When my daughter was born I bought a book called, “One Line A Day.” It is a five year memory book and the intention of the book is to write one sentence daily. Every day for 5 years I wrote a sentence about my daughter. Things we did, funny things she said and all of her milestones…it is all documented in this little book. I now have a book full of everyday, regular moments of my daughter. This little book is one of my most prized possessions.
When I was pregnant with Oscar, I bought the same book for him.
My first entry was on October 6, 2018, the day he was born.
But I struggled breast feeding, I was saw a lactation consultant several times over the first few weeks and Oscar had regular weight checks with our doctor as well. I was exhausted and stressed, but I still wrote. Then he started having seizures, we later learned of his diagnosis and our days continued to be filled with appointments.
So that is what I wrote about, because that is all we were doing back then.
What a strange memory book.
I did write in it daily. At least for a little while. Eventually the appointments started to spread out and I became aware of how difficult it was to find something to write about. So when I would reflect on that day and what Oscar had done or accomplished it was a struggle to come up with even one sentence. This was really disheartening. So I stopped writing in his book. In fact I didn’t write in his book for almost a year.
What was I supposed to write?
That we went to an appointment that day? That you struggle to eat? That we did your home therapy with the same goals? That you are still really quiet?
What was I supposed to say?
It was a struggle. It hurt. So I stopped.
Then of course I felt guilty because Olivia has this book filled with all of her childhood memories and Oscar doesn’t.
Over the last couple of months I have noticed that Oscar does something new almost everyday. He now can drink from a proper straw… that is something I could write in my book. He points at himself when we say “Oscar”… there is another thing I could write. He now climbs stairs, plays with cars, and tries to jump. He loves books, “Happy Birthday” seems to be his new favorite song, and he loves to create his own “music” too. What he is able to do is very different from other three year olds, but nonetheless worthy of documentation.
Has his learning curve just rapidly progressed? Or is it that I have just improved my ability to notice all of his abilities?
Either way, on his third birthday I decided to put his book back on my nightstand and I set a pen beside it.
This time last year Oscar was pulling up to stand, standing independently at a horizontal surface and was working on transitioning between surfaces. I remember asking Oscar’s physiotherapist when she thought Oscar would be walking independently? She said that most kids who have difficulties with motor planning typically are not walking until they are school age.
This totally surprised me. He was standing so well! Then I secretly convinced myself that he would be walking by his third birthday. After all, that was a whole year away.
Well here it is… Oscar Is THREE!!!! He is not walking in the traditional sense, but he is capable of taking up to 5-6 steps independently with the aid of his SPIO (Stabilizing Pressure Input Orthosis) and his SMOs (Supramalleolar Orthosis). I am learning that walking is walking and not every ambulatory child walks the same.
I am aware that I mentioned his birthday and then quickly jumped to associating his birthday with a major motor milestone. Most children achieve this milestone before 14months of age without any intervention… they just figure it out. Oscar is different. We have been working on walking for a looooonnnggg time. It has been a lot of work and a lot of dedication. But his ability to walk or talk or accomplish any milestone for that matter doesn’t define him. He is not his abilities. He has the sweetest little soul that shines through in his smile. He is learning something everyday however small and insignificant it may seem. I am so proud of him.
He doesn’t know that today is his birthday, but I do. I will never forget being at The Hospital for Sick Children when he was 7 1/2 weeks old and I was told that he may not make it. I will never take this day for granted. I will always celebrate.
What three is for Oscar…
He enjoys books, flipping the pages on his own and patting the pictures.
He enjoys swinging and sliding at the park.
He loves petting our dog, Suma (and feeding her from the table).
He laughs when any dog barks.
He is very tactile and loves touching the carpet and admiring the seam in our ottoman or on our couch.
He loves cars, rolling them on the floor and then crawling after them. As soon as I think that the “yellow one” is his favorite then it is the “red one” or the “white truck”.
He loves listening to music and making his own music.
He laughs when he hears Donald Duck’s voice.
Bath-time is one of his favorite times of the day. Everybody gets wet!
He is learning to scribble on paper.
His favorite foods are pancakes, mango, avocado, macaroni and cheese (with veggies of course) fish and CHEESE!
That is not all of him of course.
Happy birthday to the sweetest soul I know. I hope that you know how special you are to all of us lucky enough to know you.
Being totally transparent, I went back on anxiety medication.
I slowly realized that I was no longer feeling like myself and that I wanted to feel better. I don’t feel stigmatized by having to take medication, but maybe subconsciously I had prided myself on being able to manage my anxiety with exercise, writing, and therapy alone. My pride had to go.
I think for me everything just compounded. My husband’s work schedule is very busy especially in the summer, which means that most of the time I am juggling 2 kids on my own, each with their own set of needs. Oscar’s waves of feeding struggles, introducing new methods of consuming water, home therapies, and appointments is all on me most of the time. That’s just how it has to be, my husband has to work. I can’t underestimate the effect that COVID and lock downs have had as well.
We had booked Olivia in for 2 camp weeks over the summer. I was so excited for her to go to camp and get some social interaction and I was also looking forward to having some “me time” that week while Oscar napped. The first day Olivia was at camp Oscar would NOT sleep. I didn’t have the flexibility of letting him fall asleep and wake up whenever because I had to go and pick up Olivia at a certain time. So I lay with him for quite awhile. He still wouldn’t sleep. I thought that maybe I would give him a break, leave his room and come back in a few minutes to try again.
The next thing I knew I was literally on the floor of my closet crying. My long anticipated moment of “me time” was now consumed with struggling to put Oscar to sleep. I had totally underestimated how much I had needed that time to myself until it was taken away. And I cried.
That was probably the lowest I had felt in a while. That is when I knew I needed to go back on medication.
I scheduled an appointment with my doctor. She reinforced what I had been feeling but had been unable to label… “Chronic Stress” was the label. There is always something. There will always be something. That is how it is when raising a child with special needs. That is being a “medical mama”. That is just my life now. That is what makes it “Chronic Stress”. So she agreed that I should go back on medication.
My doctor also reinforced the need for self care. I need to create time for myself. Finding time to myself has been a struggle. Or I have made it more of a struggle than it needs to be. We don’t have child care for Oscar and to say that I am actively looking for it would be a lie. He is on a waitlist for daycare which has been delayed by COVID, but that is as far as we have gotten.
I have been back on my medication for close to a month now and I feel better. I feel more like myself. I feel like I have more space. I feel like my window of tolerance is larger. As far as the “me time” piece I have decided to get back into setting my alarm early so that I am awake for an hour before the kids get up. Baby steps…
Many years ago I remember watching a youtube video of a father who had taken his autistic son to see a Coldplay concert and while this song was being performed, this little boy cried. It moved me. It made me realize how impactful music can be.
Years later, we learned of Oscar’s diagnosis. My initial instinct was to “fix him”. We dove into all therapies, both modern and natural medicine, and I also began researching stem cell technology. We had had cord blood taken and stored for both of our kids when they were born. My research taught me two things 1- Oscar is too young (at that time he was just a couple of months old) for any stem cell therapy and 2- His stem cells also have the genetic deletion so they would be useless.
I can’t “fix him”.
“Fix You” by Coldplay was on my running playlist and I would run, listening to this song and just cry. (Wearing sunglasses of course).
My uncle introduced me to a podcast called “Unlocking Bryson’s Brain” and Episode 6 is titled “The Ethics of Cure”. During this episode, Bryson’s father discusses the ethics of finding a cure and wondered if by finding a cure it suggested that there was something wrong with his son? I had never thought about it that way.
Of course my instinct was to “fix” Oscar, to make him as “typical as possible”. I would fix his epilepsy. I would cure that in a heartbeat if I could. But the truth is, the rest of him is perfect. He does have his challenges. He is very delayed. He is nonverbal and struggles with communication. But he is the sweetest little boy who doesn’t need to be “fixed”. He needs to be supported, accommodated and loved.
I have thought about that pediatric neurologist a lot since we left her office that day. I have thought about why she would have selected that particular field of medicine given her seemingly lack of compassion or consideration for her patients and their families. (For Reference see Entry Fifty Nine- Feeling Acknowledged). It didn’t make sense to me.
A couple of weeks ago we went to The Hospital for Sick Children for an ophthalmology follow up. It is a teaching hospital so it is very common that your child is first assessed by a medical student, resident or fellow prior to seeing the staff doctor. Oscar was assessed by a very engaging fellow (clearly he enjoyed working with children) and following his assessment he went and consulted with the staff ophthalmologist before they both returned to the room.
I did overhear their conversation. There was a brief discussion about Oscar’s eyes before their conversation became focused on his genetic and neurologic diagnoses. I understood. It is a teaching hospital and my son has two relatively rare diagnoses. But this conversation stood out to me. It didn’t make me upset, it just stood out and I couldn’t understand why.
I spoke to my social worker about having overheard this conversation. I explained that I wasn’t offended by it, I wasn’t upset by it, but I was very aware of it.
This was her thought… “Is it because your son was interesting to them? Typically when you overhear someone talking about a child it is ‘oh look at their sweet hat’ or ‘watch them run’. It is more in the sentiment of referencing a child as a child. Maybe this stood out to you because your son wasn’t being referenced as a child but as a diagnosis that was interesting?”
I think that was it.
It was the first time I had overheard my child referenced as anything other than a child. Other than my son. It wasn’t bad, I was just aware of it.
And then I thought about that pediatric neurologist and it suddenly made sense to me why she entered that field of medicine. I am sure she does care about her patients, I don’t want to seem that callous, but I think she finds them interesting. I think her interest in neurologic diagnoses trumps her ability to see her patients as children, as members of a family and of a community. She is blinded by her interest in the inner workings of the human brain.
What she didn’t seem to understand was that in order to help my son (and other children like him), she needed to see all of him. She needed to look beyond his diagnoses.
Haven’t other people felt that? Have other people felt that their child wasn’t seen? Have other people been told that their child will never accomplish something based solely on their diagnosis or what an imaging report states? What they have sorely underestimated is the power of tenacity. The power of a parent willing to sacrifice for their child. The power of family, of community, of exposure to experience. The power that a million little things can make a difference. I am not sure if those things are written in a textbook.
I do want to say that this was not the case of the fellow at the Hospital for Sick Children. I knew that he saw my son as a child and was just wanting to learn about his diagnoses.
I am his mom and probably a little biased, but he is cute, right? He has the most beautiful blue eyes and his sweet little smile can truly light up a room.
It isn’t only me who thinks so…“He is so sweet I could work with him all day” our physiotherapist has told me. “I just love working with Oscar” says our a occupational therapist. I believe that they genuinely enjoy working with Oscar. I mean, who wouldn’t, he is really cute.
But what happens to him when he is no longer “cute”?
What happens then?
What happens when this cute little boy grows up into an older child. Will people still be as excited to work with him? Will they still be as accepting?
And then when that older child grows up and becomes a young adult…
What happens then?
Will people still be as eager to help him? Will they help him at all? Will they continue to be compassionate and accepting?
What happens to him when he is no longer “cute”?
I don’t know.
Thankfully most babies grow up. Most babies will become a toddler who then become a child. And that child will eventually grow up and become an adult. Is the world as kind to that adult? That adult was once a cute little toddler who everyone was so willing to help, but now they have outgrown their “cuteness”.
There is a grocery store chain who employs special needs adults to clean up and organize their shopping carts. Do customers greet them upon entering the store? Do people acknowledge that they are there? Or have they become invisible?
Fast forward 20 years and that could be my cute little boy. There is nothing more that I would wish for my son (both of my kids) than for him to feel like he has a purpose in his day, whatever that purpose may be. I hope my son is able to have a job, regardless of how simple the job may seem. I hope that people greet him. I hope that people will look him in the eye and acknowledge that he is there. That he is a person too.
I hope that he doesn’t become invisible when he is no longer “cute”.
I can’t help but think of that woman I saw on the beach… The woman who was wearing the large sunhat that covered her perfectly bald head. (Entry Fifty Six- Acknowledgement)
I had a therapy appointment a couple of weeks ago and I mentioned that interaction to my social worker. I became just as emotional talking about it then as I had when I saw her on the beach that day.
Why did this affect me so deeply?
I initially thought the connection was because I was a cancer survivor and now I am seeing someone who is in the throes of it.
But as I thought about it more this didn’t make a lot of sense. I was a child at the time of my diagnosis. She is a woman. She has a husband and children to worry about. I didn’t have those worries when I was sick. I didn’t have to worry about what would happen to my children should something happen to me…
That was it.
It took me several weeks to figure it out, but that was the connection.
We both share the same unspoken worry… Who will talk care of our children if/when we are no longer around?
It is assumed that as a child grows, they will progressively become independent. “Leave the nest” as they say. Some parents are gone before this can happen. Some parents don’t have that privilege. This may be the case for the aforementioned woman. Some children are never ready to “leave the nest.” This may be the case for me.
So then what happens?
What happens when the parents are gone but their children aren’t independent?
There is no choice but to delegate the care of your child to someone else. And you have to trust that they will care for your child. Be kind to your child. Feed, clean and clothe your child. Love your child? Knowing that they will never do it like how you would have done it, but you hope that it is good enough.
The weight of this worry is heavy.
I never would have thought that someone diagnosed with cancer and a special needs mom would have that in common. But it is true. What greater worry does any mother (or parent) have other than the well-being of their children, especially when they are no longer around.
The truth is I am not sure if she thinks of me. But I have thought of her often since that day. She doesn’t know my struggles with Oscar. I didn’t share that with her. The timing wasn’t appropriate. She doesn’t know that we may have more in common than meets the eye.
I am not sure if I shared that Oscar was discharged from neurology at The Hospital for Sick Children and referred to a community pediatric neurologist. Although it was (is) tough leaving the security blanket of the Children’s Hospital, it is great news that Oscar is currently not as “worrisome” to neurology as he once was.
I wanted to share my experience at our initial visit to the outpatient pediatric neurologist…
The office is about an hour and a half from our home. No big deal, we are used to commuting for medical appointments. We had driven about 45mins when we received a call from the office that the neurologist had been taken to the emergency room herself and that we will be re-scheduled once they learn more. Of course my reaction was nothing but concern for the doctor and we returned home.
We waited to be re-scheduled…
I received a call on a Wednesday that the appointment had been rescheduled for the following day at 11:15am. I mentioned that we had a previously scheduled audiology appointment at 9:00am in a different city and asked if it was possible to move the appointment to a later time? No, that was the only option… so okay, we took it.
Our audiologist was great and worked quickly through our appointment so that we could make our neurology appointment on time.
We arrived to the appointment early and as instructed we waited outside the clinic until 1 minute prior to our appointment time before entering the building. We took the elevator up to the 4th floor and as I was about to enter the office I noticed a large “No Stroller” sign stuck to the door. This wasn’t the first time I had seen a sign prohibiting strollers. But this particular sign caught me off guard… isn’t this a pediatric neurology clinic?? Wouldn’t there be many children attending this clinic who have delayed gross motor skills or who are non-ambulatory?? No strollers??
We waited 45minutes in the waiting room before the neurologist came to get us. Honestly this was not a big deal, we are used to waiting. But, they knew that we had rushed from another appointment in a different city, it would have been nice for them to let us know that coming a bit later would have been okay.
Every epilepsy parent knows how specific medication dosing is to body weight, so I was surprised that she had a mechanical beam scale versus a digital scale to take Oscar’s weight. Oscar doesn’t stand independently, so she instructed me to weigh myself and then weigh myself carrying Oscar and she took the difference as Oscar’s body weight. It didn’t seem to be the most accurate method…
He was weighed 4 days later on a proper scale by his pediatrician and was 1.2kg heavier!! Our pediatrician re-dosed (or properly dosed) his medication.
As she was doing her exam she commented on his ‘heart murmur”. We do know that Oscar has a small VSD (Ventricular Septal Defect) that was not concerning, and we do follow up with cardiology annually. It almost felt as though she said it just to say it.
Funny enough, 4 days later our pediatrician didn’t hear the VSD and reported that it must have closed. Our pediatrician has been with Oscar since he was 7 1/2 weeks old. There is a substantial amount of trust there. So I am not sure if she actually heard a murmur or if she just read “VSD” in his history and wanted to comment on it?
She also commented on his “scoliosis”. As a physiotherapist, it surprised me that she made this comment while Oscar was sitting asymmetrically with one knee bent in (this should be assessed in standing and then with forward bending). But as a mom, of course I was concerned. She is a neurologist after all… She should know better than me.
We had a 1 1/2 hour drive home so I went to use the washroom which was in the main hallway of the office building. The washroom was smaller than my powder room. The stroller wouldn’t fit (yes, I brought my stroller anyways despite the sign). And of course a wheelchair wouldn’t fit…. How could a neurologist choose this office space knowing that many of her patients would be non-ambulatory and would be reliant on a stroller, wheelchair or some other assistive device? Of course I wasn’t going to leave Oscar unattended in the hallway of the building. So I didn’t use the washroom.
I was so upset leaving this appointment.
This is a doctor who specializes in treating children with neurological conditions. How could she not consider her patients when selecting her office space? How could she not accommodate them? I was sympathetic and accommodated her and her medical needs… How come she couldn’t do that for my son?
This situation really upset me because this place, of all places should “understand” my son and other children like him and yet there were no accommodations. If this place won’t accommodate my son…. What about the rest of the community? … The rest of society? It opened my eyes to a much bigger issue. And it felt like such a big slap in the face.
It came down to acknowledgement. Acknowledge my son. Acknowledge his needs. Acknowledge the complexity of his medical diagnosis. Acknowledge how this impacts not only my son, but his family too. And she didn’t. The one person who is supposed to “take care of him” didn’t consider him.
My son deserves better than what she was willing to offer. I won’t take him back there.
“Leave the safe, explore the new, return to the safe…” (What Happened To You? By Bruce D. Perry and Oprah Winfrey)
About two years ago I started therapy. I was a mess. I can still remember my mom telling me that I looked like I was on the verge of tears all of the time. She was right. I was.
I was afraid to sleep. I was afraid to leave the house. I was afraid to be alone with my kids. Some of my fears were rational, but I understand now that many were not.
My husband, my parents and my therapist really encouraged my return to some level of normalcy. If it weren’t for them, I would still be allowing my fears to have total control over how I live. I still have a lot of fears, some of them are valid and some of them are not. I am learning how to limit their control over me.
Not in these exact words, but I was encouraged to “Leave the safe, explore the new, return to the safe.” (What Happened To You? By Bruce D. Perry and Oprah Winfrey)
The excerpt above refers to how children build resilience by challenging their stress-response capabilities through practice and exposure to various challenges. I think that this principle can also be applied to anyone at any age who is struggling with anxiety or healing from trauma.
It definitely resonates with me. “a Goldilocks situation”… A challenge too big and I wouldn’t even attempt it… I would give up due to its perceived impossibility. Reflecting back, over the last two years I have exposed myself (with encouragement from my husband, parents and therapist) to small to moderate “doses of stress” and I do think that this has helped to build my resilience.
“With a safe and stable relational foundation…” What if you don’t have something safe to return to? What if you don’t have a safe and stable relationship to rely on? Maybe the exposure to stress has to be significantly less to still challenge the stress-response system without overwhelming it? I can’t imagine how difficult it would be to live with anxiety or to heal from a traumatic life experience alone. I know that a lot of people do.
I am still not where I want to be…. but who is? It is a journey, and along this journey I will continue to work on building my resilience.
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.