Today Timothy turns Three. The number that has given me so many different emotions over the past few months has arrived.
Three feels like a big one for me. It feels scary. Three is the end of babyhood and the beginning of childhood. I mean can you believe Timothy will be attending school in 6 short months?!
He will be leaving the safe and secure bubble of home. I won’t be able to protect him from every stare, every comment, every question. I won’t be able to keep him in the little world I’ve created around him. I wonder all the time what this year will mean for him.
Three seems to make our delays and differences feel more real. At two you are still sort of a baby and that made it easier to accept being behind but at three it feels different. I worry what it will feel like for him to be in a room of his peers, will he know he is different? Have I given him enough love and confidence in himself to not care that he is?
To me, he is the amazing loving little boy I know because of his differences. I wonder if his teachers will see that. If the other parents will see it. If he will make friends that see it.
Everyone has told me how good it will be for the other kids to have Timothy in their classroom to learn about inclusion. And it will be. But I don’t want my son to just be a lesson in inclusion, I want him to be a kid someone likes to sit by, I want him to be a kid someone asks to play with, I want him to just be a kid.
I think too often when people see a kid with a disability they see a “disabled kid” and nothing else. But I don’t want that for Timothy (or anyone). The word disability isn’t a bad word and it should be said but it is only a part of a person it is not their entire identity. Timothy is a kid with a disability. He is Timothy first. He is a kid first. Timothy is a kid who loves to sing, to jump, to swing, to go outside. He is a kid who loves chocolate and who throws temper tantrums when he doesn’t get his way. For the past three years I’ve been able to make sure he could be a kid first and now I have to hope that the rest of his world can do the same.
So three feels like a big one for me. It feels scary. Because three is the beginning of childhood. And I’m not ready to trust the world with my baby just yet.
Three years of loving you, my bright smiley boy. Happy Birthday Teeny Beans.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
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.
Naming your baby is one of the first big decisions you will make for your child.
A lot of people have names picked out for their future kids at a young age. Something from a book or a movie, someone they look up to, or just a name they heard that stuck with them.
I had several names that I liked over the years but never really one specific name that I knew I wanted to name my children. It actually took quite a while during my pregnancies to decide on their names. But I wasn’t the type to wait and see what I felt fit when the baby was born. I’m way too indecisive for that, my children would have been nameless for months.
I had thought I settled on a boy name I really liked before we found out that Charlotte was a girl but then it became the most popular boy name around. And when I found out I was having a boy for my third I just couldn’t imagine having my son be the 7th Noah in his classroom every year haha. So we were back to square one. Except this time I did have a specific name I wanted to include, two actually.
Something I haven’t talked about much on here before is the fact that I have lost two of my brothers. Eddie in 2010 and Tim in 2017. So finding out we were having the first grandson in the family was emotional for many reasons, and it was important to me to honor the memory of my brothers in someway.
James and I spent months going over hundreds and hundreds of baby boy names. All while trying to accommodate two middle names. Mixing and matching names to figure out what order flowed the best and what went with our last name (not a lot does – trust me) but we could never agree on one that felt right.
Then one day the thought came to me to just skip an original first name altogether and use one of my brothers’ names as his first name and one as his middle name. It was an emotional choice. Something I felt the pull to do as the loss of my brothers has shaped my life in so many ways. I also really wanted to keep the names together because it didn’t feel right to have one without the other. It was something I tried out in my head for a few weeks and kept to myself until I was sure I wanted to bring it up as an idea. I mean was James really going to say no to something that sentimental and meaningful? Of course not (there is also some sort of batman connection to the name he liked haha) but I was still nervous because I wanted him to feel like that was the right name for our son.
Once I felt like it was the only name I could truly think of using I decided to bring it up and luckily James agreed that it felt like the perfect fit. We also decided out of respect we would ask my immediate family how they felt about it because we wanted it to be a nice way to remember my brothers and not a constant painful reminder of their loss. Everyone was on board and it made welcoming the first grandson even more special and emotional.
Now everyday I get to remember two people I love deeply through my little boy who is the most special person I’ve ever met.
It was the first big decision we were making for our baby and it was made out of immense love. I can’t wait until the day I can tell him all about the two uncles he got his name from.
We decided on three kids early on. We also decided we wanted to try to not make the end of the year anymore expensive than it already was so we’d aim for a spring baby this time haha.
The plan was to try from August to November and if it didn’t happen then we’d wait till the next year. But on August 21 2018 I decided to take a pregnancy test I had at home. I don’t know why I chose to, I hadn’t missed my period yet and I wasn’t feeling any sort of way. I just took it one evening after dinner. And it was positive.
I wasn’t shocked exactly but I was surprised. I didn’t really have the feeling I was pregnant that I had with my girls. So I went downstairs where James was playing with 8 month old Charlotte and tossed him the test. Baby number three was on it’s way.
The nausea hit pretty quickly but luckily it was mild compared to how I felt with Charlotte. The baby bump though? That hit even quicker. By number three my body just assumed position.
At my first ultrasound I was dated to be due on May 2nd. A true spring baby. But anxiety of Charlotte’s early delivery had me doing the math to be prepared for a baby at the end of March.
I was high risk this time due to my eventful second pregnancy and since it would be just under 18 months since my emergency c-section, I decided I would schedule a c-section this time.
I was followed earlier and more often by the same high risk OB as before but she said she felt my energy was different this time and that it would be a smoother road. And it was for the most part.
At 16 weeks I decided to sneak away during my lunch break at work to go for a early scan to find out the sex of the baby. I knew James would be happy either way but I also knew having a boy for our last baby would be the cherry on top. I had a feeling it was a boy but I couldn’t cling to it because there were no boy’s in this generation of our family. We have two girls, and 7 nieces between us. So when the ultrasound tech found it was a boy I was elated. We were having a son, and the first grandson on either side.
That night I gifted James a little newborn varsity jacket and baby size football. He couldn’t wait for his baby boy.
After that things were pretty calm for a while. We started to plan his room theme, Batman, and we picked out his name. It was a nice change of pace from my second pregnancy. But I still had that anxiety in the back of my mind about an early delivery.
As I started getting closer to the end I noticed I felt a lot heavier this time. My belly was bordering on painful to carry around. It was low and massive. I was measuring 7 weeks ahead by fundal height. So off to another ultrasound, the one where I figured the other shoe would drop.
But it came back all good. I had a big baby in there (no surprise as Charlotte was too) and my fluid level was teetering on polyhydraminos (too much amniotic fluid) but not over the cusp where worry should set in…but it did. The extra fluid and the heavy baby had me having contractions on and off almost daily when I was still only 30ish weeks along. I tried to remain positive that I would make it to at least 37 weeks, my personal goal, but I also prepared not to.
Then on St. Patrick’s Day (March 17) at 33 weeks and 3 days the contractions became increasingly painful and weren’t letting up. I knew they weren’t Braxton hicks (practice contractions) and I was terrified. That was 2 weeks more premature than Charlotte. I went to L&D still hoping to be told I’m fine go home. But I wasn’t told that. I was dilating and contracting somewhat regularly, I was in preterm labor. They told me I would be going for my c-section that day but they also decided to try a medication to slow contractions. Over 32 weeks this medication doesn’t always work but we figured it was worth a shot. And it was, as it slowed things down enough to have them cancel the c-section and just admit me overnight for monitoring.
Things stayed calm and I even got to have a 3D scan of my cute chunky little man before I was sent home where the ultrasound tech affectionately gave him the nickname “Timothy the tank” haha. He was weighing an estimated 7 pounds already which is what they suspected was putting me into early labor.
My OB decided we should just accept the fact he was probably making an earlier than anticipated entrance (definitely wouldn’t be making my scheduled c-section for April 24th) and that maybe I wanted to consider a new birth plan just in case. Choosing to try a vaginal delivery would maybe buy us more time, even in hours, if we went into preterm labor again.
I wasn’t sure as I was scared from things I had read about trying to have a vaginal delivery less than 18 months after a c-section but the idea of an easier recovery and most importantly the chance to actually hold my baby before he was whisked off to the NICU was appealing to me. James and I discussed the idea and concluded that I would decide if I wanted to try in the moment.
We also decided to move our maternity photos up a couple weeks, just in case. We moved them up to March 30th. I would be 35 weeks and 2 days then, and I had Charlotte at 35 weeks and 3 days. So it felt safe.
I never did maternity photos with my other kids but it was a request I had for my last baby. I wanted to have them to remember that time. The day was really fun, I did my hair and make up, I got the girls all cute, and we went to the park and captured this special time in our lives. There were some jokes that the walking was going to put me into labor but I was feeling really good, no contractions, just enjoying time with my family of 4. Until we got back home…
Around 6 in the evening the contractions started again. Like St.Patrick’s Day but stronger. I got myself into a warm bath trying to ease the discomfort but I knew it was time. Although I was trying to convince James that it wasn’t, I wasn’t ready yet, I didn’t want to face the NICU again, it couldn’t be time. But my contractions were coming every 4 to 5 minutes and were intense. So we called my sister to come over for the girls, and headed to the hospital.
When I got there I was 4 cm and they knew there was no stopping it this time. And as discussed, in the moment I decided to ask if I could try to deliver without a c-section. As long as I could get an epidural because OUCH. I was told they actually prefer that with VBAC (vaginal birth after cesarean) in case it needs to become a c-section urgently so we signed the papers agreeing to the plan. And moved into L&D.
An added benefit of not having a surgery was that I could have two people in the delivery room with me. So we called my mom, who was fairly bummed she wasn’t going to be there, and had her join. My mom has been there for all of my deliveries.
Labor hurts a lot, in case no one has told you that. And due to a busy night on the ward I was waiting hours for my epidural, at which point I really regretted my choice (if I had a c-section he would be out by now!). But eventually it was my turn and after missing it twice (not a fun feeling) he got it in place and I could finally breathe a little. The hours ticked by, and after 2 am the Doctor came in to check me. She said I was about an 8 but if she popped my water it might help things along. Alright. She broke my water and started to leave the room but had to turn right back around, it was time to push.
I had only begun pushing when there started to be some heart deceleration’s in Timothy. They told me if I didn’t get him out in the next two pushes we might need to consider switching to a c-section. No way was that happening. I did not go through these last several hours of pain just to end up with a c-section still. And so I did it. I got him out in 8 minutes of pushing and behind him a tidal wave of extra fluid (RIP to James’ shoes haha).
And then I finally got to hold my baby boy. Born on March 31st 2019 at 2:43 am. At 35 weeks and 3 days just like Charlotte, and weighing 6 lbs 10 oz just like Hailey. He was perfect. He is perfect.
As a young single mother the idea of having to become a blended family was something that scared me.
Will anyone want to date someone who is a mom? Will they accept my child? What will it look like to create a family with someone who isn’t my daughter’s biological parent?
It’s not like being a blended family is something out of the norm these days, almost every person I know comes from a blended family. I even grew up in a blended family technically but since the word “step” was never used in our house it didn’t really feel like it.
I knew the type of relationship we had with my daughter’s biological father would also greatly determine the way our blended family worked. At first I was hoping to have a more modern family where we could all get along and support our daughter together. But unfortunately what I feared would happen, did, and my daughter’s biological father decided to not be a participant in her life very quickly after we were no longer together.
When James and I started dating, my daughter, Hailey, was always a big part of our discussions about our relationship and any of our plans for a future together. Unlike some people I had talked with, James never made me feel like Hailey was some unwanted baggage that came along with me. See he also grew up in a blended family and was raised by his mom and “step-dad” (just dad to him though) which gave him a unique understanding and care about how he handled a relationship with a single mom. He made me feel like getting to know Hailey was a benefit to dating me instead of a burden.
I remember very clearly the day that Hailey started to call James, “dad”, it was after he attended the Father’s Day celebration at her daycare. He left work early to attend so that she didn’t have to be the only one without a dad to show up. When they got back home after, she kept saying “daddy” over and over again, and it has stuck ever since.
We were engaged and I was expecting our first child together when this took place. We had discussed it before because she would occasionally refer to him as “dad” or “daddy” but it was never consistent. Our biggest worry was that we did not want her to feel like she had to refer to him as that or that she couldn’t refer to him as that if she wanted to. We wanted it to be her choice.
Unfortunately this choice was met with some criticism from people at the time who questioned if it was a good idea for her to be getting too attached to another “dad” but we tried to not let them bother us.
One of the hardest parts of blending a family for me so far has honestly been the opinions from others. Everyone seems to have one and they always feel the need to share them. Why? I’m not sure. I think what works for one family to the next is always going to be individual and without being the people in the actual situation it is unfair to judge the decisions being made.
And so ignoring the noise from others our next big decision came into play a few months later when I experienced a scary event during my pregnancy. I ended up collapsing while I was out on my own and it seemed as if I was having a stroke (I will talk about this more in Charlotte’s pregnancy story). All I really remember from being in the ambulance was thinking about what happens to Hailey if I don’t make it.
Well spoiler alert… I made it. But this moment opened my eyes to a fear so big that I couldn’t ignore it. It was unimaginable to me that if something were to ever happen to me, Hailey would be taken from the life she knows, to be forced into a life with someone who left her behind (and was also abusive but that’s a story for another time).
This is when we decided we wanted to make James being “dad” official and we began to pursue a step-parent adoption.
It was A LOT of paperwork. It took 3 months of work leading up to our wedding, and another 3 months of work after our wedding before we had it all submitted to the court. But it was all worth it on August 15 2018 when it became official and Hailey gained the same last name as her family.
A piece of paper saying that James is Hailey’s dad isn’t what we needed to feel like a complete family but it is what we needed to feel like Hailey was safe and protected in any circumstance.
We know that we have only begun this journey and that there are many things that will come up and many obstacles to be worked through as Hailey gets older as being a blended family never ends but for now we are happy to be in the place we are as a family.
For only two weeks my body was making a home for another baby. A baby we originally never thought we would have. Number four.
And then all of the sudden it was gone. And although I’ve lost others before this, the pain, heartbreak and guilt swallowed me whole.
See I was terrified when I found out I was pregnant. I did this weird mixture of hysterical laughing and bawling.
I had thought I might be pregnant after a random Thursday where I just couldn’t stop crying… but I didn’t actually believe the test would be positive. And so clearly positive, a whole SIX days before my period was even due.
I thought for sure this one was here to stay.
I was too scared to let myself show any excitement. Scared because although we had decided we wanted a fourth it wasn’t supposed to happen yet. Scared because I knew even people in our circle would question and judge our decision to expand our family. Scared what a baby would mean for Timothy at this age. Scared that this was my last shot at this and I wanted to do it all perfectly (which I already felt like I was failing from my initial response). Scared because we had a loss in December and I couldn’t help but feel a tinge of nervousness anytime I went to pee.
But through the scared and nervous emotions we began to plan. We discussed items we wanted this time (like a bassinet). We talked about baby names. We gave ourselves a pat on the back for buying a mini van. We ordered a little rainbow newborn gown. We talked about hospitals and doctors and logistics. We talked about how old we would be when all four of our kids had graduated.
And then it was gone. The conversations. The planning. The baby was gone. Those dark pink lines began to fade, a clear sign of the end.
During this process I have struggled with a lot of guilt about some of the negative emotions I had about being pregnant. How can I be sad now when I was scared? Well because I can be. Really it’s that simple. I can feel however I feel and it is all valid.
Because even though I wasn’t super excited yet…I still wanted this baby. And even though I was scared…I still wanted this baby. And even though it was unexpected…I still wanted this baby.
And they were taken from me before I had a chance to say how much I loved them and wanted them to be a part of our family. So I am sharing this today as my chance to say out loud that I loved this baby. I loved it, I wanted it, and I am heartbroken that it is gone.
So I will continue to hold on to these little pieces I have left that prove my baby was here for even a little while. Because it was, and if you have been through this before… your baby was here too.