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.
I knew I was pregnant before I saw those pink lines. I don’t know how but I just did.
I was only 18. I was on birth control. I was in university and living with my parents still. My relationship wasn’t the most stable and I wasn’t sure how he’d react but I knew what I wanted to do the second the thought popped into my mind.
I remember taking the test upstairs in the bathroom during my youngest sister’s birthday dinner. It didn’t look like anything was there so I threw it out. When I came back later to really get rid of it so no one saw, there looked to be a second line. And even though the box says to disregard anything past 10 minutes, I knew I shouldn’t.
I waited a couple days and decided to take another test. This time in the university bathroom right before my statistics final. It was a blazing positive. And although I really had thought I was pregnant, my mind was spinning. I couldn’t focus at all and I ended up walking out of the exam.
I told my boyfriend at the time and his response was mostly denial. Even after I saw a doctor at the University he didn’t believe me. For some reason he thought we couldn’t be “sure” until the 12 week ultrasound they had booked for me that was still weeks away.
Baby Bump.
He begged me not to tell anyone and went on living as though there was nothing to worry about. Luckily I wasn’t that uninformed and I made sure to take care of myself and not do anything that could be harmful. But I let him pretend that there was nothing going on, I don’t know why, looking back I think it was to save myself the headache.
I went to the 12 week ultrasound alone. Everything I had done at that point had been alone. I had cabbed from work and made up some excuse to my dad who usually picked me up. And then had made plans to meet my boyfriend after work at a restaurant.
When I slid the picture across the table you would have thought I never uttered a word about the possibility of a pregnancy. He was honestly shocked. I can’t help but laugh at that image in my mind now wondering how he could really be so naieve.
After that things got stressful. Not physically. I had barely felt any nausea or really any symptoms at all. But emotionally things were hard. He wasn’t particularly excited about the situation and he was very clear that it was to be kept a secret until a decision was made. Although I made it very clear from the start that my decision was already made.
The next couple months were full of secrets. I had to sneak out of work again to go get my 18 week ultrasound. I could only share the news of finding out I was having a girl with my best friend. It was a lonely and confusing time.
Then around 20 weeks I remember sitting on the couch and my pajama shirt riding up a little. My mom made a comment about me looking a little bloated and tried to touch my stomach. I all but jumped out of my skin. Terrified the baby would kick at the exact wrong time.
Knowing that the jig was almost up I told my boyfriend it couldn’t wait any longer. I was starting to show and it was getting too far along. His first response when I said I was going to tell them was that he should just leave town back to his mom’s since they’d be so mad (sometimes I wish I told him to go but I know that is selfish). After some thought he decided to stay but he came up with a story that I was expected to follow. To keep the heat on myself. I was to tell them that I just found out a few weeks before and that I had just told him that day. And because I felt like I had no choice and I didn’t know how to explain why I’ve been hiding it for 5 months, I told the story.
When I told my mom I was pregnant she said “Are you sure?”. Oh yes I was sure. But from the very first night I told them, they were supportive. They never tried to make me feel bad or like I was disappointing them.
The following months were fairly calm. When my seasonal job ended I started working at a maternity store that gave employees a big discount. I was in university and still attended classes. I celebrated my 19th birthday quietly at home. And I did what was needed to prepare to bring home a baby. My parents never pressured me to move out or drop out of school. They helped me rearrange things in the house so that we would be able to mainly have the basement space as our own. I bought a TON of baby gear during baby days at Toys R’ Us and my mom threw me an amazing baby shower where people really spoiled us.
Baby Shower Day!
For that period of time it seemed as though everyone (including my boyfriend) was on board and excited for the new arrival. I was starting to feel prepared.
I was due on December 22nd but I really didn’t want to be in the hospital for Christmas. One because that didn’t sound like a great way to spend my Christmas and two because I didn’t think sharing your birthday with Christmas would be very fun.
But nine days before my due date I remember slightly waking up to a weird popping sound just before 6 in the morning and as I laid there for a minute I started to feel the gushing. My water had broke.
Being my first baby, and being 19, I had no idea what to expect. I thought your water just breaking was really only a thing that happened in shows. Everyone I had known made it seem like there was hours of contractions before their water maybe broke or that the doctors had to do it for them. So when I woke up to that with no previous signs of labor I definitely went back to feeling unprepared.
I still remember how much water it was. I never thought it would be SO much. And I remember being confused about where the pain was. Oh those innocent 15 minutes before my first contraction hit haha. I was changing in the bathroom telling my mom I didn’t really feel anything when I got the first one. It hit me out of nowhere and it was long. I started having contractions 5 minutes apart and 1 minute in length from the very first one. Since I was struggling and my water had already broke we decided to head to the hospital pretty quickly.
I had to stop several times in the hallways to fold myself into a ball and struggle through the contractions. When we finally got to the right floor they told me to go change and then they would check how dilated I was. Since I was only 38 weeks and my doctor was pretty hands off I had never had a cervical check before. The nurses face when she checked looked so confused I started to feel embarrassed. All I was thinking was that here I am this little 19 year old folding over in the hallway in unbearable pain and I’m probably not even dilated yet and am about to be sent home to wait.
But I definitely misread that confusion as my triage bed was quickly rolled down the hall and nurses were trying to set up so quickly they were dropping the sterile tools on the ground in a panic. I was dilated to 9 cm.
I was scared because my mom was still downstairs registering me and I wasn’t prepared to have a fully natural delivery. Luckily I was saved that fear when the OB came and checked me and told me that we were gonna be awhile since the baby was facing the wrong way. So even though I was already 9 cm I was allowed to receive an epidural and we weren’t in a hurry.
After that things were pretty calm for being in active labor. The epidural made the contractions barely noticeable. It was a few hours until I was told I could start pushing. It was just the nurse, my mom, my boyfriend, and me. When I was close to delivering they brought in the doctor (and six interns) and I was still pretty heavily numb. The epidural caused some struggles with delivery because I couldn’t tell when was the most effective time to push (during contractions) but soon enough she was here.
On December 13th 2013 at 2:23pm, Hailey Olivia was born.
Have you ever thought back on a moment in time and been completely blown away wondering how you ended up at your current state. That sums up my second pregnancy.
If you told me everything that was about to happen when I peed on that stick in that public washroom waiting on my fate I probably wouldn’t have believed you.
We were young and in love. Maybe a little too consumed with the thoughts of our future but I wouldn’t change any of it because of where it lead us. See something most people think (sorry Mom) is that Charlotte was a surprise.
Baby Charlotte.
Well, that’s not exactly the case…
I had an IUD but it failed, I found out I was expecting in February 2017. And after shock, many tears and more worry then it was worth I learned I was in a very different relationship than my past one. James was supportive and even a little happy. But then as plans and dreams swirled in our minds we lost the baby.
And although it was maybe a little rash we decided we didn’t want to say goodbye to those plans and dreams, and by April I was pregnant again. But this time there was no shock and no tears. And not enough worry haha.
I quite quickly learned this pregnancy wasn’t going to be the easy breeze that my first one was physically (massive understatement). I had horrendous morning (all day) sickness, just moved out of my parents house with Hailey, just started a practicum for school, I was tired and always sick. And then the depression hit me.
I had thought I went through periods of depression before but they were nothing compared to this. It is probably the most unhappy I have ever felt in my life. And it was scary, not just for me but for James. This whole plan we had imagined wasn’t working out like we thought.
And then it got worse.
Sisters.
One day I was sitting on the couch watching a show before I had to leave for class and I felt a gush. Panicked I ran to the washroom prepared to see blood. But it wasn’t blood, it was more like water. My mom took me to the hospital where I tested positive for amniotic fluid and was told to prepare for the worst. At only 16 weeks there is no way a baby could survive birth.
We got wheeled off to an ultrasound and almost immediately were relieved when my little bean was wriggling away in there doing just fine. And because she could see how nervous and upset I was the nurse even shared with me that it was a girl.
After that there were more questions than there were ever answers. I was put on modified rest (I could still attend school and do light walking) for two weeks to wait for the anatomy scan and left without any reassurance that this pregnancy was going to continue.
Getting antsy doing nothing and being home mostly alone all the time was getting to me. So one day I thought I would take just a little trip out of the house to try on some wedding dresses (we were engaged at the time) I liked and to try to get some happy hormones going.
I didn’t really tell anyone where I was going because it was the middle of the day and I was planning to be home within a couple hours at most. I texted my closest friend a picture of me in my favorite dress impressed it still fit okay… and then I started seeing black dots. It felt like minutes but it was probably much less. I told the worker I wasn’t feeling good and as she came to walk me to a chair I fainted.
The next hour or so I only remember in small pieces of consciousness. I remember the firefighters and EMT arriving, although I didn’t see any of them, one of their voices sounded so much like Sandra Bullock haha. I remember them lifting me and pulling me out of the wedding dress while I was still mainly out. And I remember as I came to that I couldn’t move one side of my body.
The time I fainted in a Wedding Dress.
I remember the urgency of the EMT when they radioed that they had a pregnant 22 year old having signs of a stroke. I remember how fast we were going turning a 30 minutes drive into a little less than 15 minutes. And all I could think about was Hailey and how no one knew where I was.
I had so many people around me immediately upon arrival. I remember the frustration I felt when I couldn’t lift my leg. I remember the feeling of my earrings being ripped out. I remember the claustrophobia I felt in the MRI machine unable to move.
And then I remember the sudden calm. It wasn’t a stroke. (I would later find out it was a hemiplegic migraine causing neurological symptoms).
And as much as that day still goes down as my most embarrassing day it was the push they needed to get me into more monitoring.
I started with the high risk OB clinic and had appointments weekly; one week with the OB, the next week with maternal fetal medicine for ultrasounds. They discovered the cause of my waters leaking. Something called a Chorioamniotic separation, the chorion layer and amnion layer of the placenta had separated from each other which leaves the baby sort of “free floating” in the placenta. The biggest risk they told us was that amniotic bands could form and could cause strangulation to limbs or worse case scenario to the baby herself. Due to the risk we were offered a medical late term abortion (I was over 20 weeks at this point). But we didn’t want that. So knowing the risk we decided to hope for the best.
The stress was immense. We would be monitored by ultrasound to watch fluid levels and growth and to look for any signs of amniotic bands forming. They told me if I made it to 24 weeks and she had to be born that there would be a fighting chance. And so every day became a challenge to get one day closer to viability.
I struggled for months with threatened preterm labor. If it wasn’t contractions, it was fluid leaking. I think most of the nurses in Labor and Delivery knew us by name we were there so often. We had steroid shots for Charlotte’s lungs. We did some time on the prenatal ward. But we were making it through, viability came and went and she was still in there growing away.
Then on Thanksgiving I felt like I had got a UTI. What’s the big deal? Well unfortunately a UTI in pregnancy can lead to contractions and preterm labor. So in we went again. A quick check and a prescription later we were sent on our way. But a couple days later the pain had gotten much worse.
IV Treatment.
Back in L&D for the thousandth (or so) time we learned that my UTI was resistant to the type of antibiotic they gave me and it had travelled to my kidneys. I was admitted and put on a harsh antibiotic (my options were limited because of allergies and my pregnancy). I got released on my birthday but as everything in this pregnancy it didn’t end there.
This kidney infection just wouldn’t go away and it was causing preterm labor contractions. So in the end it was decided I would do some at home IV treatment for a few days to try and kick it for good. Well a few days turned into 10 but I was finally declared infection free.
After that I had maybe a handful of peaceful days before I ended up back in L&D but this time it wasn’t for the infection. I was having contractions and they felt REAL. And they were. I was dilating and it seemed like I was progressing into active labor. But at only 34 weeks they didn’t want to touch it. This meant that I was too far along for them to give me the drugs to attempt to stop the contractions, but since I wasn’t term they also didn’t want to do anything to encourage the labor to progress. This resulted in three days of consistent contractions with no real pain relief and no end in sight. As much as I knew it was better for her to stay put I couldn’t help but feel a tad of resentment to the 10 to 12 women I saw come and go with their babies.
Things finally hit a plateau and after some very emotional begging they allowed me to go home. I mean at this point I was seeing my high risk OB twice a week.
The days following that adventure were some of the calmest. I attended school (yeah I was still attending college this whole time), and we took Hailey on a family date to zoo lights which is a night I will always treasure. Things were going okay at the beginning of the next week and James job was slow so he decided to go work for the day with his Dad about an hour and a half away. I had an OB appointment in the morning and then classes in the afternoon so I was going to be checked up on and busy.
When I went to my OB I learned that baby girl was breech again (she kept flipping) and was told that if she stayed that way we would need to do a c-section. Everything else looked okay, I hadn’t dilated anymore than I was previously, and I was feeling pretty good. When I asked the OB if there was anything I needed to do before our next appointment in two days she just said “stay pregnant”…ha if only it were that easy.
I went home from my appointment and decided I would take a nap before school and awhile later I woke up in a panic. I couldn’t quite place why but as I laid there for a few minutes I realized I wasn’t feeling movement from my usually very active baby. So I continued to lay there. I pushed at my belly, I drank something sugary, and I waited. Still nothing. I knew the drill was 6 movements in two hours so as I drew closer to that mark with no signs of movement I decided to go get checked out.
I was almost embarrassed to show up at L&D since I had been there so often and I had just been checked a few hours before at my OB office. And that embarrassment grew when she started moving around a ton the minute they attached the monitors. But due to my pregnancy history they decided to keep me for a couple hours. I sent James a text that my mom took me in, we were all good, and that I’d let him know if I was still going to be at the hospital when he got back to the city.
Meeting Charlotte.
It was getting close to the end of my monitoring when all of the sudden monitors started sounding alarms and my little area was filled with doctors and nurses telling me to move into different positions. The baby’s heart rate had dropped dramatically. It went back up fairly quickly but they decided that added a couple more hours to my monitoring so I sent James a text that I would likely still be there and that he could come replace my mom when he was back.
I sent my mom to the car to grab my phone charger and I got to take a quick break from the monitors to go pee (I was 35 weeks pregnant after all) but when I came back to the room it happened again. It still went back up but the doctor, one who had been the recipient of my emotional begging to go home the previous week, decided that he was no longer comfortable waiting and that I would undergo an emergency c-section in an hour. Sooner if it dropped again.
My head was spinning. I was terrified of the thought of a c-section. And I was alone. My mom was away getting my charger; James was over an hour from the city. I wasn’t prepared for this when I went in (although that sounds silly after everything).
I had to call James and tell him that he would likely miss the birth of his daughter. I could barely keep it together I was so scared. I had to call Hailey and tell her mommy wasn’t coming home tonight because she was having the baby early. And then I just sat there and panicked until they walked me to the OR.
When I got there I was surprised at how bright it was and how small the table seemed. There were a lot of people. Doctors and nurses for the surgery and the NICU team. My mom had to wait outside until they began.
The freezing needle wasn’t as scary as I was expecting but when they told me they were going to start and I could still feel my toes my heart jumped into my throat a little. But I didn’t feel anything…well I felt stuff but not pain. The best description I have ever heard of a c-section is that it’s like unpacking a suitcase, and you are the suitcase.
I was much calmer when my mom got to join me so I wasn’t alone, and I was happy they allowed her to video the moment Charlotte was born so James could see it.
And so on November 28th 2017 at 7:30pm at 35 weeks and 3 day’s gestation my little 6lbs 3 oz Charlotte Grace was born.
The pregnancy and birth experience were nothing like the plans and dreams we had in our mind for it but the entire struggle was made worth it when we finally got to hold our little girl together. That part of the dream came true.
Finally.
Thank you for reading our story and joining us on this journey!
Everyone knows what the NICU is. But you don’t know what the NICU feels like until you get there.
I never expected to end up there when I found out I was pregnant with my second. But when my amniotic fluid started leaking at 16 weeks pregnant it became clear that there was only two ways this could go. And let’s just say that premature birth was my best case scenario.
Charlotte Grace
I went through hell with that pregnancy and was terrified for most of it. But my little fighter held out. It wasn’t until 35 weeks and 3 days that she was showing signs of distress and I was carted off for an emergency c-section.
She was taken to the NICU before I was put back together and I didn’t get to really hold her for over an hour. The nurse said they’d take me to her on the way to post partum and that was the first time I entered the NICU.
It was a weird and scary feeling. It was kind of dark because it was evening. And since Charlotte was a new arrival she was in the most critical section for the time being with one nurse to a max of two babies. The main thing I remember from that moment is the beeping from all of the monitors.
The baby beside her was a mere 1 pound. A micro preemie. Charlotte looked out of place next to her. After all she was a whopping 6 pounds 3 oz, quite large for a preemie.
I only got to hold her for just a few minutes before the nurse said she needed to take me to post partum.
I had just had a major surgery but I wanted to see my baby. One nurse told me that since Charlotte was doing so well with no issues they might release her to my room the next day.
So I used everything I had left to make myself stand because all I needed to do was move from the bed to a wheel chair to go back and visit. I wanted to bond and breastfeed and ensure she was doing well enough to be released to me, where she belonged.
I spent the entire night awake with her and then went back to my room for a little rest when my mom needed to get going home. A few hours later, alone at the hospital, I needed to be able to walk all the way from post partum to the NICU if I wanted to go. It was an excruciating walk with my barely held together body.
Bonding with Mom.
That walk felt a little longer each time I did it.
When I entered the NICU I went back to her spot only to discover she wasn’t there. They had moved her to the final section, where you go before you go home. Which I found out after the panic of not being able to find my baby. And that is when I first felt like I had no say over my own daughter.
They told me she was doing well but was slow on her bottles. And said if she didn’t finish her bottle the next feed they would put a nose tube in. Then my unit called me to come back so the doctor could check on my incision. I told the nurse I’d be back to feed her as soon as I could. And I started the long walk back.
When I made it back to the NICU the tube was in. I was angry and upset. They didn’t even ask me. Isn’t this my baby, don’t I have a say?
The tube meant a 3 day stay at least because they wouldn’t discharge until it had been out for 2 days.
Those next couple days were emotionally exhausting. I was furious that my nurse wouldn’t even let me attempt to breastfeed (the NICU time affected my breastfeeding journey greatly) and I was in major pain from pushing myself so hard after surgery.
Snoozing.
The NICU is a place of high emotions. There was honestly a point I felt like they just wanted to keep my baby there because she was cute (irrational post partum hormones talking).
As much as you appreciate everything the NICU does for babies, being there during the already fragile post partum period is extremely hard emotionally and can bring out feelings you don’t expect.
When I got a different night nurse I figured it was my chance to advocate for breastfeeding. He told me if she did breast and bottle well through the night he’d take the tube out. And so we did it.
It was the first time through this experience that I felt heard. The first time I felt like I was her parent.
Sister Cuddles.
This nurse advocated for me with the doctors and he did everything he could to get us on the road to discharge.
The next night we were in the rooming in room. It’s kind of like a hotel room in the ward often used for parents who live out of town or for a trial run of having the baby off monitors and with parents for a night before discharge.
That night was when Hailey could finally meet her sister. It was all consuming in the NICU and I felt bad for having Hailey be so left behind on those days. The next afternoon was going to be Hailey’s 4th birthday party and I remember her asking me if I was going to be there. I wanted to be there SO badly because I already felt like I had abandoned her since having Charlotte but I was also scared (overtired and a bit paranoid) that if I left they would put the nose tube back in Charlotte.
Luckily I still had my male nurse and he advocated for us to the doctors big time. Charlotte had never had breathing problems, never set off the monitors for heart rate or oxygen levels. She was doing good.
Taking Charlotte Home.
The doctor brought me in to examine Charlotte and said “I hear you have a birthday party today” and we were given the green light to finally take our baby home.
When we walked out of the doors with Charlotte in the car seat I was so relieved to say goodbye to the NICU. But I still heard the beeping of monitors and machines and the pulsing of breast pumps for weeks after.
When I found myself as a young, single mother who was still in post secondary I didn’t think the world of dating would really be suited for me. In the time since my last relationship dating had become a whole new thing, commitment was out and casual was in. But casual was never my thing, and especially with a two year old to consider. I still believed in something long lasting.
So in my attempt to hack the dating system when I went online looking for a potential partner I was REALLY specific in my search. First I filtered out anyone under the age of 25 (I was 22 at the time) because I figured that older equaled more willing to commit. Then I filtered out anyone who didn’t have kids, my theory being that someone with a kid couldn’t judge me for having one. Probably not the greatest science ever done but hey I figured it was my best shot.
My little ‘Mulan’
I had been on these apps for awhile and probably went through every profile of the guys who made it through my filters; it wasn’t getting me very far. But after an eventful night of Trick or Treating with my little Mulan I remember opening my app to a message, “Hey, What types of things do you like to do when you don’t have your little one?”. Clicking the profile I immediately thought “nope”. I didn’t recognize the profile so I knew it wasn’t one that had came up in my filtered search, I mean this guy was 20 years old, lived in a different town, and definitely did not have kids (he was cute though haha). Even though I figured the conversation wouldn’t lead anywhere I was getting a little tired of talking to 38 year olds who lived in their ex wives basement (for real) so I decided why not reply.
Zoo Lights!
Surprisingly the next day I found myself on the phone with this guy for over three hours. We talked about a lot; stories from growing up, our religious beliefs, our views, and our goals for the future. It was definitely not the type of conversation I was expecting to have with a 20 year old (because you know I was obviously much older and wiser at the age of 22). The one thing I remember the most about that phone call is that he asked me what I was looking for…friendship, something casual, a relationship, marriage? It was such an upfront question and it threw me off. I was thinking yikes it’s not like I’m going to marry you (I did haha) but I am looking for something committed and not casual.
Out of all of the people that I had tried to weed out through my super (eye roll) scientific plan the only person I ended up agreeing to actually meet was this 20 year old guy… James, if you haven’t caught on yet haha.
For our first date he took me to this little Italian restaurant and we ended up being there for 4 hours talking and learning about each other (while my sister and best friend thought I had been kidnapped since I hadn’t answered their texts). After that we almost seamlessly progressed into a relationship. We talked on the phone for hours on the days we didn’t see each other, and he would take any chance he got to drive up to see me. I introduced him to Hailey and he never made me feel like including her in our time together was a bother or a burden to him. I very quickly learned that my scientific method might have been off. He wasn’t over 25 and he didn’t have a kid of his own but he had the same wants and goals for his future and wanted us to be a part of reaching them.
Us.
Thank you for reading part one of our story. Stay tuned for part two!
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.
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.
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.
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.
Franceschetti’s Oculo-digital sign.
Thank you for taking time to read this post and sharing this journey with my family.
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.
‘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).
Christmas Tree Decorating
These are the four guidelines we decided upon to help us get through the holidays:
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.
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.
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.
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.
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!
When I was pregnant I was so excited that Timothy was going to be a little older than the girls were for his first Christmas (the girls were November and December babies). I thought it would all be so magical and fun for him. Fast forward to December and I just can’t seem to get into the holiday spirit. This is where the everyday struggle for acceptance comes in. Do I know Timothy is blind? Yes. Do I know he will be okay and have an amazing fulfilling life without sight? Yes. Is it hard to set up a Christmas tree full of ornaments and lights and have Timothy not even turn his head in that direction? Also yes.
Oh Christmas tree.
It is hard to watch my daughters’ eyes light up when they see the Christmas tree and know that he won’t experience that. That sadness can sometimes weigh me down but luckily I have amazing people around me who can bring me back to acceptance and happiness.
Timothy’s first Christmas.
My mom is one of those people. She dropped off a Christmas tree and ornaments for us but that wasn’t all. She put extra thought into how to allow Timothy to experience his first Christmas. A musical book of Christmas songs, ornaments with bells on them, even some cinnamon scented sticks for the tree. She made it possible for Timothy to experience the Christmas tree in a completely different way. I am so grateful to have such an amazing mom to help me through this journey and remind me of the true spirit of Christmas.
This is going to be my first real blog post and I couldn’t be more nervous. When I was thinking of starting this page there was always something that would hold me back from diving in. At first it was the thought of people reading personal details about my life (PS – Mom I would really appreciate it if you never read the marriage section) but I quickly got over that. Anyone who knows me would probably say I am an over-sharer anyway.
In the end the biggest reason it took me months to finally decide to jump in the blog pool was creating a name.
I always knew I wanted the name to incorporate the main reason I wanted to publicly share our journey. My son Timothy, who was born blind. Which you can read more about on this blog post:
What I didn’t know was how to incorporate it in a way that is positive. Finding out your child is blind comes with many feelings and I plan to address the good, the bad, and the ugly crying that came with it but the main focus of this blog and our everyday life with our family is the amazing world view you begin to have when you are not focused on how things look.
Thank-you for joining me and my family on this journey.
Happiness Is Blind 