Play, Play, Play!

Do you ever find yourself mindlessly scrolling on your phone while your child plays? I know I have and during this time I am working on putting my phone down, engaging with my kids and playing with them.

The twins are 4 now and they won’t be asking me to play with them much longer. Sometimes my daughter dutifully reminds me to put my phone down, (engage the mom guilt).

In a world where technology is at our fingertips, I am finding it increasingly difficult to remain present. When my phone pings with a text, email or notification I want to look down immediately. I know I am not outside the norm in this.

There is a lot of science behind the impulse and endorphins of picking up your phone when you hear a notification. It is something that many of us have to actively work at NOT doing when we hear the notification. I am even guilty of picking it up mid conversation with someone. It’s almost second nature and it shouldn’t be.

Technology has been a huge help to us as a family.

Sawyer’s communication as well as life saving devices rely on technology, but the simple act of play should not. As a family we are having phone free dinners. We are talking and enjoying our time together. We ask questions about our day and discuss the highs and lows. It’s only about a half hour but it makes a big difference to us and my daughter.

We have begun to put our phones down and engage in play with her. It’s amazing how much you can learn through play with your child. Kids are always listening, and they are looking to us to be role models.

“With this level of brain injury, children often don’t develop past 6 months.” our neurologist explained when we were called into a conference to discuss Sawyer’s infantile spasms.

She was surprised that not a single doctor in the NICU had wanted to explain to us what his brain injury meant. It was all very vague and “we don’t know” “some sort of cerebral palsy.” It wasn’t until our we met with a new neurologist that she explained what his brain injury meant. I understand now why they were so vague.

Hope is easy to lose and hard to gain. It is something inside us, a feeling, of trust that something will happen. As a parent or caregiver of a child with special needs science is what drives many decisions, but hope isn’t something that can be measured.

When a parent’s hope for their child is taken at such a young age it can so easily change the outcome of their lives. If a parent is told their child will never walk, will they fight every day to change the outcome or will they accept it? There is no wrong or right answer because parents of special needs children each have their own unique journey.

The same neurologist that told us the outcome of his brain injury was the same one that said, “Research shows that if a child can roll from back to belly by the time they are four, then they will walk someday.” Just after Sawyer’s fourth birthday he did just that.

He surprised us and rolled from his back to his belly all on his own! We were so excited to see him hit this milestone. He has consistently amazed us with his perseverance and willingness to keep trying. This year alone he has tackled riding his trike independently, driving his own jeep, taking consistent steps in his kid walk and even spinning himself in his kid walk to roll down the driveway.

Hope is a wonderful feeling that we are so fortunate to feel. It helps us achieve more and get through tough times. We have seen first-hand how continuing to have hope can have a positive outcome in our child’s life. Continue to Hope and continue to smile, because they are some of the only things we can control.

My husband and I recently had a discussion about how difficult it is having a child with such complex needs. It’s NOT easy by any means and I believe with my whole heart that we were chosen for this. We were chosen to raise a child like Sawyer. We advocate and work well together to find the absolute best solutions for him. That does not mean we are perfect, in fact we are far from. What it does mean is that we work hard and never give up trying.

Sawyer has had a cough and vomiting upon waking up for YEARS. He has had what was classified as “reflux” for years. As a baby he had what we feel is true reflux. We do believe he has reflux still but we were getting no relief from the reflux medicine. The phlegm that he produced after nap and when he woke up or laid on his back on the floor too long was a lot. We have brought this up at multiple doctor’s appointments and they have tried multiple things.

He’s been on all kinds of medicine for this problem with no relief.

It’s been a long journey and lots of throw up. We kept thinking, there has to be more. At one point they allergy tested him and said he had no allergies. It was hard for me to believe because I suffer from very bad allergies.

After throwing up for the third time last Friday I called my allergist. I had hit my breaking point and I decided that getting him tested on my own to rule out allergies. This was never brought up at any of the dozens of doctor’s appointments, even pulmonology.

It’s frustrating for me as a parent because it’s easy to lean on the providers, it’s their job, they know all. It feels like rule breaking when I don’t listen to them or question their judgment. I have done this in the past and gotten the answers I needed but it goes against my nature.

Yesterday at the allergist, Sawyer tested positively allergic to almost every single thing that I did.

I cried as the doctor showed me the results that I saw on his arm. It was a relief to have answers but I was kicking myself for not going in sooner. He is not only allergic to outside pollens but dust mites, dogs and cats. We have to change a lot in our environment at home as well as clean like a crazy person. It’s not going to be easy and it adds more to our plate but we hopefully have more answers and his quality of life will be much better.

As parents of children with complex medical needs we often spend times scratching our heads, trialing new things and kicking ourselves when it’s the easier answer. I carry a lot of mom guilt but I have to give myself grace and remember that I am doing every single thing I can for him to give him the best life I can.

Sawyer and Quinn turned four on the 16th of May. It’s easy as a parent to reflect on the past when your child has another birthday. I found myself looking back through photos and videos and remembered a conversation I had with the neurologist shortly after Sawyer was diagnosed with infantile spasms.

As we sat in the room looking at the scans she explained that Sawyer was having seizures and how we would control them. She also explained the brain damage that he had and what to expect. She asked if anyone had explained to us before the level of damage he has and what kids with injuries like his typically are like.

We may have been told but all we remembered were the NICU doctors explaining that he would have some sort of cerebral palsy and not knowing the future.

We did not remember anyone explaining to us the level of injury or what we could expect.

She explained that Sawyer had severe damage to both his right and left hemispheres. She said what she often sees is children with this level of brain injury do not develop cognitively or physically past 6 months of age. I want to say that we cried and we were devastated but in that moment we were just pushing for his survival and to get past the seizures.

This was just another diagnosis for us.

In fact, I didn’t remember we were told this until 3 days ago. I don’t know if this was God’s way of protecting and comforting me or my way of coping but either way, I know faith had a role.

We have never let that number stand in our way or define Sawyer.

He has continued to grow and develop, and we are finding how intelligent he is. He had a trial with an eye gaze board which tracks his eyes and speaks for him. Sawyer was able to identify everyone around him and begin telling us things he wanted.

We always knew how smart he was but this was proof for all of us. Sawyer still isn’t walking but he is taking steps in his gait trainer. He rides his bike by himself and on his birthday, he figured out how to control his very own jeep, with a parent steering of course (HAHA!).

The one thing our family lives by is “never set limits”. Believing your child can reach their absolute potential and giving them the tools to do so is one of the most important jobs as a parent that we have.

Enough? That’s the biggest question for me. Am I doing enough? Did I do enough today? Had I done more a year ago would he be in a better spot? My personal biggest struggle is trying to divide the line between living life and keeping a schedule.

Do I let myself feel guilty if we are outside playing all day and Sawyer doesn’t get his stander or normal physical therapy? If this happens too many times in the summer, am I setting him back?

What is enough?

These worries are always in the back of my mind and it can be stressful. I am sure that I am good at hiding the guilt that I feel and the worry on my shoulders, but it’s there. It can’t be healthy for me to carry that burden; however, I think many mom’s do.

We are constantly carrying the mom guilt and wondering if we are doing enough for our children. When Sawyer’s nurse is here for the day, I feel relief knowing that I can just be mom, but is that wrong?

Recently I hurt my back. The pain was extreme, and I could not lift. There were a few days that I was on my own with both kids and Sawyer didn’t get any physical therapy and spent a good portion of the day on his back. There is nothing I could do about that because it hurt me to move so I wasn’t able to move him.

Yet, I still worry that he didn’t get enough therapy and if I remained diligent and consistent then maybe his outcome would be different. I hear so many success stories about kids who weren’t supposed to walk.

I have heard from doctors that “highly motivated parents have better outcomes for their kids”. What does that mean exactly? Am I highly motivated?

I advocate for him on a daily basis. I live and breathe thinking how I can make his life better. I know these things but my fatal flaw is feeling that I can always do more. Internally I often forget to remain positive and focus on what I am doing.

This is something I will continue to work on because I need to be my best in order to give my best.

Two days ago, I went to pick up the dog from the vet and was gone an hour! Did the vet take an hour? Of course not, but in this time of quarantine I needed a breath. We are all navigating this time differently.

For me I am the primary caretaker, so I hear “mom” all day long I can’t even take a shower alone. Now don’t get me wrong I absolutely love my kids but when I have zero time for myself I take advantage when I can. Upon picking up the dog from the vet I drove to grab a tea from a local coffee shop (drive-through of course). I then went to a pet shop and wandered around with the dog and talked and told my life story to the employee there. Did he need to know my life story? No. Did I need to tell my life story? Yes! I needed some interaction with somebody in person besides my husband and kids.

I didn’t really tell him my life story but I know I seemed desperate for attention.

Some of us are using this time to clean closets, work on themselves and work out. Some are binge watching TV, eating Cheetos and trying not to have a mental breakdown. I definitely fall into the latter category. Does this make a failure? Not in any way. It is the way that I am surviving this anxiety. Sure, I am eating out and having the cheeseburger I would normally avoid but I am searching for something to make me feel good. Now is not the time to judge. Now is not the time to point fingers. Now is the time to understand that we are all different and cope different ways. Now is the time to show empathy for those who may be having a hard time.

There is nothing more heartbreaking during a time like this than to see fights break out and people begin to point fingers at each other. Our lives are vastly different but we are all human and have human emotions. Do what feels good and is right for YOU and your family.

The first few weeks of this quarantine I was blown away with the kindness of others and the love people where showing each other. I have noticed that this week the tides have turned (at least on the news and social media). When we quarantine we protect those who are vulnerable. We live in a selfish world and for a few weeks people unselfishly stayed home and took precautions. This was to help children like my son.

To all of you who did and will continue to do so, THANK YOU.

For all the amazing people working on the front lines, the people who deliver my groceries and my son’s supplies and medicine, THANK YOU. This is a changing world and I hope that we can come out of this with more empathy and humility.

One of my favorite celebrities gives the best advice at the end of their show, yes “spay and neuter your pets” is important (thanks Bob Barker) but more importantly Ellen Degeneres says “Be kind to one another”.

These are words I try to live by.

I think I have always been this way however; I am much more empathetic and aware after going through the NICU experience with my twins. There is something about facing death and watching miracles that changes a person.

Thankfully you don’t have to face death in order to choose kindness. We are all unique passengers on this train of life. We all have unique experience and feelings. There are always two sides and feelings involved in each story. It isn’t always easy but trying to understand each side is the root of kindness. We can’t possibly look at someone and see the underlying pain or feelings they are carrying.

Now more than ever we need kindness in this world.

Neighbors helping neighbors and friends supporting friends. We have had friends and neighbors go grocery shopping for us, bring us coffee and routinely check in since this pandemic started. We are working hard to do the same. 

When we do have to get out, we reach out to neighbors and ask if they need anything. We offer coffee if we are at a coffee shop. I have been supportive in the ways that I can. I wish that I could do more but with a child and nurse that are immune compromised my most important job is keeping them safe.

I hope that during this time society becomes more humble, realize what is important, slow down and cherish family time.

Stay Healthy Everyone!

When your child is given a diagnosis, it’s natural to want a crystal ball to see the future.

Sawyer was diagnosed with cerebral palsy as an infant after his brain injury. I asked so many questions of the doctors and they answered the best they could. What will this be like? Will he walk? How will this affect our lives? What does this mean for his future?

The truth is, no doctor has a crystal ball. They aren’t able to look into the future.

They can only make guesses on what they have seen in the past. They don’t know each child or how their brain will work. They don’t know the personalities of each child or their level of perseverance. One surgeon said he sees kids with Sawyer’s injuries in clinic walking and seemingly normal and other times he sees kids with less severe injuries that are in wheelchairs. He said his brain is complicated and he does not know how or why it works out that way since the brain is so complex.

I may have told you this before but when we told our nurse friend about his brain injury she simply said “It’s not a terminal diagnosis. A friend of mine has a child with Down’s Syndrome. He is a wonderful kid and he’s learning just like every other kid, but he is on his own timeline. You will get to see Sawyer accomplish things and be even more excited than you would a typical child.” This was so comforting to hear and rings true today.

Yesterday, Sawyer learned how to ride his trike on the same day his sister learned how to ride her bike.

I would have NEVER guessed a year ago that he would be pushing himself and pedaling down the driveway next to his sister. He does have to work much harder at this than his sister, but he does it with a smile. The twins were riding bikes together. Even now, I am brought to tears.

It’s HARD having a child that isn’t typical.

It’s hard not to think “What if?”. I sometimes see boys his age running around, and I often wonder what he would be like. Would he be running and doing boy things, or would he be the exact same personality he is just mobile? It’s hard to picture Sawyer any other way than he is. He is hard working, smart, funny and so chill.

Even though Sawyer isn’t what we pictured when we were told we were pregnant with boy/girl twins he is exactly how he should be. He is our miracle and we have a unique opportunity to watch tiny miracles each day. I am thankful I can’t see the future; each accomplishment is a celebration.

Sleep. Oh, how I miss you.

Sleep. How I wish I could have you back.

It’s expected when having a baby, you will lose sleep. When you have twins, you expect to just not sleep. They prepare you to reach out for help and they prepare you to nap as much as possible. I wasn’t prepared for 4 years later to only sleep through the night once a week on average.

Sawyer is on a pulse ox at night due to his epilepsy. He also struggles anytime he has a cold causing his pulse ox to go off all night.

My daughter has been waking up every night for a year. She runs in our room and wants us to put her back to bed. This started when we switched her out of a crib, but we aren’t sure why this caused such a problem.

When we took her to the sleep doctor, I listed off everything we have tried and he said “it’s sounds like you’ve done everything”. Let’s try changing around her schedule with sleep regression and change her bedtime to 9:30. 9:30?!?!?!?! Is he insane?

I already feel like I’m dragging through the day with zero time to myself, now I am losing that blissful hour before bed to read or go to bed early? Well, we tried it and meticulously logged her sleep patterns and times she woke up. Nothing worked and almost a year later she is still waking up at night. His final suggestion was anxiety medicine.

We decided to forgo the anxiety meds and deal with the lack of sleep.

Although sleep is lacking in this house, we know it isn’t permanent. At least that is what we are telling ourselves. HAHA! When our daughter wakes us up, we take the time to tell her we love her and give her a kiss. We smile and act as though it isn’t a big deal because some day, in the near future, she will be kicking us out of her room so she can talk to boys.

Sawyer will likely always be on a pulse ox, but he won’t always be so willing to snuggle in the middle of the night. My new motto, especially in times like this is

“Embrace it. It won’t last forever.”