Any parent that decides to take on the task of traveling knows how tough it is.

Kids have so much stuff!

Combine that with all the things they need for entertainment during the road trip or flight, throw in headache meds for you and headphones for all to help curb the “Are we there yet?” question every 5 minutes.

It is EXHAUSTING!

Now, imagine traveling halfway across the country with a special needs child and all their “things” for 3 full weeks.

It’s a monumental task in and of itself.

The planning ahead isn’t for the faint of heart.

Many special needs parents just don’t do it.

It’s a huge undertaking and takes weeks of planning, not to mention the risk involved leaving all their regular doctors in case of an emergency.

We have found that we are happier when we get family vacations or we travel.

It’s very stressful leading up to it and we always have a contingency plan for emergencies but we come home feeling refreshed.

We have been to visit family in Oklahoma several times, travelled to Virginia Beach and most recently we travelled to Cleveland, Ohio for intensive therapy.

We knew this therapy could be life changing so we began planning 4 months before.

I am no expert but I do have some tips and tricks I have learned along the way.

List, list, list!!!!!

Use lists to keep track of every possible item you may or may not bring.

Narrow things down as you pack but for peace of mind, write it down.

If you are driving:

Rent a roof rack if possible and if not, use vacuum bags to make clothing smaller.

Pretend you are an expert at Tetris and use every available inch.

If there is space, I find something to put in it.

Overpack entertainment for the car

Pack overnight bags if you are staying overnight so you don’t have to take everything in.

Pack extra supplies (diapers, chucks, wipes, clothes) in a small bag or in your overnight bag so it’s accessible.

Order your supplies about a week ahead of time and keep them in the box to load up.

I actually opened the box, took out the filler paper and found more space for other supplies in it. 

If you are flying:

Travel on the plane with the least amount of baggage possible.

Trust me, having hands free is worth every penny of checking your bag.

Have a small bag of emergency supplies, all meds and entertainment.

Ship supplies to your destination if possible.

We have done both, we shipped supplies ahead of time and we had a suitcase dedicated to supplies.

It’s much easier going to and from the airport with less in your hands.

Lastly, don’t be afraid.

It may be daunting at first and there will be hiccups but just because your child has special needs, doesn’t mean you should skip those important family vacations.

When we were told of Sawyer’s infection at 2 weeks old we were given the decision to do surgery and take all life saving measures or not.

We decided that as long as he shows us he is going to fight then we will fight along side him.

Sawyer has continued to fight with everything he faces.

In turn, we have continued to fight for him.

It’s important to us to fight like hell for everything that he deserves and that could benefit him.

We have found the best doctors for him, the best therapists for him and the best equipment for him.

We have bought and owner trained his service dog to provide anxiety relief during appointments, med retrieval and seizure alert.

It’s not been an easy path but I know that Sawyer is better for everything we have fought for him to have.

It has easily become my full time job researching the best treatment and what is going to give him the best opportunity to thrive.

It is a FULL TIME JOB.

I spend each day planning our schedule and thinking through what needs to be done.

Each day I am training his service dog, reaching out to doctors or scheduling specialist appointments.

Sometimes it’s hard to understand someone’s situation.

It’s hard to walk a mile in their shoes.

As much as I want Sawyer to be just a kid, he requires full time care and having that extra support of evening nursing or a service dog is not only good for him but extremely important to me for my sanity.

I get a small reprieve when my son’s nurse is working.

I have someone who knows him just as well medically to bounce ideas off of.

When there is an emergency I will be able to count on Gryff (Sawyer’s dog) to get meds for me or hopefully get help.

If I want to leave the house and do something for myself when my husband is working, I can knowing he is safe.

Nursing isn’t a crutch, it’s a lifeline.

When I talk to parents about nursing I remind them that it’s not admitting defeat, its giving the critical time to recharge as a MOM.

Yesterday as we were watching TV, Sawyer reached over and held my hand.

All parents know the warm feeling they get when their child does something sweet like this.

It feels so good to be reassured that you, as a parent, are doing a good job.

For Sawyer almost all his communication is non-verbal.

He can’t say “I love you” (yet).

I hope that some day he will be able to say it with his eye gaze and maybe even his voice.

He says two syllable words but most sound the same.

He shows love by smiling, laughing, kissing and now holding hands.

The absolute hardest part for us aside from the obvious medical stuff is trying to figure out what Sawyer is thinking.

He is incredibly bright and we are finding more and more how bright he is.

He knows so much and hears everything we say.

He’s been using his eye gaze to tell us more and that has been incredible.

I still find myself doubting and questioning what he is thinking or trying to tell me.

I wish I didn’t question it but sometimes it’s hard to believe what is right in front of you.

For years we have relied only on Sawyer’s non verbal communication.

When we ask a question he gives us a big smile for a yes.

We give two choices and he follows with a smile when he chooses.

That has always been how we communicate.

Now when he says things like “all done” when the teacher asks him to work more, I think, can he really be saying that?

It’s almost unbelievable to me how bright he is.

He has overcome so much and now is being snarky and playing jokes with more than his non verbal.

He’s using his eyes to read words that are in front of him!!

It’s been so fun to see.

As of right now it’s just one and two words but I have no doubt that at some point he will be saying full sentences and asking for more of what he wants.

For now we will soak up all the little words and ways that he communicates love and his wants and needs.

We’ve been through hell and back the past several months.

Sawyer’s hip surgery was anything but by the book and he ended up in extreme pain and with a severe case of pancreatitis.

We did this surgery to give him the best possible future.

It was a decision we didn’t come by lightly but we wanted to give it one shot.

It has been 3 months since surgery and Sawyer is only just now beginning to take steps again.

He still has muscle cramps and he still gets very sore but we can see the light.

Every day as a parent you make decisions for your child.

It can be small or it can be a large decision but they are equally important for your child’s well being.

It’s the repercussions of those decisions that vary.

We met with our orthopedic surgeon yesterday and Sawyer’s ball joint is DYING.

He says that this is normal after a big surgery like he had and it will regenerate but he may have some stiffness and pain in that joint for up to a year.

He also mentioned that his increased muscle spasms is normal and can last much longer after surgery since such a huge surgery threw his body out of whack.

While we very much trust this surgeon it wasn’t easy news to hear.

It feels that although we did this surgery and he is improving, he may still have a long journey to being back to normal.

Our biggest question we have is “When is the payoff coming?” Will he get back to himself and then we have to do another surgery to remove the plates from his femurs.

Will there be a payoff or will this have been a long and exhausting band aid fix for the bigger problem, his cerebral palsy.

We are heading to an intensive therapy in April and we are excited to see the flexibility and movement that we will see after therapy.

Even if Sawyer feels better and learns how to move his body in a way that works for him we will be happy.

He brings us so much joy each day and the least we can do is give him every opportunity to thrive.

I have been very open about my PTSD through this journey.

I feel that it is important to help other parents understand that it is normal to have PTSD.

It’s normal for parents to stress or relive the trauma they have endured.

For me, it’s in the form of worry, confusion and nightmares.

This means that even though I’m sleeping, the dreams I am having are so stressful I often wake up tired.

I went quite a while feeling good and life wasn’t so stressful.

I thought “maybe this is the light at the end of the tunnel.” As quickly as I thought that BAM something comes up that spins me backwards again.

That “BAM” was an intense surgery that caused Sawyer a lot of pain.

He spent 5 days in the hospital in extreme pain and came home in pain.

We have been up every night from one to to two hours, sometimes more depending on pain and nausea.

Sleep deprivation is hard enough as a parent but when you combine that for weeks on end and playing the game of cat and mouse, it’s a lot.

It increases depression, anxiety and overall feeling of being down.

These things compound into doing things that make me feel better in the moment such as spending money or eating junk food.

They do not make me feel better overall.

It’s a nasty spiral that I suspect a lot of parents of children with complex needs go through.

We are in the weeds of a very tough season. I know things will improve.

I know that he will begin to feel better which means he will sleep.

It’s hard to imagine that right now when we are in survival mode.

I pour my heart into this blog not to make people feel sorry for me, but for people to understand what goes on in the mind of a full time complex care mom.

Even though there are times that aren’t quite so hard as now, the anxiety and stress are still simmering under the surface.

Moms and dads tend to carry battle wounds and it’s not often we share them.

We feel as though we need to be strong but it’s ok to share our weaknesses.

It’s ok to admit you need help and it’s ok to ask for help.

I hope that all parents reading this will give themselves grace.

YOU are doing an amazing job. YOUR CHILD APPRECIATES IT!

After many trips to the neurologist, a failed attempt at eradicating the seizures with high doses of steroids we are back to trying to control the seizures.

Sawyer’s infantile spasms have grown into epilepsy.

He has very aggressive and prolonged seizures and our angel neurologist has left us in the hands of another really great neurologist.

Sawyer’s seizures now are so hard to detect unless you know what you are looking for.

He simply begins drooling, looks to the left and his right lip and thumb twitch.

The doctors and nurses rely on me to tell them if he is having a seizure which is stress beyond belief.

It all rests on my shoulders whether they administer more meds, give him more IVs or even intubate.

It’s scary but in the moment I remain calm and listen to my gut.

 I am happy to report that Sawyer is thriving more than we ever could have imagined.

He is incredibly smart and speaks with an eye gaze.

He remembers and understands everything and keeps us on our toes with his pranks.

He is working hard on walking. He rolls over both ways and spins himself around by kicking and spinning.

He can get himself all over the room if given enough time.

We do think he will be able to be potty trained at some point since he is very aware of when he is going.

We are feel so incredibly blessed that the nurse that day on the phone said that we should do an EEG just in case.

Infantile spasms can be devastating developmentally for children if they go on too long.

These seizures don’t look like the typical seizures and babies are so uncoordinated with heir movements at first that it is hard to detect but if your child is having repetitive movements, having the unprovoked “drop reflex” or something just doesn’t seem right.

It’s important you go and get an EEG.

Although these spasms are subtle they are an absolute emergency and need to be treated immediately.

Sawyer is a thriving little four year old boy and we don’t like to think of the outcome had we not caught these seizures.

Advocate for your child and ask questions.

As we entered the hospital I went straight to the front desk.

This was my first time at this hospital and little did I know that this would become a home away from home.

“I need to be admitted. My son’s doctor sent over an order.”

We waited for a nurse to come get us and were brought into a room.

At this point I was getting nervous and Sawyer could feel it.

Let me preface what happens next with this…..we have only had a few bad experiences with nurses in the hundreds we have encountered.

We were brought into our room and the nurses began asking me a flurry of questions. “What does he eat? What are his meds? What kind of bed should we get him? Does he need a cover for the bed?”

I answered as best I could as they repositioned him to begin putting on the EEG probes for the second time that day.

We were stressed we were hungry and we were emotional.

Sawyer was very upset about all of the poking and prodding he was encountering.

He also wasn’t getting adequate sleep due to the spasms so he was sleep deprived.

My poor little man was screaming his head off while they put on the EEG probes and held him down for an IV.

I don’t remember exactly what I said while he was screaming but she said to Sawyer. “Your poor mom.” I know he was being difficult but I also know he was scared and stressed and barely over a year.

It felt like a punch to the gut after all we had been through.

My reply was “Well he barely survived multiple infections so we are just lucky he is here.”

Fast forward 48 hours and he had medicine under control and his EEG was looking better.

We had a good dose for him and we were heading into discharge.

Our neurologist took us into a consulting room and brought up all the scans for us to look at.

She explained that children with Sawyer’s level of brain injury rarely develop past 6 months in age.

They don’t ever speak, walk, or use the bathroom on his own and will need life long care.

We were floored, we had no idea that this was his prognosis.

In the hospital the doctors didn’t seem to want to tell us.

They skirted around it and I understand why but our neurologist was still shocked we were not prepared for this.

The one thing that Ryan and I have always been good about is not giving up and remaining positive.

I told the doctor that if this was the case then we would love him no matter what.

She knew that but wanted to make sure we understood the level of care that Sawyer would need in the future.

We moved on to discharge with medicine in hand and very strict instructions on medicine and a scheduled follow up with our neurologist.

Where we are now will be in my next blog.

Did you know that infantile spasms only effects one out of a few thousand according to epilepsy.com?

I am spitting this fact out to you because Sawyer was one of those children.

We had no idea he was having seizures.

I decided to set up an appointment with neurology to get an idea of what we were facing with Sawyer’s brain injury.

It was something I advocated for because I am a planner and I wanted to know what to expect.

I remember calling to go over the questionnaire with our neurology nurse before we set up our appointment.

One of the questions was is he having some repetitive or jerking moments.

I remember saying “No, he seems totally fine.” I then added “He is doing this new thing where he is reaching over and over for something it’s super cute.” Thankfully the nurse said “Well given his history lets just set up an EEG to rule them out.”

Thank God for that nurse. I thought it was just another step.

I had no idea it would be life changing.

I remember going into the appointment and talking to my mom who was babysitting Sawyer’s twin sister at the time saying “I’m sure its no big deal, I will be home in a bit.”

Sawyer was very grumpy that day and it was stressful getting the probes on but once we got them on I grabbed my book to sit and read while holding him.

Forty five minutes later they came in and said they are stopping the test early.

I assumed that this meant he was fine and we would be going home.

I was brought into a patient room once Sawyer’s probes were all off and the doctor came in and sat down with all the paperwork.

“Your son is having Infantile Spasms.”

My stomach dropped. What does this mean? What do we do? How to we stop them and what causes them?

My mind raced but I stayed calm as I typically do in an emergency.

She said “I will explain more at the hospital but you need to drive him over to be admitted now. These are considered an emergency and he needs to be admitted now.”

WHAT? Is this real? That cute reaching thing he as been doing for 3 months isn’t a cute reaching thing?

The neurologist explained that these are a rare form of seizures in infants and considered an emergency and we need to get them under control.

“Do you want an ambulance or can you drive?” (She must have seen how confused and shaken up I looked.)

Ummmmm….. what??

“No, I can drive just tell me where. He’s safe in the car on the drive over right?”

“Yes, he will be fine, just go straight there.”

The journey of our hospital experience and official diagnosis will be in my next blog.

Recently Quinn has begun speaking for Sawyer.

She will say “He says yes.” or “He says no.” Sawyer is non verbal but is VERY good and his non verbal communication.

She can read his facial expressions. He does have an eye gaze but he’s learning to use it still so we often lean on the communication that he can use most consistently.

It’s very sweet to see her interacting with him in the best way she knows how.

He is very different than her. He can’t speak to her but he has feelings like her and I know she will some day be fiercely protective.

There are many times that Quinn sacrifices her happiness or immediate gratification because she has a brother with special needs.

Her life is truly shaped around Sawyer and many times we have to say no to things because of Sawyer.

I am not sure what the best solution is, do we tell her its because of Sawyer or to we make something up? We often times choose to be honest and explain why we can’t go outside or participate in something.

Quinn does not seem to show her frustrations toward her brother. She accepts them.

I believe whole heartedly this is because not only is she a compassionate kid but also we strive to make up for the sacrifices she makes.

We decide to do something fun inside the house if we can’t go outside.

One parent will take her for a special outing if for some reason we can’t go as a family.

She was allowed more screen time and special field trips and treats for being so good during all of his therapy appointments.

It’s a tough job as a parent to balance and it is even tougher on Quinn.

The key to keeping things running smoothly is treating each of the kids as individuals, providing them things to do separately and together and teaching empathy and understanding.

It’s not often that Sawyer has to sacrifice for Quinn but he does have to sacrifice for himself and although this isn’t something that Quinn can understand now, she will in the future.