Why Me?

Finding my place as a Special Needs Parent.

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.

Melissa in the hospital NICU right after Timothy was born. She is wearing a hospital gown. Timothy is in an oxygen mask cuddled to her chest.
Brand new baby.

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?

Timothy laying on his black and white playmat. He is chewing on a fabric book and has a musical toy dog beside him. He is 78 months old.
Some of Timothy’s Sensory toys.

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.

Melissa is sitting on the couch cuddling 10 month old Timothy.
Mama and Timothy cuddles.

Thank you so much for taking the time to read my blog.

Speaking Out of Turn

Comments & Compassion

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.

James back is to the camera as he is walking forward. Timothy is on his shoulder, eye directed upwards to the ceiling which was full of lights.
Chilling with Dad.

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.

Melissa holding baby Timothy. Melissa is smiling towards the camera. Timothy has one eye looking forward and the other turned inward.
For every forward “looking” photo there are 10 of these.

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.

Timothy laying in his bassinet with a blanket and sheep stuffy. Timothy is rubbing his right eye.
Franceschetti’s Oculo-digital sign.

Thank you for taking time to read this post and sharing this journey with my family.

The Year of Acceptance

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.

Timothy laying on the couch with his soother holding a stuffed kangaroo
Timothy and his Kangaroo

Wishing everyone a Happy and Peaceful 2020.

The Results are in: Timothy and CRB1

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

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

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

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

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

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

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

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

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

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

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

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

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

Dear Hailey

A letter to my first baby.

My Hailey,

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.

Hailey at 3 years old. She has brown hair and is wearing an Ariel themed bathing suit. She is smiling standing in front of a waterfall.
My adventurer.

 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.

Melissa a 25 year old with long blonde hair and brown eyes with her daughter Hailey a 5 years old with brown hair and brown eyes.
My Hailey.

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 with her brown hair down, wearing glasses and a purple shirt. She is smiling beside her brother Timothy. He has blonde hair and is wearing a Canada Day onesie.
Best Big Sister!

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.

6 year old Hailey with her brown hair in a pony tail, wearing glasses, and smiling.
This is 6.

Love, Mommy

Home for the Holidays

Boundaries and Learning to say “No” at Christmas

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.

Brown haired 6 year old girl in a pony tail and glasses smiling in front of the Christmas tree.
‘Tis the season.

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).

Curly brown haired two year old girl placing a green Christmas ornament on the Christmas tree.
Christmas Tree Decorating

These are the four guidelines we decided upon to help us get through the holidays:

  1. 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.
  2. 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.
  3. 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.
  4. 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.

Lit up Christmas tree with a silhouette of a dad holding his infant baby boy in front.
Timothy’s First Christmas.

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!

A letter to the mom who’s child just received a diagnosis:

It’s okay to grieve.

Dear Mama,

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.

Sincerely,

A mama who’s been there.