Entry Thirty Six- Divorce…

Divorce, obviously a very sensitive subject. I have never thought about divorce. No one in my entire family is divorced. It is something that I am unfamiliar with. So why did I decide to talk about it? Because I learned that the divorce rate amongst couples raising a child with special needs is 70%!!

Raising children in general can be stressful on a relationship, raising children with special needs and with medical complexities is even more so. I feel like this is a fair statement since I know what it feels like to raise a “typical child” prior to having my special little boy. I can’t speak for other relationships, but I will speak briefly on mine.

My husband and I started dating in 2003 (17 years ago) and have been married for 8 of those years. We have a solid history together. We know each other very well. I honestly can’t say if my husband has “changed” or not with everything that has happened with Oscar, but I know that I have. I do have to credit my husband because although he hasn’t “changed” I think that he has had to adapt in order to accommodate how I have changed.

If I were to describe how I “used to be” I would say that I used to be adaptable, easy going, adventurous (to a degree), and I loved to travel. I have now become this person who is structured and routine-based. (In my defense this isn’t only because my anxiety is better managed with a routine, but I also have a lot more to accomplish). My window of tolerance has shrunk dramatically (things irritate me now that didn’t used to). And I do prefer to be close to home in my “safe zone” where I know I am within a few minutes of the hospital should I need it. Essentially I do best living my “typical day” within my “safe zone”.

My husband on the other hand is not routine based (but maybe most dads aren’t?). For example I know that Oscar gets really tired around noon, so if he isn’t eating lunch by 11:30am he may not eat a great meal. My husband would say that the only schedule we HAVE to adhere to is Oscar’s medication schedule (7:30am/7:30pm) anything in between those times can be flexible.

The “old me” would have felt the same way. The “new me” likes to stick to routine. So my husband has adapted to the “new me” and follows my recommended daily schedule. And in turn, I try to not get flustered if the daily routine changes (which does happen primarily on longer appointment days). My husband has had to adapt to my new routine-based lifestyle. He has learned that I do better with advanced notice if there is going to be a change to my “typical day” within my “safe zone”.

We bicker. My fuse is shorter. You “take things out” on people who you are closest with and I know that my husband absorbs a lot of that. I have come to realize that I NEED time to myself to be a better mom and a better wife. I know that sometimes it feels like there is no time for self care, but it is important. That is why my husband and I came up with a routine where he gets 3 mornings/week to go to the gym and I get 3 mornings/week to go for a run/walk/gym whatever I want. (When I say “morning” I should say early morning for an hour 7-8am).

During COVID we implemented Thursday night “date night at home”. We have been doing this every Thursday night for the last couple of months. After the kids go to bed, my husband will run out and pick up take-out from one of our favourite restaurants. It allows both of us to enjoy a meal and adult conversation without the distraction of also feeding kids.

Learning that the divorce rate is as high as 70% amongst parents of special needs children made me realize that I need to make sure that I am putting effort into my marriage. Some days can be long, and after the kids go to bed sometimes I just am too tired to think of anyone or anything else. I need to make sure that I save some energy for our marriage too because my husband is important.

Photo Taken: December 2020

Christmas Gift Guide for Olivia (Typically Developing 6 year old)

My daughter already has one of these. She loves the little bracelet and storing it in the fortune cookie.

Fortune Cookie Bracelet $6.78

Olivia is obsessed with connect the dots.

Connect the Dot $7.84 (on amazon.ca, image also taken from amazon.ca)

She did a couple of “youtube learn to draw videos”, instead of her staring at a screen, I thought that this would be a nice alternative.

How to Draw 101 Animals $6.92 (on amazon, image also taken from amazon.ca)

My daughter has been fortunate to have gone to see The Nutcracker the last couple of years with her grandparents. Because she was unable to go to the theatre this year, I though I would get her the book.

The Nutcracker $23.75 (on amazon, image also taken from amazon.ca)

Everyone can use a new puzzle during the winter months. Maybe this will teach her some geography too!

Canada Puzzle $26.37 (on amazon, image also taken from amazon.ca)

Olivia mentioned this as 1/2 things she wanted for Christmas. (The other thing being a “hard snowflake”)

Barbie Car $29.99 (on amazon, image also taken from amazon.ca)

Lego has become so expensive!!! Olivia does like Lego Friends, so we hope that she is excited about this set.

Lego Friend $99.99 (on amazon, image also taken from amazon.ca)

Christmas 2020 Gift Guide for Oscar (26months old, developmentally probably 12-16months old)

These are real images (which I am learning is easier for the brain to process vs. cartoon images). I was planning on taping these to the wall. Hopefully he becomes inquisitive!

50 First Words Flashcards: Scholastic $5.50 on amazon.ca (Image taken from amazon.ca)

Hopefully encourages some fine motor skills? At least I won’t lose the shapes! Fat Brain Toys have such good reviews so I am hoping that this is a good choice.

Fat Brain Toys Oombee Cube $26.99 on amazon.ca (Image taken from amazon.ca)

Oscar really enjoyed playing with these at the Community Center. He would roll them away and then crawl to them or put them in his mouth.

Infantino Textured Multi Ball Set $14.99 on amazon.ca (Image taken from amazon.ca)

Oscar loves anything that spins. This toy is also made from 100% recycled plastic and is packaged with recycled materials. If this is a hit I may also buy him the cement mixer.

Green Toys Helicopter $21.62 on amazon.ca (Image also taken from amazon.ca)

I am not sure if this will be too advanced for him right now, but at least it will be a toy that he can grow into. I wanted a vestibular toy (providing sensory input through movement) that we could use inside during the winter. My daughter may like it as well.

Little Tykes Trampoline $77.99 on amazon.ca (Image taken from amazon.ca)

I also wanted to share some toys that he already has and LOVES

Oscar is motivated by toys that spin. These are intended to be bath toys, but I also have put them on our glass sliding door to encourage play in an upright standing position (vs. flexed over the ottoman or coffee table).

Boon Cogs Water Gears $11.99 on amazon.ca (Image taken from amazon.ca)

Another spin toy that he loves. It makes animal or letter sounds depending on the setting. Great for encouraging practice of speech sounds! Currently his favorite motivational toy for physiotherapy.

LeapFrog Spin and Sing Alphabet Zoo $19.94 on amazon.ca (Image taken from amazon.ca)

This little dog toy has the sweetest voice! You can program it to say your child’s name and several of their favorite things and he will incorporate those into songs and games.

LeapFrog My Pal Scout $24.99 on amazon.ca (Image also taken from amazon.ca)

This has become another one of Oscar’s favorite motivational toys for physiotherapy. The legs are a bit too low for him so I will just place the tray part on a higher surface.

VTech Magic Star Learning Table $89.97 on amazon.ca (Image also taken from amazon.ca)

Oscar has had this toy since he was 3months old and we still use it today. This is by far the toy that we have gotten the most mileage out of. I highly recommend it!

Baby Einstein Glow and Discover Light Bar (I was trying to show all items that could be purchased in time for Christmas by shopping on amazon prime, this toy is $23.97 at Babies R Us and is showing $69 on amazon!)

Great budget friendly option and hours of entertainment! Fill a large, shallow bin with pasta, rice, or dried beans.***supervised play to avoid choking. You can put it on a coffee table or if your child doesn’t stand, they can play with this in sitting. Add some beach toys or kitchen utensils and tupperwares. My son LOVES this!

Entry Thirty Five- A Million Tiny Losses

I can’t take credit for the title. Someone in one of the online support groups that I peruse used “a million tiny losses” to describe what grief feels like to a parent of a special needs child. I thought that it was a perfect descriptor.

Grief is the “response to loss”(wikipedia)…”a deep and poignant distress” (merriam-webster). After I learned of Oscar’s diagnosis I would definitely describe what I felt as a deep distress. At that time, I didn’t know that I was grieving. Nobody had died. I had my son. I thought it was extreme anxiety so when I went to see my family doctor I was prepared to finally admit to needing help. On my way there I felt a sense of relief because I knew that she would prescribe me medication and it would take my pain away… it would relieve me from this unbelievable distress.

That is when I heard for the first time that I was “grieving” and that I needed to go through the process of feeling my feelings. I was perhaps even more distressed on the way home because I had finally worked up the courage to ask for help. I had been anticipating the feeling of relief that medication would give me and that been denied. The feeling was awful and I just wanted it to go away.

My family doctor didn’t leave me high and dry, we scheduled some counseling sessions together and later I was offered an opportunity to talk with a social worker. I worked on myself but it wasn’t enough, so when I went back to my doctor a few months later to ask for help again I was nervous because I didn’t want to come across as “drug seeking” (even though I was). She knew that I had been putting in the work and that I was still struggling so at that point she did give me a prescription for anxiety medication.

Oscar’s diagnosis was a big loss. Along with it I lost the luxury of feeling that my kids were safe. I lost the luxury of predictability. I lost the sibling relationship that I had dreamed Olivia would have with her little brother. I couldn’t help but fast forward and think would Oscar ever be able to take care of himself? What will happen to him when we are gone? So many big losses.

But I can relate to the description of a “million tiny losses” because that is where I am at today. I have grieved and coped with the big loss and now I deal with the “tiny losses” daily and sometimes several times a day.

My son is 26 months and doesn’t have a word. Today he said “ma” and I replied “mama” and he looked at me and smiled. I waited… He was looking at me and I was staring at him wondering if today was going to be the day that he would say “mama”. He didn’t. Truly I wasn’t expecting him to, but for a split second I had had hope. After I had eagerly waited, a teeny tiny piece of my heart hurt. One tiny loss.

When a friendly stranger asks, “How old is your son? 11months?” I totally understand that developmentally he is probably about 11months old… but it still hurts. Another tiny loss. “Oh 2 years old is such a fun age… I bet you are busy chasing after him.”… Nope! Another loss.

“When will my brother be able to play with me?” “I want my brother to go to the same daycare that I went to” (an outdoor daycare where the kids hike and ski… totally not appropriate for Oscar) “At what age won’t my brother need his hearing aids?” “Is that the alarm for Oscar’s medications?” So many innocent questions from my 5 year old. I wish he could play with you! I had had him on the waitlist at that daycare and then had to pull him because it wasn’t appropriate but I wish that he had been able to go there. He will probably always need hearing aids… More tiny losses.

These tiny little losses don’t make me cry anymore. Even if I don’t react to them I would be lying if I didn’t admit to feeling a pang in my heart when they happen.

Photo Taken: December 2020

Entry Thirty Four- The Lies I Tell Myself

“The greatest sources of our suffering are the lies we tell ourselves”…”people can never get better without knowing what they know and feeling what they feel” (The Body Keeps The Score by Bessel Van Der Kolk)

This rings true for me.

I will forever be grateful for having access to my social worker. She helped me recognize what I was feeling and taught me how to feel those feelings without being too overwhelmed by them. But sometimes I do still get overwhelmed, particularly by the lies I tell myself.

Yesterday Oscar had a terrible night. He was up from 3am to 6am and therefore so were my husband and I. I could feel that my anxiety was a bit higher than usual the next day. I knew exactly why. First, I know that whenever I am tired I struggle a bit more with my emotions (I think everyone does). Secondly, I know that sleep deprivation can lower a child’s seizure potential and can put Oscar at a higher risk for having a seizure.

But was my increased anxiety appropriate? The rational side of me says “no”. The lie that I was telling myself was that Oscar was at risk. How do I know that this is a lie? Because this is not the first time that Oscar has been up in the night and he has been fine the next day. So how come I can’t learn this? I mean truly learn this. My rational brain knows this, but this thought hasn’t been able to sink deep into my brain. That is the only way I can describe how it feels.

The other lie that I was telling myself was that Oscar isn’t resilient. Experience has taught me that he is. Experience has taught me that he can tolerate a low grade fever and be fine. Experience has taught me that he can tolerate his vaccinations and be fine. Experience has taught me that he can tolerate severe vomiting (from his egg allergy) and be fine. (Dehydration can also be a seizure trigger). Experience has taught me a lot about Oscar and what I can expect. So why do I still lie to myself?

Why is it that I was able to learn deep into my brain what the neurologist told me. I learned that Oscar’s diagnosis is “worrisome”. I learned that other children with the same diagnosis can really struggle with seizure control and that we have to “be diligent” to keep him under control. I learned that the more a child seizes the harder it can be to get them under control. I learned that seizures are unpredictable. Basically I learned that Oscar is unsafe. Why was this more easily grasped by my brain vs lessons learned from my own experience? I don’t know…

I will say that it has gotten better. My rational brain can help to talk down my anxiety, not completely but it can help. My husband also helps by reinforcing what my rational brain tells me. Writing this blog has really helped as well. I think that by sharing my feelings and my story it has forced me to reflect on how far Oscar has come, how far I have come and how much we have evolved as a family. It has also helped to reinforce my rational brain. But I do still tell myself lies!

Photo Taken: November 2020

Entry Thirty Three- My Worry vs Your Worry

My worry is different from your worry. It is not more than or less than but different. I think that I am now in an emotional place where I can understand this. This wasn’t always the case.

I used to be unable to see beyond my own sense of worry and even though I never voiced it, I would silently dismiss the worries of others because I deemed them less than my own. I couldn’t understand how people could worry about something so small when my worries seemed so big (to me). But what I have learned is that what may seem like a small worry to me may be a very big worry to someone else.

For the last 2 years I have been functioning very much inside myself. I have been working on getting out beyond myself and my own feelings. It is a struggle. I was unequipped to appreciate anyone else’s worry because I was so busy trying to deal with my own. This probably didn’t make me a great wife, daughter, sister or friend.

I often scan through various online support groups and although I rarely participate, I will read about some stories and I think of how “small” my worries are comparatively. Some children and families have been through A LOT. I have glimpses of what it must feel like to be them, but I truly have no idea. It sets me straight and helps me get outside of myself.

I mentioned in my last post how I am trying to be as close as I can be to the person I was pre-Oscar. The thing that separates me from her is worry. My worry. My obsession with my worry. My submission to worry. My comparison of worry. My diminished compassion for someone else’s seemingly small worry…

How bad does that sound…I have a diminished compassion for someone else’s worry. I was hesitant to share this thought because it sounds really harsh, but unfortunately I think that it was true. The first step is admission of the problem. I have judged or minimized what other people have felt as worrisome if it wasn’t worrisome to me.

If I want to be a better wife, daughter, sister and friend I have to validate other’s feelings as I hope they will validate mine. I have to rid my brain of this scale of worry. I have to go back to what my parents taught me which is to treat others how you would like to be treated. I have to listen with compassion as I hope to be listened to with compassion. I need to legitimize the worries of others if I want my worries to be legitimized. I need to be sensitive to the feelings of others if I want people to be sensitive to mine.

Everybody is going through something. Everybody deserves to feel how they feel. Everybody’s feelings matter. Who am I to judge?…. but I did. I am trying to be better.

Pictured below are my two greatest gifts. The sources of my highest highs, my lowest lows as well as my biggest worries. I don’t worry about one more than the other, I have equally big but different worries for each of them.

Photo Taken: November 2020

Entry Thirty Two- Excuses

I have conditioned myself to come up with an excuse for anything, to avoid a situation, to stay inside my bubble of comfort. I need to condition myself to come up with reasons why instead.

I mentioned in an earlier post (Entry Twenty Eight) that I have a lot of fears. One of my fears is the fear of being alone. I am afraid that something bad will happen when I am by myself. I specifically mentioned my fear of being alone with my kids. I think this stems from me wanting to protect my kids and keep them safe as well as to shield Olivia from anything scary happening to her brother. Probably somewhere in my subconscious the fear also includes me still not having the confidence that I can handle an emergency situation by myself (even though I have).

Anyways, I always feel more comfortable when my husband is home. I always feel more comfortable venturing out of my comfort zone when he is there. When we brought Oscar home after our second inpatient stay with seizures my parents had been at our house with Olivia and I asked them to stay with us a few days (which they did). The more people I had around me, the better.

I really enjoy hiking. I used to hike alone with Olivia often when she was young. Oscar’s infancy has been different. Although he has been “good” for a long time now, I still have fears. To some these fears may seem irrational, but for me they are very real. I don’t think we hiked with Oscar once last summer. My fear stopped me.

A few weeks ago we were invited to hike with some friends, my husband had to work so it would have been me with the two kids. Olivia especially would have loved it. She would have been fine walking and Oscar would be happy in the carrier… the only problem was that I was afraid. Truthfully, I was scared. I thought of how far the trailhead is from the hospital (maybe 15-20mins) and then I thought of if an incident (seizure) happened at the far end of the trail (maybe 45mins) what I would do?

My social worker encouraged me that coming up with an “exit strategy” may help to ease my anxiety. So I started thinking of one. If Oscar had a seizure on the trail that required emergent medical attention I would be about an hour from the hospital. But if he needed an ambulance (it would meet me part way), so I would just have to run back to the trailhead with Oscar in the carrier and I am sure my friends would be okay with Olivia….

Initially I committed to going, and then I bailed. My excuse was the light rain that morning. But truthfully, rain doesn’t bother me, I was afraid and I used the rain as an excuse. I saw pictures that my friends shared of the hike, everyone looked like they had a great time. Then I proceeded to beat myself up over it because I felt like my fear or anxiety or whatever you want to call it robbed my kids, specifically Olivia of a great time. I hated that.

This is the reason why I have allowed myself to focus on “me”. It truly is best for my family. When I think of where I was 18months ago, literally afraid to go to the grocery store with Oscar and where I am today, I know that there has been a lot of growth. I am striving to be as close to the person I was pre-Oscar as I can get. In order to achieve that I need to continually challenge myself and push the boundaries of my comfort zone. I am hard on myself when I fail to do so.

You have to be aware of a problem before you can fix it. This hike really highlighted how I have developed this initial response of avoidance. I am so quick to come up with an excuse to avoid instead of coming up with a reason why. I am going to work on looking for a reason why.

The picture below is from a hike that I chose to do to prove to myself that things would be okay. I just didn’t have the courage to do it alone.

Photo Taken November 2020

Entry Thirty One- My Day Part II

My previous blog post I commented on how I try to manage a day at home with no appointments and with my daughter at school. These days are predictable and in that sense are a lot easier. I wanted to also share how I try to manage my appointment days.

Right after we learned of Oscar’s diagnosis our schedule was HECTIC! I didn’t want to say “no” to anything that could help him, so we were really busy (I am sure most of you can relate). Thankfully, things have settled down and now most of our appointment days are “quick” meaning just one local appointment (about an hour long). This may be physiotherapy, occupational or speech therapy, naturopath, resource consultant, managing his hearing aid molds, or a visit to our family doctor.

On these “quick” days I do try to schedule appointments early in the morning (9:00am) whenever possible. This way, if my husband is unable to take Olivia to school, I can drop her off at 8:45am and then go straight to the appointment. Now because of COVID, the majority of our therapy appointments are virtual which means that I just have to get home, turn on the computer and login to our session. If it is a therapy appointment, that will constitute the majority of his therapy time for the day.

I am a physiotherapist and so I do probably bias physiotherapy with my available time. Gross motor development comes before fine motor development, so for that reason as well I have focused more on the gross motor skills (physiotherapy goals) knowing that those will probably be achieved before fine motor skills (occupational and speech therapy goals). Regardless of what appointment it was in the morning, I still focus on getting Oscar weight bearing or walking as much as possible, and I will incorporate our speech and occupational therapies into playtime.

The rest of our day pretty much proceeds as a “typical day”. After the morning appointment, I will go for a run or a walk to get outside and for both of us to get some fresh air and a change of scenery. Some of our appointments are now phone calls (because of COVID) and I will schedule those during nap time. There was a time when we would have several appointments/week (5-7) and I hated that everyday I had somewhere to be at a certain time, so I would book a couple/day just so that I could have a day “off”.

A long appointment day would be if we have to drive 45mins (one way) to his audiologist or if we have to drive 2 hours (one way) to The Hospital for Sick Children in Toronto. On these longer days I prioritize feeding, sleeping and getting Oscar out of the stroller as much as possible. I will definitely pack a “meal I can count on” and several snacks that I know he will readily eat without much encouragement.

The other days that I should mention are weekends when I have both kids to myself because my husband is working. Typically by 9:00am my kids will be dressed, fed and the kitchen cleaned up after breakfast. I will usually throw in a load of laundry too (every Sunday I do all of the sheets and towels). Then we will do Oscar’s therapies until about 10am. After that we all need to get outside and this is when we will go on a bike ride, a long walk or some form of exercise. When the first half of the morning is “Oscar’s time” and the second half of the morning is an activity that Olivia will enjoy it helps to balance my mom guilt. During nap time Olivia and I get some quality time together and we will usually bake, do a craft or she will help me with something around the house.

I can be flexible with my day, but I have found it helpful to have a sort of template for each day type to keep me focused and help me manage my time. Life can’t be all appointments and therapies. It is a challenge to balance everything, and most days my “to-do list” isn’t completed. I have learned that it is equally important for my husband and I to get out together and enjoy where we live.

Photo Taken: November 2020

Entry Thirty- My Day

A couple of people have messaged me asking how I schedule my day to “fit it all in”. Most importantly, I want to make it clear that I struggle everyday to accomplish what I want to accomplish and many days I am unable to get it all done. It is busy being a mom, especially a mom of a special needs child whose day isn’t “typical”. Like many of you I have appointments either virtually or in person, Oscar has 19 people in his care team and I am in regular communication with most of them (which takes time) and outside of those appointments I have therapeutic activities that I need to do with Oscar. Then of course I also have “regular life stuff” like laundry, groceries, dinner, school pick up and drop off and extracurricular activities for my daughter.

The other thing that I want to make clear is that my lifestyle may be different from yours. For example I just started back to work 1 day/week, so I may have more time at home than you do. Also, I hear that many of you have to “fight for services”, I am fortunate that where I live services are provided and funding isn’t an issue, so this time that I am able to “save” and spend on something else. Another thing that saves me time is that we live in a small town so I can accomplish my errands fairly quickly because everything is so close.

I have never been great with time management, but I have come up with a few alterations to my day that helps to buy me some much needed time. I wanted to share my average day with you and maybe some of my shortcuts will work for you as well.

My shortcuts:

Grocery Pick Up- I used to go to the grocery store at least 5days/week. Do I prefer to pick out my own produce? Yes! But, I have gained a lot of time by shopping online and picking up my groceries at the store. I think that this may have also saved us money because I now have to plan meals in advance and I avoid purchasing random items that weren’t on the list.

Prioritize- I know I can’t do it all, so I need to prioritize. This may sound obvious but my first priority is always feeding Oscar. (Someone actually had to tell me this). Oscar has never been a great eater, especially if he is tired. Breakfast is usually okay, but I need to make sure that I am not pushing his lunch or dinner too late or else he won’t eat a good meal. My next priority is always his therapeutic activities. We do these everyday. I need to remember not to overdo it or else he will be too tired to eat. So I watch for his cues telling me when he is “done”. During his nap (when my daughter is at school) is when I will post on instagram, work on my blog and run around doing household chores. I have found it helpful to have “days” for certain tasks ex: I wash the sheets and towels every Sunday. This also helps keep me focussed on my priorities for that day.

Therapy-As far as Oscar’s therapies go, I do have to prioritize those exercises too. He is in physiotherapy, occupational therapy and speech therapy. Each of those appointments are an hour long. It is impossible for me to do an hour of each everyday. So I have to prioritize our goals. For example, Oscar is now standing up on his own, for him to do this without supervision he needs to be able to lower himself safely to the ground independently, so this is one exercise that I make sure I do everyday if not multiple times a day. I will incorporate fine motor tasks when he is in standing. For example when he is standing at the sensory table I have some cups and demonstrate to him how to put one pasta at a time into the cup. Here we are working on playing in standing with a fine motor task. During mealtime and standing balance we are always singing songs (working on our speech goals) and I label everything for him. I need to figure out how to combine multiple therapies into each activity so that we are working towards our current short term goals.

Me Time- My husband and I have come up with a schedule that works for us. My husband works long days, but they start at 8:30/9:00am. So, we have dedicated 3 mornings/week to each of us. My husband gets Monday, Wednesday and Friday mornings 7-8am to go to the gym and I get Tuesday, Thursday and either Saturday or Sunday morning 7-8am to run. We have made this a priority for each other because we know that it is important.

My Typical Day (A school day for Olivia and no appointments for Oscar)


7:30am- Oscar’s morning medications. Oscar usually wakes up around 6:45am and Olivia soon there after.

7:35-8:15am- My kids are sitting at the table ready to eat breakfast.

8:15am- Olivia will go upstairs and get dressed (into the clothes that were laid out for her the night before), brush her teeth and bring me down her hairbrush and hair elastics so that I can do her hair for school. Oscar is usually still in his highchair eating his breakfast.

8:30am- My husband is ready for work and will typically drop off Olivia at school on his way to the office.

9:00am- By this time Oscar and I are dressed and ready for the day. If we have an appointment that day, I like to try to book it for 9am. I like to “get it over with”. I find it easier to balance my day this way. If there are no appointments then this is when we do our therapy, typically for an hour.

10/10:30am- By this time I am eager to leave the house! Fresh air and outdoor time is good for everyone. I do not feel guilty putting Oscar in the stroller, it is okay for him to rest and enjoy a bit of fresh air too. This is when we will go for a walk with our dog, Sumatriptans and if it was not my turn to exercise that morning I might get in an extra, short run as well.

11:30am- Oscar is eating lunch. He is typically tired and because of this lunch isn’t usually his best meal. So I will often use one of his “meals I can count on” (see Entry Seventeen- “The Outliers”- Eat for more info).

Note: I do like to take the time 2-3days/week to make a large salad that I can keep in the fridge for myself. I do like to use kale as the green because I can have the salad prepped with even dressing and the kale won’t wilt. For recipe ideas check out the Self Care menu.

12:15pm- Hopefully Oscar is napping! I need to have him nap by the LATEST 12:30pm so that he is awake for us to go and pick up my daughter at school by 3:00pm.

12:15-2:30pm- This is a busy time! I try not to be on my phone around my kids, so I will catch up on any necessary communication. I usually will have started laundry earlier in the day so that it is ready to fold and put away during this time. I will do any necessary household chores and prep dinner.

2:50pm- Thankfully we live 3minutes from Olivia’s school so if Oscar isn’t awake, I will let him sleep until as late as 2:45pm and then I have to wake him up to get his sister.

3:00pm- I do try to conserve my time as best as I can. I mentioned that I now do grocery pick up. This saves me so much time and I believe that it also saves money too. Since I already have both kids packed up in the car I typically schedule grocery pick up between 3-4pm so that I can go straight from school pick up.

3:30pm- We are back home and both kids will have a snack. Olivia sits at the kitchen island and I pull Oscar’s highchair up to the island as well. I will give Oscar a snack that he can feed himself (granola bar, veggie sticks, cubed cheese…) and I can monitor both kids eating while I put the groceries away, or do some other clean up in the kitchen.

4/4:30pm- We will go outside again either playing in the backyard or we will head out for another walk. This is why I really like taking advantage of Oscar’s nap time to do a little bit of dinner prep because it allows me to enjoy some playtime with the kids before dinner.

5:15/5:30pm- I will usually start putting dinner together during this time. While I am doing this, Oscar will be in his walker and I might put on a TV show for Olivia.

6:00pm- Dinnertime!

6:30-6:45pm- Bathtime.

7:00-7:15pm- OIivia is in bed.

7:30pm- Oscar gets his medication and then he goes to bed.

Another note: Oscar does get supplements in his milk everyday. To make life easier we (typically my husband) will prepare the bottles the night before so that they are ready for next day.

And that is it… our typical day with our kids. Obviously this changes a bit if Olivia has an activity or when Oscar has an appointment. Like I mentioned before, I do try to schedule local appointments for 9:00am, I find it less intrusive on the rest of the day. If we have a morning appointment I will do Oscar’s therapeutic activities after his nap.

I was not this regimented when Olivia was young, but now there is more to fit in and I have found that I do need to structure my day. I hope this helps. Please share any tips or shortcuts that have helped your family!

My little pandas Photo Taken: October 2020

Entry Twenty Nine- The Monitor

The other day my daughter handed me a picture that she had drawn. It was a picture of her, her dad and I sitting in the hot tub together. She captured a rare moment of the three of us spending quality tome together while Oscar was napping. She was explaining all of the details of the picture and when I asked, “what’s that?” and she said, “the monitor.” It was an awakening moment for me. My husband and my parents have commented on my excessive dependence on the monitor, but now my 5 year old has picked up on it too.

I am aware that the monitor has become my security blanket. If I am not physically with Oscar, I am staring at his monitor. I haven’t let myself wean off depending on it. It is too scary for me… it causes too much anxiety. 

Neurologists have assured me that parents are the best “monitor” for a child with epilepsy, “You will just know” she said… The problem is I don’t trust that I will “know”.  I don’t trust that I will react fast enough. So, I am glued to the monitor. 

The last time Oscar had a seizure he was quiet. What I mean is, he wasn’t laughing or crying or making any noise at all. So unless we were watching him, we would never know that he was even having a seizure. I have heard other parents say that their child may scream or cry before or during a seizure which alerts them to the situation. I don’t trust that Oscar would do that now because he has never done it.

I remember when we were first home from the hospital and were adjusting to our new normal, I was scared to sleep. Who will be watching him? I wrote about this in a previous blog “Entry Twenty Four- Night Shift” where we would take shifts being up at night. It wasn’t a sustainable solution. When we eventually graduated from the “Night Shift” I would have to convince myself to surrender to sleep at night. It was challenging then and still is a challenge today, although it has gotten a lot easier.

I have talked about this with my social worker. She agrees that my level of vigilance is not sustainable long term. And I know that once he is of a certain age a monitor will become an invasion of his privacy. I know that I will eventually have to get rid of it… which terrifies me to even think about. 

I am supposed to be working on increasing the length of time that I don’t look at it. Honestly, by the time I get to just a couple of minutes my anxiety has already crept up to a very uncomfortable level. My husband will sometimes get frustrated and take the monitor and say that he will watch it. But then we get into a disagreement because I don’t feel like he is watching it carefully enough. And the truth is, I know that his level of vigilance is different from mine, but is probably more appropriate for Oscar’s current needs.

I had been thinking about writing this post for awhile. The reason why I am sharing it now is not only because of the picture that my daughter drew. We had a power outage and the monitor wasn’t working, so I was sitting in a chair in Oscar’s room after he had fallen asleep monitoring him until the power came back on. As I was sitting there, I started this entry. I know that my vigilance doesn’t appropriately match up with his current need. I know that this is a problem… my problem, I just don’t feel ready to fix it yet.

Just a little side note that we did decide to purchase a back up power supply for future power outages.

Drawn by Olivia: October 2020