Parent Care

I like to write about this subject once every month or two. It’s an extremely important one and it’s something that all moms especially those with children who have special needs or who have gone through something traumatic deal with. It’s the mom‘s mental health blog.

Parent mental health is something that is often talked about but not often dealt with. It’s rare that we take time for ourselves. We as parents are pulled in so many directions. Right now my daughter is fighting sleep until late. Once she is in bed I stay up too late just to get some time with myself and my husband, meaning I wake up tired. It’s a cycle that keeps repeating but I know it’s not going to be forever. I know that squeezing in that small time to myself is huge, even if it means I need another cup of coffee in the morning.

I have several hobbies that give me my “me time”. I run my own minky products business and I work on that as often as I can. I also read, a lot. Reading is something that I don’t compromise and read every night before bed. I make sure I am in bed early enough to read before falling asleep. Find a hobby for yourself that you don’t compromise on. My husband walks, he walks between calls, he walks in the morning, he walks in the evening.

Parents, take time for yourself. Soak up that extra five minutes in bed, don’t feel guilty when your child is playing by themselves. ENJOY IT! Right now my daughter is singing to herself and playing in her messy room. I need to remind her to clean it, I need to vacuum under my bed, I need to get a workout in but I am writing this blog. I am spending the extra time I can to write this blog and catch up on a show. At some point my daughter will come in and want me to play with her or take her to the park like I promised. Until then I am going to sit and type, drink my coffee and plan the day.

Married with Special Needs Children

Marriage is hard. It is one of the hardest things I have done but it is also one of the greatest. We have the challenge of raising two beautiful children but each have their own set of special needs. Sawyer requires nightly meds, a constant watchful eye and g-tube feeds. Those are the minimum. If it’s too hot he doesn’t like to be outside so we end up one inside and one outside with his sister. If it’s too hot we can’t go on a family walk. There are times he isn’t feeling well so one person has been up most of the night.


It’s incredibly hard to find time to ourselves, left alone together. We try to get out for a date night every few months but during the pandemic, forget it. It’s incredibly hard to find someone who can watch Sawyer. His seizures aren’t easy to detect (unless you know him well) and they require a quick response with rescue meds a 911 call and an ambulance ride.


We have learned to adapt. We have hired an evening nurse for a few nights a week and we try to find a sitter for his twin sister so we can get out and at least have dinner. It’s been helpful to get some time to ourselves. When you become parents you lose a little piece of who you were as a couple. You forget how to flirt, how to be a couple without kids.


My challenge to you this month is to carve out once a week where you watch a show together, play a game, go on a walk, or cook dinner together. Talk about things OTHER than the kids.


Marriage is hard but it’s work and i’ts work that is worth it. As a couple you can be a stronger unit when you have a stronger bond. Focus on each other at least a few times a month. Put the phones down and spend quality time. You won’t regret it.

Too Much Control

Why do insurance companies get to make the call of if my son can have something to improve his quality of life? Why do insurance companies have so much control over the lives of our children? These are questions that consistently dance around in my head from day today. The power that insurance companies have over making life and death decisions for our children is absolutely mind blowing.

We recently scheduled Sawyer for his vagal nerve stimulator surgery.

In my last blog I talked about it being surgery number 13 and how helpful it would be for him. Unfortunately, two days before surgery they had to cancel it because our insurance company had denied it. Their reasoning stated that we had not tried enough things such as; medicines and that he doesn’t have them often enough.

The thing that they failed to notice is they recently approved his other medicine that we wanted to try, while we wait for the VNS. They approved it, but covered so little that we would be paying $1500 per month for a very small percentage of a chance of it working. When we decided for a different therapy they denied that as well. The vagal nerve stimulator is definitely not a 100% guarantee. Sawyer also doesn’t have seizures every single day he doesn’t even have them once a month. When Sawyer has seizures they require an ambulance ride and an extreme amount of medical intervention. They are very much life-threatening and require sometimes five doses of his rescue to stop them. At that point he either has to be intubated or put on high levels of oxygen because his breathing is so suppressed.

The vagal nerve stimulator could improve his quality of life so much so that even just making the seizures less severe could be life altering. If we do not have to hold our breath anytime we are out of town, any time that he is falling asleep or any time that he is sick should be enough to do the surgery. If this stimulator could prevent an ambulance ride or hospital visit and slow down the seizure so the rescue medicine could work; then maybe one dose of that would be a game changer for us.

Why do they feel as though they can make this life or death decision?

What I don’t understand is why they don’t see that it is a detrimental medical intervention that they have turned down. Why do they feel as though they can make this life or death decision? Do they truly believe that doctors would recommend a surgery that isn’t researched and best for their patient?

When I called the insurance company and the person I spoke to said they couldn’t believe that it was turned down she said she would get back to me in 48 hours with a list of things to do or some answers. I called back after a week and I have yet to hear back and this was two weeks ago. I can’t understand why insurance companies hold the power over our lives and our children’s? What can we do to help prevent this? I don’t have all the answers. I don’t even have some of the answers.

What I do know is these people do not walk in our stressful shoes. If you are reading this, I am sure you have been there or heard of someone in our shoes. We are not even a fraction of the people who have problems dealing with insurance. Keep Fighting and keep asking questions.

Siblings, the Hidden Trauma

“I wonder if there will be lasting effects, will she resent me for taking her to so many of his therapy appointments through the early days of her life? When I look back at photos I see so many of them in doctor’s offices, was her childhood innocent enough?” Guilt plagues any mother and when you throw in the complexity of a special needs twin the guilt is doubled.

Quinn and Sawyer (5) had a complicated first few months of life. They both became extremely ill, fought for their lives and found themselves with lasting effects. Since Quinn was an infant she has been scared of the doctor. Her anxiety leading into unpredictable situations can be tough to manage. Quinn has not slept through the night in 3 years and we have tried everything to help her sleep. We have seen multiple therapists and specialists to help but have not had any luck.

For years she cried and screamed anytime she had to go to the doctor.

She would fight going to the doctor. I know many kids are like this and that isn’t what makes it so tough. What makes it tough is the anxiety that lingers after. After a visit with the doctor she will worry to the point of having nightmares. Thankfully she does not have to see the doctor often but when she does we have to explain over and over on the way to the doctor exactly what will happen. She has learned to advocate for herself at the doctor. Now she is beginning to have anxiety about her brother.

Unfortunately, she has seen many situations where Sawyer gets a blood draw or has to do something at the doctor he doesn’t like. She’s seen him get sick dozens of times and need a hospital visit. She has seen him have seizures and had to be handed off quickly to a neighbor with out a goodbye while we put Sawyer in the ambulance. This is a lot for a child to handle and it’s more than she should.

How can we possibly shelter them from the trauma that we endure as parents?

Quinn is now five and finally able to articulate how she is feeling and tell me about her dreams. A week ago she was sleeping in bed with me at my grandmas house and she woke me up saying “No! No! No!”. She explained to me the next morning that she had a dream she was having surgery. She has woke me up last night because she had a very scary dream but didn’t want to talk about it. How do we as parents help our children that are simply bystanders in a complicated life? How can we possibly shelter them from the trauma that we endure as parents? I don’t know the answers to these questions but I do know that we have tried accommodating her. We are very thorough in explanations when going somewhere unpredictable. We spend time discussing anything her brother is going through and we give her time individually to play without her brother and to just be a kid.

I guess the reason I have gone through all of this explanation is because its easy to forget the struggles of the healthy child. They often make sacrifices for their medically fragile sibling and many times their needs come second to that of their sibling. It’s a complicated relationship and one that often comes with a lot of emotions.

A Cold Isn’t Just Cold

Sometimes it’s hard to explain to friends and family how critical their choices are in keeping Sawyer safe. During the pandemic we were extremely careful with visitors finding out later they weren’t honest about risky behaviour. For Sawyer a cold is never just a cold. While I do know that he is going to get colds, he is going to get germs, especially in school we try to maintain certain behaviours to keep him safe. We hand wash a lot and carry hand sanitizer in all bags. During cold and flu season we ask that family get a flu shot before visiting, and wash hands and sanitize frequently.

We also limit our outings with friends during cold and flu season. We be very aware of sharing food and washing our hands. It’s not always easy to explain but it’s what we do to keep Sawyer safe.

Recently Quinn came home with a cold from a neighbour. We recently opened up our restrictions on Quinn playing with friends, she has to be a kid! The neighbour wasn’t showing many signs at all and she has had dozens of colds so her immune system is prepared to handle it. We did our best to keep Sawyer and Quinn separated but they are in the same house so there is only so much we can do.

After a week Sawyer began to get congested and by 48 hours in he was so congested he was requiring oxygen during the day. Sawyer does not need oxygen on a daily basis. We have it for seizures and colds for overnights. We don’t use it during the day and when we needed it; it was a sign we needed to go in. This ended up in a 3 day hospital stay, 3 blown IVs, 2 antibiotic shots in the thigh muscle, lots of neb treatments and sleepless nights.

A cold for Sawyer isn’t just a cold, he can turn quickly and get very ill.

Often times he begins vomiting so much that he gets dehydrated. This time he wasn’t vomiting but had oxygen needs. While I know he is going to continue to battle things things; I know we can’t wrap him in a bubble. However, we can continue to be as safe as possible. We can continue to say no to family visiting that isn’t vaccinated or has recently been on a plane.

For now we are continuing to think of things as a case by case basis. They have to be kids, they have to play with friends but we can keep our bubble small. It’s a tough journey and exhausting but its so worth it to keep Sawyer out of the hospital.

(Un) Lucky 13?

Next week we head into surgery number 13. This is yet again an elective surgery but one that we hope will better Sawyer’s quality of life. This one for us was one that didn’t take much thought. Sawyer will be getting a VNS (Vagal Nerve Stimulator) or what I like to call a pacemaker, for his brain.

When he has a seizure, they are life threatening.

Sawyer has a severe form of epilepsy, meaning when he has a seizure, they are life threatening. They are also uncontrolled with meds and hard to detect. It’s a terrifying situation to be in, not knowing if this seizure will be too much for him to handle. He is also at high risk for SUDEP, sudden death by epilepsy. Some nights, I feel like I should be sleeping with him just so I can hear any changes in his breathing. His service dog sleeps in his room with him but nothing is 100% effective in detecting seizures. 

The VNS will send an electrical signal to his brain anytime it detects a seizure. It isn’t 100% effective in stopping seizures. However, in many children it reduces the amount, length and severity of the seizure. This alone was enough for us to give it a shot.

As of right now we live life on the edge. We are constantly on the look out for a seizure and plan our lives around the “what if’s”. What if he has a seizure when on vacation? Which hospital should we go to? Maybe he will have a seizure when I am up north visiting my family, how will dad handle it on his own with no support? I know I certainly don’t want to be alone when/if he ever has a seizure when Ryan is out of town. What if I don’t hear the pulse oximeter overnight and I wake up and he’s not breathing. It’s so so much to worry about. I am praying so very hard that this VNS can make a difference in quality of life for all of us.

Surgery is never easy…

No matter how many times he has been through it. It’s hard to go under anesthesia, come out of it and deal with sutures on top of that. Sawyer has a history of not doing well after surgeries. Most recently (although a big surgery) he ended up in hospital for 11 days with pancreatitis and a PICC line. The trauma alone of another surgery and sitting in a hospital room waiting is enough to cause nightmares in the weeks ahead of surgery. I do however feel strongly that although this is elective, it is absolutely the best decision we can make for him right now. I have had no second thoughts and am praying for a good outcome.

Special needs families: Plateau’s and where to go

What do you do when you’ve hit a plateau?

You are doing the same thing over and over with fewer and fewer results.

I often find myself falling into plateaus with my weight loss.

What worked for the past 3 months isn’t working now. I am back to gaining weight.

When I find myself here I change up my routine and what I am doing.

I change how often I am working out, make sure to get adequate sleep, drink more water or anything to help me get over the hump.

We recently found ourselves in this situation with Sawyer.

We were doing what we could at home but the pandemic had vastly reduced our physical therapy hours.

Sawyer was at a stand still and we were working with him every day but needed direction. [Insert a random Facebook comment here] A mutual friend of my uncle commented on a post about my son.

She commented that we need to meet this therapist named Josh in Ohio.

I was sceptical at first and even had to reschedule a few appointments.

Going to Ohio for 3 full weeks wasn’t a small undertaking for our family and it made me extremely nervous.

After hearing Josh speak to us and hearing what he had to say we knew it was a God moment.

It was a moment that God pushed us to exactly where we needed to be, despite it being scary.

Sometimes the best things are the scariest things in life.

In one simple video call Josh gave us HOPE.

He gave us hope for the future for our son. He said things that made so much sense about Sawyer.

He didn’t diminish the fact that Sawyer’s brain injury meant he would never accomplish some things.

He said that often times these kids accomplish so much more.

After our call I looked at Sawyer’s nurse, who has now become a sister to me and we both just smiled.

We felt the hope and saw the future for Sawyer that felt so far away.

Sometimes that ’s all it takes but for us, this is the beginning of the story.

Follow the next blog for the months leading up to therapy and the time in therapy.

To the special needs parent…

You are very much surrounded by a community of parents that understand your life.

You may feel alone but know there is a parent out there in your situation that is standing with you in solidarity.

Whatever you are feeling and going through, someone else has or is going through it.

YOU are doing a great job. YOU are making a difference in your child’s life.

It’s tough. It’s hard.

Sometimes you just need to cry, scream and eat a giant bag of chips.

I’ve been there just like you. Celebrate all your child’s triumphs, there are so many people that are celebrating with you.

Fight like hell for what you think is best for your child.

YOU are the expert in your child.

Experience things with your child and enjoy them.

Be a mom when you can.

Be a nurse when you need to and be a therapist when you have to.

You are exhausted. You are drained emotionally and physically.

There are days you wish you had a different life. I hear you.

Sometimes you feel as though you are the only one advocating and researching to make the best life for your child.

You are working a full time job being a special needs parent.

I see you but remember you are doing a GREAT job.

Parenting isn’t easy, no matter the situation you are in.

Every parent has hard days, every parent has days that they feel as though they aren’t a good parent.

Every parent feels that they can do more. It’s NORMAL. YOU are normal.

YOU just may have more on your plate.

I see you. I hear you. I feel you.

Reach out if you need help or someone to talk to.

Find something for YOU something that will help fill up your cup.

Find a hobby, however small and take time for you as often as possible.

I know you often live in survival mode but remember to take care of yourself so you can be the best version of yourself.

YOU matter.

Special needs parenting: Finding Resources

Have you ever spent time researching something?

Most of us have spent time researching one thing or another.

For some, like my dad, it’s a way to kill time, a relaxing thing to do after a long day, a way to answer those “I wonder” questions.

For us (parents of special needs) it’s an arduous and often frustrating process.

Special needs equipment is so expensive and also hard to find.

I have talked to many parents that adapt their own equipment and “hack” things to help their child.

Why does it have to be this way? It’s frustrating!!

Firefly has given us so many options.

They have given us the Go To Seat that helps Sawyer sit in any seat and even a shopping cart!

We have the Scooot that helps Sawyer scoot around the upstairs as well as provides a wheelchair that he can move on his own eventually.

Don’t even get my started on the endless opportunities of the Splashy seat.

We have used it at beaches, pools, showers, bathtubs and even in the snow! Sawyer has been able to enjoy his sprinkler with his friends outside in the summer.

Now, the biggest question, why did I have to find out about this amazing company through a friend?

Why aren’t more doctors and therapists privy to this company and others like it (if they exist).

I know that many who are reading this are familiar with Firefly, but what if this blog is shared to someone who isn’t familiar?

What if this changes the life of a special needs child like it did ours?

What if, just what if, this blog reaches a parent that is feeling defeated?

I want to make sure you understand that I DO NOT work for the company.

I’m a special needs parent that has tried all the equipment. I am a Firefly user and advocate.

I have every product and look forward to more that come out.

Now, for the most important part: use your community around you.

What I mean by this is USE other special needs parents.

Use the ones in your community and the ones outside of it.

Learn from parents who have been there and share successes or things you have found that has helped.

We are a large but tight knit community, use it.