Timothy’s Story

When we found out we were expecting our third and likely final baby I had a lot of feelings. The first feeling was surprise, we had only started trying and I had not expected it to happen that fast. Then there was a tinge of sadness about this being my last time experiencing pregnancy, newborn snuggles, and all of the firsts (I plan to write a deeper post on those feelings later). And of course there was the feeling of JOY because we were about to welcome another little life to our family!

Having had two girls before and collectively having SIX nieces we were super anxious to find out if we would be the ones to add the first boy. After much discussion we had decided we weren’t going to find out the gender and keep it a surprise. Although knowing myself I am not sure why I ever thought I could do that, how could I plan everything without knowing the gender? So I decided to find out the gender on my own at a private ultrasound. As soon as I found out I was expecting a boy I couldn’t contain my shock and called my sister instantly. There was a couple hours that afternoon I toyed with the idea of not telling my husband and letting it be a surprise for him but I thought yeah right and told him as soon as he was home. I think it took a couple days for him to believe me since he had no idea I was even getting the ultrasound. Soon enough we were planning the batman theme room.

The rest of my pregnancy went fairly smooth, especially in comparison to my high risk pregnancy with Charlotte. That is until 33 weeks and 6 days when I started having really painful contractions and ended up in preterm labor. But luckily we were able to receive some steroid shots for his lungs and a medication to help stop the contractions. We made it another week and a half longer before he couldn’t wait any longer to make his grand entrance at 35 weeks and 3 days.

Sleeping newborn baby wrapped in a blanket wearing a blue and white hat that says "Timothy".
Brand New

Timothy Edward was born March 31 2019 at 2:43am. He weighed a whopping 6 lbs 10 oz even as a 35 weeker. We chose his names after my brothers Tim and Ed who have passed away.

Ever since day one Timothy was such a special presence in our lives and the perfect puzzle piece to complete our family. He instantly gained the love affection of his two big sisters and everyone else who met him.

Life for our family was hectic with three kids and two under 2 but we were managing and loving all the memories we were making.

When Timothy was about 6 weeks old we were at my parents’ house for dinner and my mom mentioned to me that the way he was moving his eyes seemed off. I brushed it off as a weird baby thing but it got me thinking. The next few days I went into panic mode at home when I would see him do odd eye movements. I spent hours upon hours staring at him trying to get him to stare back and he never would. A fleeting thought of “what if he is blind?” crossed my mind but after some googling and talking to my husband we concluded that at 6 weeks old it’s too soon to say whether or not a baby should be focusing on you so we left it.

About a month later I took him to the doctor for a general check up and that is when everything changed. The doctor instantly noticed his eye movements and asked me if I wanted him to call me an ambulance. I was confused, scared, and alone at the doctor’s office with all three kids. I asked him if there was something serious going on and he just said that he will write me a note to take into the Children’s Hospital that day once I had a chance to arrange childcare.

I took him in and we were taken to the back almost immediately. They told me they were concerned about seizures and we would need to see a neurologist in the next 48 hours. After a slightly abnormal EEG we were put on seizure medication and referred to an ophthalmologist because they were also concerned about his lack of focus at now 3 months old.

Baby boy 3 months old wearing a yellow and white striped outfit. He is sucking on a blue soother. There are wires taped to his head with white bandage wrapped around them.
Timothy getting his EEG

The days between appointments felt like weeks and the weeks waiting for more tests felt like months. Finally after a second EEG and an MRI we were told they no longer believed it was seizure activity and that his eye movements were likely solely related to his eyesight. We were taken off the seizure medication and now we just had to wait to find out what was going on.

When we finally (a couple weeks later) saw the ophthalmologist it only took him 10 seconds of looking into Timothy’s eyes to tell us there was definitely a retinal issue and that we would need to go for further testing with a specialist 3 hours away. He told me Timothy wasn’t focusing on anything, tracking, or reacting to light as he should. He also said he couldn’t diagnose for sure but Timothy likely had something called Leber Congential Amaurosis or LCA.

We waited three months to see the specialist and receive the testing that confirmed the diagnosis of LCA but I had known it was true from the first mention of it. We won’t know for sure what Timothy has for vision until he can tell us but due to his lack of response it is expected that he has no usable vision and little to no light perception.

Right now we are still awaiting the results of the genetic testing to tell us which gene is affecting Timothy and get any information we can from that. But overall we know that there is not much available for treatment of genetic retinal conditions and currently there is no available treatments for LCA in Canada.

7 month old baby boy smiling with his hand in his mouth.
So sweet.

In these few months of knowing Timothy is blind our world has shifted and changed completely. We decided to dive right into learning everything we can in order to help Timothy grow up safe, strong, supported, and independent. Timothy is the sweetest baby with the biggest smile and the loudest giggles. He has brightened up our entire life with his presence and shown us a love deeper than we knew before. His story may have some twists and turns in it but we wouldn’t have it any other way.

7 thoughts on “Timothy’s Story

  1. Hugs mama. Our preemie girl (15 years old now) is SOP/ONH with parietal temporal occipital lobe brain damage from seizures as an infant. Reading your story I could remember and definitely relate to everything you shared. Coming from a mom of 4 with my daughter and her special needs, I can assure you that you aren’t alone out there and that happiness truly is blind. My life wasn’t truly complete until she and her twin sister arrived. Love and blessings.

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  2. Hugs mama. Our preemie girl (15 years old now) is SOP/ONH with parietal temporal occipital lobe brain damage from seizures as an infant. Reading your story I could remember and definitely relate to everything you shared. Coming from a mom of 4 with my daughter and her special needs, I can assure you that you aren’t alone out there and that happiness truly is blind. My life wasn’t truly complete until she and her twin sister arrived. Love and blessings.

    Like

  3. Welcome to the world of blogging and parenting a child with a visual impairment. We’ve been on this journey for 7 years as my son unexpectedly began losing sight at the age of 10. He’s 17 now, legally blind and thriving. Please keep sharing and learning and reaching out. Kim

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