Entry Forty Six- Pressure

Somedays more than others I feel an extreme amount of pressure. There is so much pressure raising kids in general and even more so when your child has special needs. In regards to Olivia (my perfectly typical daughter) we ensure that she is enriched socially, cognitively, physically and emotionally.

With Oscar (my perfect neuro- atypical son), the pressure is different. Even though my goals with him are essentially the same as with Olivia (to ensure he is enriched socially, cognitively, physically and emotionally) the pressure can sometimes be too much.

When I look into the future, I expect that Olivia will excel academically and will eventually graduate high school, go to university, get a good job, move out on her own, support herself and maybe start a family of her own. When it comes to my expectations for Oscar… I don’t know what is appropriate.

My son’s diagnosis causes a spectrum of delays/disabilities ranging from mild-severe across all areas of development. I hope that he will graduate high school. But a typical high school? I don’t know. Regardless, I expect that he will need accommodations to accomplish this. Will he be appropriate for post-secondary education?… I don’t know. Will he be able to move out on his own and take care of himself and support himself?… I don’t know.

This is the pressure that my husband and I feel and I think is a common pressure amongst parents raising a child with special needs. We are dedicated to his therapies to provide him with the best opportunity to be his best version of himself. Unfortunately, we are no longer naive to the fact that he may always be limited by his diagnosis.

My husband and I are in are late 30s and are financially planning for our retirement. The other big pressure is that we are also financially planning for Oscar’s future too. I do not want Olivia to be financially burdened by her brother. If he is unable to take care of himself and when we are no longer around to help him, I would at least love for him to be financially independent (and hopefully Olivia will help him manage his finances).

I know what I can expect for Olivia’s future, I don’t have that same luxury for Oscar’s. So, we are planning for the worst, but hoping for the best. We are dedicated to his therapies (no, he can’t miss a day) and we are dedicated to creating an investment profile for him.

It is an extreme amount to pressure to feel that every moment of everyday could impact your child’s future (in my case, both of my children’s futures). But this is how I feel. And somedays, the pressure of it all can be too much and I break.

But I can’t break too long because then we have to get back to work.

Photo Taken: February 2021

Entry Forty Five- “Small Percentages”

Back in October of 2020 Oscar had tubes put in his ears in the hopes of correcting some of his conductive hearing loss.

The day of his procedure I was nervous (like any parent of any child going under a general anesthesia would be). Things had (have) been going so well and I was worried that something… anything…any shift from our “norm” could change that. Of course when the anesthesiologist came to talk to me about the procedure I burst into tears (just out of pure anxiety). And then I immediately judged myself for this reaction knowing that it was a very routine, quick procedure and that other children go through much much worse. He assured me that things would be okay.

Not long after the anesthesiologist left, Oscar’s ENT came to review the specifics of the procedure and the recovery protocol. In her opinion, there was no need to avoid exposure to water in Oscar’s ears because only 20% of children have an adverse reaction. (If your child is having this procedure done go by your ENT’s protocol!). Then she said, “but I understand that you are used to dealing with small percentages, so if you feel more comfortable you can avoid water in his ears for 6 weeks.”

Wow… she “got it”! She understood that I may perceive the world differently. She understood that I am the mother of a child who had a 1/5,000 chance of having his genetic deletion. She understood that I know that 1/5,000 is possible so of course 20/100 is possible. She understood that I may tolerate less risk. She understood that I am used to “dealing with small percentages.”

Then the judgement that I had felt towards myself following my discussion with the anesthesiologist went away because I was reminded of the fact that I am a different kind of mom. I am a mom who has dealt with small percentages with my own health and now with my child’s health. I am different and it felt really nice to have someone recognize that my needs as a mom may also be different and to accommodate those differences.

Photo Taken: February 2021

Entry Forty Four- February 10th

Everyone has special dates that stick out in their minds. For me of course those dates include birthdays and anniversaries but a new date was added to my “special dates” and that is February 10th. Feb 10, 2019 was the date of Oscar’s last seizure. I remember everything about that day.

February 10, 2019 was also the date of Olivia’s 4th birthday party. We had been in the hospital with Oscar due to seizures and I was worried that I was going to miss her party. I would have been devastated! (At that time especially, the focus was on Oscar and very little was about Olivia. I desperately wanted to make this day special for her). Fortunately, we had arrived home just in time.

We had booked a small petting zoo to come to our house. All of the kids were sitting in a circle on the basement floor fixated on the animals. I was standing next to my sister who was holding Oscar… then he had a seizure. My sister looked at me. The room was filled with other parents and children. I started timing the seizure and indicated to my sister that we should step out of the room. We quietly went upstairs until it was over and then rejoined the party. That was his last seizure.

It has been 2 years since then and there is so much to celebrate. I have mentioned in previous posts that his diagnosis of Polymicrogyria often results in uncontrolled seizures. This means that even with medication there often isn’t seizure control and many children have multiple, long seizures every day. We have been fortunate so far.

With the celebration there is also trepidation. I am always on guard waiting to see if and when the other shoe will drop. My confidence in my ability to celebrate these milestones is slowly improving as I get more experience under my belt. But I still have the fear of hope. It is hard not to be fearful of hope, especially when you have experienced the pain of having your world fall out from underneath you.

Maybe without the “high” that hope provides, the fall won’t hurt as much?

When we were discharged from the hospital on February 8th 2019, Oscar was still seizing about every 2 hours. I couldn’t understand why we were being discharged if he wasn’t “better”. And that is when we learned that he may not get “better” and that this could be him. They said that there was nothing more they could do and that we just needed to take him home and continue to love him.

Nobody would or could tell us definitively that the new medication would effectively provide seizure control. Nobody gave us hope. Nobody could tell us “things will be fine” (still no one will tell us that everything will be fine). And for many people, things aren’t fine and for some, things are far from fine. Things aren’t fine for me either. But I know that we are so incredibly fortunate to celebrate this milestone, because many won’t. Today I want to celebrate my son. I want to celebrate all of the things he has accomplished in the absence of hope from the medical community. (Although they can’t provide us with hope, we are so lucky that Oscar has the BEST care team). Keep it going buddy!

Photo Taken: January 2021

Entry Forty Three- Panic Attacks

I had never had a panic attack before Oscar. If you have never had one, I will try to explain what they feel like to me. To me, it feels like I have lost control of my body and it is a conscious challenge to regain that control. I have experienced several. The last one was almost exactly one year ago today.

One year ago I went on a girls trip. I had picked out a new book that I was going to read on the plane, Finding Chika by Mitch Albom. I decided on this book because I had read Tuesdays with Morrie also written by Mitch Albom and had really enjoyed it. (I do recommend both of these books although both of the stories are very sad.)

Finding Chika is a memoir of a young girl whose adoptive guardians try to save her from a rare, terminal brain cancer. SAD! On the plane ride to my destination I read the first half of this book.

During my time away, I was able to enjoy time with friends and just let go… it was so lovely. I was at the airport ready to return home when I learned that my return flight was delayed due to bad weather in Toronto. It was probably at this time that I started to get a little bit anxious. I start thinking that I will be arriving home later at night than originally planned and that I will also have to battle bad weather on my two hour drive home from the airport.

Once I am on the plane I start to read my book and I finish it during the flight. Thankfully, I had a window seat so I could turn away from my neighbor and hide my tears as I learn that poor little Chika dies.

I land in Toronto, gather my bags and walk to my car. As I pull out of the parking garage I see that the roads are heavily covered in snow. Nothing has been plowed. As I am slowly driving down the ramp onto the highway I see an accident. This is when the panic started.

My hands literally went rigid. I felt like I couldn’t grip the steering wheel. Where could I go? Nowhere… the shoulders were heavily covered in snow. It felt like there was no escape. The panic just started to spiral. I started doing my deep breaths. I was scared and that further escalated my panic. It felt like forever (but probably wasn’t that long) until I found a safe place to pull over and I called my husband. He spoke with me for most of the drive home.

I scheduled an “urgent” call to my social worker. I couldn’t figure out why I had had this panic attack after having such a relaxing time away. After talking it through this is what I learned:

  • I had (still am) been living in such an uptight place that once I “let go” the thought of returning became once again overwhelming…?
  • I have such a deep emotional response to any suffering child… Maybe Chika had reminded me of myself when I was a child? Maybe hearing of how her adoptive guardians fought until the very end reminded me of my current fight?
  • I am a catastrophist so of course I thought I was going to have a bad car accident like the one I had witnessed.

I do have a rescue medication for panic attacks. But the above situation reminded me of how important it is to develop good coping strategies. I was driving and I was alone in the car. It would not have been a good decision to have taken my rescue medication at that time. Instead, I spoke with my husband and did my deep breathing. I also worked through the following exercise that I learned from my social worker…

“5 Things…”
  • 5 Things you can See
  • 4 Things you can Touch
  • 3 Things you can Hear
  • 2 Things you can Smell
  • 1 Thing you can Taste

**I just feel the need to add a disclaimer that if you need help, GET HELP! The things that I am sharing have worked for me but I am NOT a professional in this field.

When I had panic attacks related to Oscar’s health I never wanted to take the rescue medication because I was worried that I wouldn’t be able to drive somewhere if I needed to. What I like about the “5 Things” and the “box breathing exercises is that I can do them anywhere at anytime. This gives me confidence that I can get myself under control. But I should also say that yes, I have taken the rescue medication. There is no stigma attached to taking medication.

I wanted to share two links in case you are interested in reading further about the exercises I shared. Take care of yourself!

“5 Things…” and Box Breathing

Entry Forty Two- I Encourage You To Write

I used to speak to my social worker weekly, then biweekly, and I now probably every other month. I still cry for varying lengths of time during every session but I do feel lighter after, like a bit of my worry is gone.

“Silence reinforces the godforsaken isolation of trauma” (Bessel Van Der Kolk)

I have found that my sessions with her will spark conversations with my husband. After all, we are going through this together. Many times I will share bits of my sessions with my parents as well. Often one conversation with my social worker turns into three conversations. Three opportunities to share my feelings. Three opportunities to break my “silence”.

I know that not everyone has the luxury of time or has the financial means to speak with a professional. I also recognize how fortunate I am to have the support network that I do and realize that many people are coping alone. So to anyone who is feeling isolated by their feelings, I suggest that you write. Everyone needs a release. Everyone needs to tell their story.

I began my blog about 9 months ago. I started by writing a letter to my daughter for her to read when she was older. I needed to release some of the mom guilt that I felt. The attention that I am able to provide my two children was (and still is) unbalanced. I needed to get that off of my chest.

Writing has become a fourth opportunity to break my “silence”.

“When you write to yourself, you don’t have to worry about other people’s judgment- you just listen to your own thoughts and let their flow take over. (Bessel Van Der Kolk)

You can write, read and reread your thoughts. Progressively your thoughts will become easier for you to bear.

In May of 2019 my nephew was celebrating his first birthday. My sister lives about an hour away. My husband had to work so I was going to drive to the birthday party alone with my kids. In past posts I have shared that I used to be TERRIFIED to drive the 5minutes to the grocery store alone with my kids. I mean a deep fear. So the thought of driving an hour seemed impossible.

I shared this fear with my social worker and she suggested that I talk about it as much as possible. She said that the more I talk about it, the less scary it will seem. I guess the idea behind her suggestion was that my irrational fear of the long drive will be at least partially replaced by more rational thoughts. And with enough repetition, I would have a reduced response to my fear. I do think that the repetitive sharing helped to lessen my fear that day.

If you can’t talk about it, write about it.

I wanted to share this journal that I found on Amazon. I just love the title, “Start Where You Are”. $21.61 found on amazon.ca.

Photo Taken from: http://www.amazon.ca

References:

The Body Keeps the Score: Brain, Mind and Body in the Healing of Trauma, Written by Bessel Van Der Kolk, M.D. $15.01 found on amazon.ca

Entry Forty One- Humbled

It is so easy for me to sit in my own worries. I am humbled as I learn of other people’s experiences.

I went to the hospital for an outpatient neurology visit last week. At this time, I truly have nothing to complain about. Oscar has been developing in a really positive trajectory and we have been fortunate that his seizures have been medically managed.

During the appointment, as we were discussing Oscar’s obvious speech delays, the neurologist reminded us that with Oscar’s diagnosis most children have moderate to severe language deficits. I think that I have been in denial out this and today this reminder hit me.

After the appointment I was sitting just outside of the clinic wallowing in my own worry. How will Oscar be able to advocate for himself when we aren’t around? How will he communicate his wants or needs?

Then I overheard a conversation…

There was a young mom pushing a stroller with a young child inside. Maybe Oscar’s age? Maybe younger? I overheard her on the phone summarizing her child’s medical appointment with her spouse. What I overheard was this… the child is on 2-3 different seizure medications, CBD oil, and has failed the keto diet. (I have learned that the keto diet for epilepsy is an extremely regimented program, not at all like the fad keto diet. Because it is so regimented, it is used only after the child doesn’t achieve seizure control with medication). Neurology is now considering a hemispherectomy (where half of the child’s brain is either totally or partly removed) in an attempt to control their seizures. And here I am worrying about speech… humbling.

I marveled at her strength. She was calm, she was collected, she expressed that this was the best thing for her child. And because of that, she seemed at ease. She has clearly been through a lot with her child (like many of you have) and has been through a lot for a long time for her to seem comforted by this news.

This mom was young, her child was young and was able to sit in a regular stroller. I watched her walk to the bank of elevators. I imagined her leaving the hospital, walking to her car or walking home and thinking that she would come across as any other mom taking her young child for a walk. If she wanted to, she could “blend in” and no one would know the news she had just received. I was hoping that people would be kind to her.

My son has a lot of challenges. But so many people have it so much worse.

I am humbled every time I sit in the neurology waiting room at The Hospital for Sick Children. I am humbled every time I peruse the various support groups that I belong to on Facebook. Sometimes I feel silly sharing my worries when other people’s worries are so much greater.

Everyone is going through something, whether they choose to share it or not. My journey with Oscar has really taught me that message.

Photo Taken: December 2020

Entry Forty- Goodbye Dr. H

The day I met our neurologist (I will refer to him as Dr. H) I have to admit that I really didn’t like him. I have shared this story before, but I met Dr. H after being transferred by ambulance and then admitted to the Hospital for Sick Children in November 2018.

Life had been “normal” up until Dr. H informed me of my son’s polymicrogyria diagnosis. The night we arrived he told me that his condition was very “worrisome” and that he would be able to tell me more the next day. Right away I didn’t like him… (Or was it that I didn’t like what he told me? Or was it that I didn’t like how he said it?)

Since then, I have come to like Dr. H. I have gotten used to his matter-of-fact method of communication. I have appreciated how he answers all of my questions and how he doesn’t seem irritated when I ask for clarity. Most of all, I appreciate how well he has medically managed my son since the beginning.

Today we said goodbye. Dr. H is moving on to another hospital. It was emotional saying goodbye to him. For better or worse he has been there with us since the beginning. He knows my son very well…Now I am going to have to meet and entrust a new doctor with the care of my child. I will have to hope that they will take the time to get to know my son as well as Dr. H got to know my son.

I cried as I said “goodbye” to Dr. H. He seemed surprised by my reaction. I am wondering if perhaps he underestimated the connection or attachment that a parent develops with their child’s medical care team? They become your security blanket. You trust them because not only are they very knowledgeable in their field, but also they know your child. They know their past. They know their developmental trajectory. They are the best predictors of their future.

This is the first time that there has been a shift with Oscar’s care team. I am sure this will happen many times in the future.

So anyways, today we said goodbye.

Photo Taken: January 2021

Entry Thirty Nine- Start Where You Are

“Start where you are. Use what you have. Do what you can.” – Arthur Ashe

Nobody starts off in the same place. And nobody finishes at the same destination.

My son has a genetic deletion meaning that he is missing genetic information. He didn’t get to start his little life at the same place as my neuro-typical daughter. He started behind. We were fortunate to learn of my son’s diagnosis when he was only 4 months old because it allowed us access to the early intervention program at a young age.

The spectrum of potential abilities possible amongst children with my son’s genetic diagnosis is amazing. To me, the logical explanation for this spectrum would be the varied amount of missing genetic material. Doesn’t is seem logical that children with a greater amount of missing material would be more affected? One article (1 of 2 articles that the genetic doctor provided us) stated that the size of the genetic deletion (the amount of missing material) doesn’t necessarily correlate with the child’s abilities.

WHY????? Is what I want to know. If your child’s prognosis can’t be predicted by the amount of missing genetic material then what is the predictor? What is making the difference? That is what I want to know… because that is how I can help my son.

My son started physiotherapy and occupational therapy at about 9 weeks old. He received his hearing aids at 4 months old and started speech therapy shortly after. He had access to a dietician and a naturopath around 4-6months old as well. We also took advantage of bi-weekly private sessions with a deaf and hard of hearing teacher starting at 5months old…My point is that we started where we were, we are using what we have, and we are doing what we can.

To say that we were overwhelmed with the number of services made available to us is an understatement. But I couldn’t say “no”. How could I say “no”? I needed to “use what we have”, to take advantage of any opportunity made available to my son.

I am aware that not everyone has the luxury of doing this. In Canada we receive a paid maternity leave for up to 18months. I took advantage of that opportunity. I know that there are many mothers/parents who return to full-time work after only 12weeks of leave. This would make it extremely challenging if not impossible to take advantage of all possible opportunities. Do what you can.

There are so many factors that may limit your ability to say “yes” to all available opportunities for your child. If you are a single mother. If you have more than one child. If you have a limited support network. If you live far away from extended family. There may be financial limitations as well. All of those things can really alter your ability to take advantage of opportunities.

“Use what you have. Do what you can.”

In many ways I feel very fortunate. I have the luxury of time. I have the luxury of an amazing support network. I have the luxury of living close to one of the world’s leading pediatric hospitals. I have the luxury of a provincial healthcare plan that covers the majority of our medical expenses, therapies and other expenses associated with my son.

I think that is why I have felt compelled to share. I want to share therapy ideas. I want to share products and toys that are helping my son. I want to share my mental health journey and conversations that I have with my social worker because maybe they will help you too.

I am definitely NOT an expert at raising a child with special needs. I am new to this, maybe like most of you? I have NO idea what I am doing or if I am doing the right thing. I am simply collecting information from all of these experts around me, using my critical thinking skills and applying those things to my son. I am sharing because I hope to help someone who may not have the same access to services as we have.

“Start where you are. Use what you have. Do what you can.” – Arthur Ashe

Photo Taken: January 2021

Entry Thirty Eight- My “Special” Bond

I think that I now understand why parents of children who have special needs have a special bond with that child. At least I have come to understand my bond with Oscar.

When I say that I have a special bond with Oscar, I should say that I have a very special bond with both of my kids, but the bond is different. This is probably the same for any parent who has more than one child.

My bond with Olivia (my neuro-typical child) is special. She is my little baking buddy and my crafty companion. I am protective of her, particularly of her feelings. There have been many occasions when I have left her with family or friends so that I could take care of something with Oscar. There have been MANY appointments where I have watched her sit patiently on the sidelines. And there have been several times where she has woken up in the morning to find me not there. I never want her to feel abandoned or excluded but despite my best efforts, I worry that she has.

She says “wait for me” a lot. I am not sure if she is saying this line just because… or if she is saying it because somewhere in her little 5 year old subconscious she feels like she has been left behind? Either way, I will always wait for her and I do verbally remind her of that.

We ask a lot of her, now that she is 5 years old (almost 6). She will clear her plate from the table, she will clean up her toys (when asked), she will start pouring water into the bathtub, and she feeds Suma (our dog). These are just some of her little “jobs” that she helps us with. Sometimes she does ask for help. I always tell her that I am always here to help her whenever she needs it. I think it is important for her to hear that.

And then we have Oscar, my special little boy. Recently, I have been thinking a lot about my need to “let go”. Oscar was scheduled to start daycare in March of 2020, but because of COVID the daycare is currently unable to take any new children. Part of me is relieved that he isn’t in daycare; one reason being COVID, the other being that I don’t have to let go just yet.

The rational side of my brain knows that daycare would be good for him. It would expose him to other children, a new environment and new experiences. (Especially now that he has learned the idea of mimicry). The emotional side of my brain doesn’t want to let go.

Oscar and I have been through a lot together, even though he was just a baby when most of the scary stuff happened. I imagine it similar to how people feel bonded after surviving a natural disaster together or any other traumatic event. You remember the trauma of the event and you remember who experienced it with you. In my case the “who” is my child.

I also have a very clear memory of all of the help and support we received during those times. Obviously my husband was present for a lot of it and was a HUGE support. My parents left a vacation early to be with us, my sister took my daughter for a few days, my aunt was my on-call medical professional, my cousin who sat in the hospital room with me until my husband arrived, my friend who spent the night on our couch so that my husband could come to the ER with us. Other friends near and far who checked in, dropped of meals or flowers were all such HUGE supports. I will truly never forget it.

I don’t want to seem as though I am minimizing the involvement of our huge support system because we are so incredibly lucky to have them. But many emergency room visits I did alone, and the ambulance rides I took alone with my son. It was just him and I who shared those experiences. And that is why we have a different kind of bond.

So when people (coming from a good place of course) encourage me to “let go” I think they understand that it may be more difficult with Oscar. It is different to “let go” of a child who has had medical complexities vs a child who hasn’t. I know that they are coming from a good place. I know that they are saying it because they can see that Oscar is ready for the next challenge. I know that Oscar is ready too, I am just not sure that I am.

Photo Taken: December 2020

Entry Thirty Seven- A Beautiful Story

In April of 2019 my son was taken via ambulance to the closest pediatric hospital because he was having difficulty breathing. He was 6 months old at that time.

It felt like things were spiraling out of control that day. I remember that I had taken him to the walk-in clinic because he seemed to be breathing quite quickly. The doctor barely took the time to introduce herself before sending us straight to the closest emergency room. We arrived at the ER and after Oscar was examined, the ER doctor facilitated our transport to the closest pediatric hospital. We were sent directly there via ambulance accompanied by a nurse and a respiratory therapist.

When we arrived, we were escorted to the pediatric wing and directly into a room. Instantly the pediatrician and two nurses were there to start his assessment and get him set up on the appropriate monitoring devices. They quickly decided to put us in a different room. They moved us down the hall to a large room with huge windows right in front of the nurses station. I started to freak out. How did things escalate from a walk-in clinic visit to now being admitted to the hospital and placed in a room where Oscar could be optimally monitored? Oscar was also put on a high flow machine (non-invasive ventilator). It is different from just being on oxygen because it pushes air into your lungs, so that breathing becomes easier. Things had spiraled.

I am sure many of you have had those days where you wake up and the day turns out to be totally different from what you had planned. This was one of those days for me.

I was really scared. By this time we had known about Oscar’s brain abnormality (polymicrogyria) for 4 months and his genetic deletion (1P36 Deletion Syndrome) for 2months. I was still grieving those things when this happened. As I was sitting in the hospital I was looking through the 1P36 Deletion Syndrome Support Group Facebook page and I happened to come across the most beautifully written story. This story was titled “Grieving the Future I Imagined for my Daughter” written by a fellow mother of a child with 1P36 Deletion Syndrome. It was published in “The Atlantic” (an American magazine).


“Without crumbly, unreliable hope, what else is there? There’s my child, no less alive or human than any other, and with abilities and inabilities much different than I imagined. And realism, which I’ll use to reassemble a positive, long-term picture of what her life could be. Izzy’s diagnosis wiped my canvas clean. But while the expanse of whiteness is unsettling, it is also temporary. Soon there will be lines, contours, shading—a new and beautiful composition. I will not accept less.” Written by Julie Kim


I remember reading this in the hospital room with my son unable to successfully breathe on his own and just crying and crying. This was exactly how I felt. But at that time the page was white. And the whiteness was very “unsettling”. Now, a year and a half later the page has started to fill in with “lines, contours and shading”. I will always remember how it felt when that page was white.

I will never forget where I was and how I felt when I read Julie Kim’s story. She had put into words what I was feeling even though I didn’t yet understand my own feelings. I was so grateful for her words, especially on that day.

I wanted to share the link to Julie Kim’s full story because it really is a beautiful read about grief (if there could be such a thing).

“Grieving the Future I Imagined for My Daughter” by Julie Kim

Photo Taken: December 2020