I originally started writing for my daughter, Olivia. I was having (still have) a lot of guilt about the unbalanced time I spend between her and her brother. I know that this blog isn’t appropriate content for a 6 year old, but my hope is that she will read this when she is older and understand. And if she feels that I have treated her inequitably, that she will forgive me.
I do try. I do try to create moments that are just for the two of us.
I LOVE coffee (and wine) but I LOVE coffee. One thing that I really used to enjoy doing on my own was to wake up early and walk the 6km to Starbucks with our dog, Suma. Now that Olivia is older, I have invited her to join me. I will wake her up at 6:30am and with her sometimes still in her pajamas, we will walk to Starbucks.
I beat myself up a lot. I judge myself. But when I read the above excerpt from the book “What Happened To You” I realized that I am doing something right. If the one thing that Kate really appreciated was the moment when her mom woke her up in the middle of the night for a bowl of Cheerios, then hopefully Olivia views our Starbucks mornings the same way. I have created my own version of a “Cereal Moment” with my daughter. This is the one special thing that is ours and only ours. I am really proud of that.
We went to the beach today. I was with my kids in the water when I heard a familiar voice asking my husband a question about our beach tent.
I turned and looked and didn’t immediately recognize the woman. But I did notice her perfect bald head hidden by a large sunhat. It took me a minute, but then I knew who it was.
I called to her by name and we chatted for awhile about our kids and our summer plans. I did not acknowledge what was clearly going on with her. As I was talking with her I thought about it… Do I bring up what is going on?…If so, how do I bring it up?…She seems to be enjoying having a “normal conversation”, maybe she is tired of talking about cancer?…Maybe she is wanting to enjoy feeling “normal” for a second?…. I can definitely relate to that. I decided to wait until her kids swam away. They didn’t.
We eventually said our goodbyes and started packing up to leave the beach. But I had this gnawing feeling…. I needed to talk with her again. How could I leave pretending like everything was “fine” when it was clear that things weren’t fine for her.
By now her kids had swam away. I walked back towards her and I just told her that I didn’t know what was going on with her, and I shared that I was a cancer survivor (which by the way I NEVER talk about other than here) and to be honest, I don’t really remember what else I said because I became overwhelmed watching the tears roll down her cheeks. And she said, “Thank you for acknowledging me”.
I was grateful that my sunglasses were covering my eyes which had now welled up with tears.
She had said thank you for acknowledging me….. So other people hadn’t? Other people had maybe had a similar small talk conversation with her but hadn’t wanted to go deeper? Hadn’t wanted to acknowledge that she was clearly going through something? Hadn’t wanted to get a bit messy?
I do get it. I understand the avoidance. It is similar to when you learn that someone has lost a loved one and you don’t quite know what to say… I have friends who ask about my son all of the time and there are also people in my life who don’t, who have never asked. They don’t want to get messy.
I needed to be sensitive to the fact that her children were nearby. I didn’t know if she would want to share what was going on or not, but at least I gave her the opportunity. She did not share much with me. But what I learned was that she just wanted to be recognized, to be seen and to be acknowledged. That seemed to truly mean something to her.
Isn’t that what we all want?
I have felt that before. I have wanted to be seen. I have wanted to be seen beyond a bald head to stare at (and to perhaps feel sorry for from afar) but as a person who is going through something. My struggle with Oscar is different as I don’t show any physical signs. It is all internal.
We have amazing friends and family near and far who were there for us, who checked in and who continue to check in. I am also equally aware of the “friends” who didn’t. The good time friends. The friends who were there when times were good and who have had difficulty acknowledging when times were tough.
Acknowledgement is so simple. Like kindness it costs nothing, but can mean so much.
After Oscar was first diagnosed, I was made aware of several different support groups relevant to our new situation. My parents eagerly joined these groups. I was a lot more hesitant. Perhaps I was in denial…
By the time Oscar was 4months old we had been through a lot and had learned of both of his diagnoses. It was easy to be in denial because even a “typical” 4 month old isn’t supposed to be doing too much (developmentally). I felt like I didn’t belong in those support groups. Or maybe it is more that I didn’t want to belong in those support groups.
I was convinced that my son was going to have a mild case (despite the neurologist telling us that his polymicrogyria was “extensive” and despite what the reading material said about 1P36 deletion syndrome provided to us by genetics). I was in denial. My social worker said that support groups are there to make people feel better, if they don’t make you feel better, then don’t participate. So I didn’t.
After some reflection, I think that you (or at least this was true for me) have to have gone through some of the stages of grief before a support group is helpful. This may have been another occasion when my rational brain was not communicating with my emotional brain. My rational brain knew of my son’s diagnoses but my emotional brain didn’t.
Over the last year I have achieved a lot more “acceptance”. I so desperately wish that things were different, but I am on the road towards acceptance. I think by having reached a certain level of acceptance with my son’s diagnoses I am now able to browse and occasionally participate in these various online support groups.
I had wanted to write a post about support groups a year ago when I first started my blog. I wanted to write about how I felt like they worked for some people and not for everyone. How they weren’t helpful for me. How they only took me deeper into this dark place I was in of uncertainty, denial and grief…I am glad I didn’t write that post back then, even though that is how I felt.
We have all been through so much. We know that things aren’t always going to be “fine”. We all want what is best for our kids and for our families. We are all balancing “regular life” with medical and therapy appointments. We all share a deep worry about the future. Without knowing me, they know me.
The other day was a struggle. Not anymore or any less of a struggle compared to any other day. I just felt it. And I hadn’t felt the struggle in a long time.
I was over it.
I had watched my son struggle to fall asleep the night before for over an hour. (I obviously had gone to check on him a couple of times to make sure that he was okay. We are trying to get him to fall asleep consistently on his own.) Eventually I ended up cuddling him to sleep. He woke up at 4am. We let him try to fall back to sleep on his own before ultimately giving in again.
Then of course we had to wake him up for his 7:30am medication. I always hate waking him up for his medication after he has had a bad night. He should be able to sleep in, but his medication schedule is too important. I am over not letting him sleep in.
I know… it seems like I am caving and developing bad habits. Maybe I am? Maybe he was getting a tooth? Maybe it is related to his polymicrogyria and his sleep/wake cycle? Or is that just my excuse to myself? I would say now he sleeps through the night 60-75% of the time. We have racked our brains trying to figure out the afternoon/bedtime routine that allows him to fall asleep and stay asleep. Unfortunately we haven’t discovered it yet.
I was expecting him to have a long nap that day and I was surprised when he woke after only an hour!!! Of course he didn’t fall back asleep. (Even with a cuddle.)
I am tired (literally and emotionally) of watching my son struggle to sleep.
I am over watching my son struggle to eat.
Almost every meal starts with crying, especially when we offer him a new food. I am tired of watching my son clamp his mouth shut, hold food in his mouth or spit it out. I just want him to eat! We have learned that we can’t force feed him because that doesn’t work either. Somedays I am over singing songs, listening to the baby shark song on repeat or the Frozen II soundtrack to help him relax during meals.
I am tired of stressing over what to make him for dinner. What is he going eat?… Do I try a new food that I think he will like? …. Or be “lazy” and give him something that I know he will eat easily and then maybe I can enjoy my dinner as well. Is he waking up in the night because he is hungry? Because he didn’t eat a good dinner? I don’t know.
I am over therapy. (Although I always do it.)
I am over labeling everything I see to help with speech and cognition. I am over speech and occupational therapy activities and physiotherapy exercises. I do get tired of the same flashing light toys that motivate my son to participate in his various therapeutic activities.
I am over it because my son struggles through all of it.
I am over the balancing act. I am over watching my daughter watch her brother do therapy. I am over the guilt of feeling like she is being left out.
For Oscar to grow and develop to the best of his ability, I understand that he needs to always be challenged. Most days I am good with it all. I relish with every one of his small accomplishments. But it is emotionally exhausting to watch your child struggle at almost everything they do.
I was over watching him struggle to sleep, to eat, to walk and to balance. I was over his frustration due to his inability to communicate or my inability to understand what he is trying to communicate. I was over the worry, the balance and the guilt.
Over the last couple of years I have definitely struggled more than my husband has with “getting over” everything that has happened. My husband and I both experienced the same events in regards to my son, but from a different distance.
This is how it had to happen, one of us had to be with our daughter while the other had to take care of Oscar’s urgent needs. The above excerpt taken from the book, What Happened To You? explains why I have developed a different, more sensitized stress-response system compared to my husband. I am the first grader.
My husband continues to be supportive of where I am but also encourages me to push the boundaries of my comfort zone. He has seemingly grieved, adapted and accepted our new normal more easily than I have (or will). He is maybe more like the fifth grader?
My husband and I have been a part of the same events, but we have experienced them differently. This explains why our stress-response systems are also different. Why he seems to be more “in balance” and why my stress response is now more sensitive.
Even though this analogy doesn’t fix anything for me, it did help me understand why I am the way I am and maybe why my husband is the way he is. The more I learn about trauma and traumatic experiences, the more able I feel to give myself some compassion for feeling the way that I do. I am hoping that this analogy can also help you to understand why you may have a different response to the same event compared to your spouse or partner. And maybe you too can give yourself a pass.
Not every woman who wants to be a mother is able to be a mother.
Not every mother feels comfortable celebrating her pregnancy because her pregnancy is filled with worry.
Not every mother is able to carry her child for 9 months.
Not every mother is able to hold their child when they are born.
Not every mother is able to capture a sweet newborn photo.
Not every mother is able to take their child home.
Not every mother is able to protect her child despite her best efforts.
Not every mother is able to hear their child’s sweet voice or celebrate their child’s first steps.
Not every mother will watch their child joyfully play with other children.
Not every mother will witness their child succeed at school.
Not every mother will get to cry watching their child move out on their own, because they never will.
Not every mother will watch their child grow old.
Not every mother is able to leave this earth knowing that her child will be okay.
Mother’s day is meant to be a day of celebration, but not every mother is able to celebrate. For some it may be a day of mourning. Another reminder.
I think about the Hospital for Sick Children in Toronto often. I spent a lot of time there as a child and now again as a mother. That hospital will be full this Mother’s Day as it is every holiday. I think about those moms. They will wake up on a small cot to the sound of hospital alarms. They won’t get to sleep in, or have their breakfast served in bed. Those mothers are arguably the moms who have sacrificed the most for their child. But they won’t be celebrated Sunday.
My mom was one of those mothers. I can’t say for certain if she spent Mother’s Day or her birthday in the hospital with me, but I remember my parents having a romantic anniversary dinner in the hospital cafeteria. I hope my mom knows that I can now see her sacrifice. I probably didn’t appreciate it enough before.
Of course this Mother’s Day I want to celebrate my mom. She has been through a lot in her life. Her experiences have taught her many things and I am fortunate that she is now passing those lessons on to me. She continues to help me grow in order to better myself and my family.
That quintessential lazy Sunday morning we almost never experience as a family because my husband is usually at work. This past Sunday was different, my husband was home and we all stayed in our pyjamas until almost 10:00am!
We started the morning with a nice breakfast and then Olivia was asking to see some pictures of her when she was young. We decided to look at some old photos from our vacation to Spain a few years ago. At that time we only had Olivia.
It was fun to relive that trip. The first picture was of my daughter in Plaza del Sol in the centre of Madrid. When looking at that picture, I can remember that I was stressed because she had barely slept the night before. My next thought was that I couldn’t believe that that had stressed me out. Was my only worry that she would be cranky? If I had only known what true stress was. If Oscar had barely slept, I would be panicking that he would have a seizure. Then I thought, how could we ever do a trip like that with Oscar?
The photos continued.
We went to a flamenco bar in Seville. Our one late night out with Olivia. (She had probably gone to bed at 9:30pm, so not even really that late). I thought, I could never or would never do that with Oscar. Why? I would be worried about his medication schedule and panicked with the lack of sleep causing an increased risk of seizures.
We finished with the pictures and went about the rest of the day.
As we started preparing dinner my husband said, “Alright, what is going on, you have been short with me all day.”… I had been???
Of course I denied it and we bickered a little bit and then I said that it must just be that I haven’t had a break in awhile. And of course my husband said to go take a break! So I took a minute. I made a tea and went upstairs.
Then I reflected…Why had I been short? I don’t want to be short. I then realized that I was feeling all of the emotions associated with grief. Why???
I had been reminded of the life that I used to have and was grieving the loss of that life. To some it may be difficult to understand why this can be so painful to someone, but it is.
I did not recognize or understand why I had been acting so emotionally. I wasn’t able to make that connection until I took a moment for reflection. The best way I have come to describe this is that the emotional part of my brain is unable to connect to the rational part of my brain.
I have mentioned this to my social worker before. Regardless of what my rational brain “knows”, it is sometimes still unable to neutralize what my emotional brain “feels”. I am learning that this is a common characteristic amongst people who have experienced trauma.
I have been in therapy for two years (less frequently now), I read about trauma, I work on myself and despite all “I know” there is still a disconnect in my brain. My rational brain is sometimes still unable to counterbalance my emotions. I think that the more frequently I can create a pathway between my emotional and rational brain the more often I will have an appropriate emotional response.
What I learned from this is that reflection helps.
What I learned is that in order to reflect, I need a second.
I think we all tell stories. We want to have control of our own narrative. The stories we choose to tell are the stories we want believed by others and by ourselves.
“One system creates a story for public consumption, and if we tell that story often enough, we are likely to start believing that it contains the whole truth. But the other system registers a different truth: how we experience the situation deep inside. It is this second system that needs to be accessed, befriended, and reconciled” (By Bessel Van Der Kolk)
In my physiotherapy practice I see this often amongst people who suffer from a chronic pain condition. They get so tired of dealing with pain that they learn to tune it out. These people still experience pain, but they are able to somehow mute the attention that they give to pain. The problem is that they then lose the ability to manage their pain because they become unaware of what makes them feel better or what makes them feel worse.
The first thing I suggest is that they start to periodically quantify their pain throughout the day. (This forces them to tune in.) This strategy hopefully reveals a pain pattern, encourages self exploration and I believe empowers them because they finally gain some control. I have come to understand that those same strategies can also be applied to people who have experienced trauma. Or at least those strategies seem to have worked for me.
I purchased these journals called “One Line a Day” for each of my kids. The idea is that you write a sentence about your child’s day, everyday, for 5 years. My daughter’s book is now complete, and of course I also started one for Oscar when he was born. I even journaled on November 26, 2018 when he had his first seizure.
The problem with the book “One Line a Day” is that every date has a designated page. As November 26, 2019 was approaching, I became anxious anticipating what it would feel like to read and therefore relive what had happened just a year earlier. I mentioned this anxiety to my social worker. I was concerned with how I would feel if I accidentally glanced up on the page and read my entry from the year before.
I was clearly avoiding.
By November 26, 2019 Oscar had been doing well for several months and I was scared to be reminded of how bad things had been. I wanted to move on and live in this story I had created for “public consumption”. Actually, my husband should probably take credit for creating this story. He truly believes this as his “whole truth”, that Oscar is good, better than what any neurologist could have predicted. This was the story that my husband would repeatedly tell me and that I would tell myself. But it wasn’t my “whole truth”. I was still unable to read, let alone deal with what was written on the page marked November 26, 2018.
My social worker gave me some advice… Before you read the page, make sure that you take the time to put on something comfortable, snuggle under a blanket, maybe have a hot cup of tea…anything to promote a sense of calm. She knew that reading that page may make me relive the trauma, how I “experienced the situation.” This truth I had been avoiding.
I read the page.
It is amazing how, like my patients who suffer from chronic pain, I had tuned out. I thought I was moving on because my rational brain believed that my husband’s story was my whole truth too. But it wasn’t. I was scared of what might happen if I tuned back in.
November 2018 was a lot to deal with. So was January 8, 2019, February 2019 and April 2019. By May of 2019 my mental health crashed.
I was desperate to get better so I worked hard on myself from May 2019-October 2019. I think that this is also why I thought I had “moved on” and “gotten past things” and explains why I was terrified to read that journal entry because I didn’t want to feel how I felt in May of 2019. I didn’t want my mental health to regress. I didn’t understand that this truth needed to be “accessed, befriended, and reconciled”.
In Entry Thirty Five- A Million Tiny Losses I talk about all of the small losses that I experience daily. I am sure that many of you can also relate to these losses. But there is one big loss that I failed to mention…me.
There are a million tiny losses experienced by all special needs parents and one of those losses is your sense of who you are. I am understanding this now.
In my most recent entry, “My Alias” I discuss how I use my “old me” as my alias. This is who I like to be with my acquaintances. I like to be her at school pick up. That person is worried about preparing school lunches and helping with school projects. She worries about how she will have time to juggle work, errands and household chores. She worries when her child falls and scrapes his/her knee.
That is who I used to be. That is who I like to pretend I still am because it is easier for her to fit in. One of my losses is that I can’t relate to her anymore. I can no longer relate to what it feels like to sweat the small stuff. I never realized how many generic conversations revolve around things that we are worried or concerned about. You don’t realize this until you learn that you no longer share the same concerns as other people. That you don’t feel genuine contributing to a conversation because you just can’t relate anymore. It is amazing how isolating that can feel.
I still have two Instagram accounts. I have my personal one and my @arealmomstory account. My alias loves to peruse my personal account to see what everyone did over the weekend, to look for a good recipe for dinner, or to get inspired by some social media influencer. But truthfully, I only look for a short time because even on mainstream social media I find it a struggle to fit in. I just can’t relate.
I wouldn’t say that me feeling “different” started when Oscar started having issues. I have mentioned before that I am a childhood cancer survivor. I think I have always been empathetic. I have always understood what it feels like to be different. Going to school as a 10 year old girl with a bald head will change you. I didn’t give enough weight to that until I had Oscar.
I will always be protective of Oscar’s differences because I have been there. I know what it feels like. I know what it feels like to have people stare at you but pretend that they aren’t. That is what I worry about now. I worry about protecting my kids. Both of them.
So the old me is gone. Maybe she left when I was 10? Maybe I have been pretending to “fit in” since then? I don’t know… Over the last 2 years I have allowed for this journey of personal discovery to happen. Me learning who I am now has been a difficult journey filled with grief, denial, anger, depression and I think now I am working on acceptance. I am not sure how long that will take.
It is amazing how from the outside the “old me” and the “new me” look strikingly similar, despite the essence of her being totally different.
Sharing can be scary and believe it or not, I am scared of sharing. I still prefer to hide behind my “@arealmomstory” alias. Many of my social media “friends” from my personal social media accounts are unaware of my “real mom story”. In my posts I reveal my deepest thoughts and currently I am only comfortable sharing them with close family and friends and with people who may have experienced something similar. I have shared it with people I feel safe with. People who “get me”.
For example here are two posts (obviously the same image) from my social media. The photo on the left I posted on my personal social media account and the photo on the right was shared on my @arealmomstory account.
Both of these images are of my son and I. The image on the left is the image that I feel comfortable sharing with anyone and everyone. The image on the right I am more protective of. The image on the right more accurately encapsulates me. The person who I have become. The image on the left is who I still hide behind, but the image on the right is me.
I share my story through my blog with the hopes of bringing some awareness to how tough it is raising a child with special needs. I don’t feel like I am being authentic because I am still selective with who I share it with.
I still answer “fine” when people ask how things are going. Whether things are fine or not. The truth is there is always something. Some worry. Some challenge to overcome. Some appointment. Someone I need to communicate with. There is always something. There will always be something. “Fine” is the easiest answer because it still allows me to hide.
I hide behind my alias. Which is kind of funny because my alias is actually me… or I guess I should say the old me. I still have my old me covering up my new me. I have yet to consolidate the two.
If I consolidate does that mean that I am officially not me anymore? I mean the old me? That I have officially moved on and accepted this new person who I have become. This person who worries and will always worry. This person who is afraid but has to put on a brave face. This person who struggles with anxiety. This person who is constantly overwhelmed.
I don’t want to be that person. The old me could be spontaneous, could travel, was described by her friends as “mellow”. Even if it is just through social media, it is still nice to pretend to be that person.
One of these days I will consolidate. I will drop my alias and embrace who I have become. I am just not there yet.