely inappropriate at the time. You are allowed to eat every piece of chocolate you can get your hands on. You are allowed to ugly cry into a pillow. Your life just changed in a big way too. And tomorrow or two weeks from now you will get up and continue on with the bravery and acceptance because you are a great mom. But until then feel all the feelings, let yourself go through the healing process. It’s okay to grieve.