This has been a question that many communities are grappling with for several months.

For us, we’ve been grappling with it since the pandemic began. On one hand we want our kids to enjoy this holiday and have some normalcy in the midst of this crazy pandemic, on the other hand we want to make sure that our kids and ultimately, we as a family stay safe.

Recently, I asked our neighbors if we could compromise for Halloween. What if we all put buckets of candy at the bottom of our driveways so that our kids could still collect candy but we aren’t walking up to people’s front doors. Our neighborhood quickly agreed. I think in a time like this it takes compromise, understanding and teamwork. It doesn’t pay to have a fight with your neighbor when lives are at risk.

What pays is understanding and love between each other.

My husband and I have taken things a step further. We have decided to have one of us collect the candy for our children and then we will be sanitizing the candy once we get home. It’s crazy that we even have to think about these things but with so much unknown about this virus we would prefer to be better “safe than sorry.”

Our kids are four and have been looking forward to Halloween since last Halloween. Quinn especially is rarely caught without a costume. She often is in a minimum of 3 costumes a day and this year is especially fun because Sawyer has chosen a costume.

Over the past few years he has just matched his sister but this year we were able to give him a couple choices and he picked one. It wasn’t the exciting one that I wanted him to be but the important part is he chose it and it makes him happy. We even chose a costume to match his service dog. I don’t know if we are making the right choice but I know that we are mitigating the circumstances we are in the best way that we can.

Sawyer needs both of his hips fixed. One is totally out resulting in a 4-inch difference in his leg length. We have been battling with this decision but after meeting with all doctors and therapists they agreed it’s best for him. We decided to proceed forward and schedule his surgery for January 2020.

In December Sawyer got influenza B (despite his flu shot), pneumonia as a result of influenza and GI upset due to the pedialyte we had to give him to keep him hydrated. This resulted in not only a 3-day hospital stay but also a loss of 5 full pounds. He was very skinny and we could not imagine putting him through the 7 hour surgery and 6 week body cast that followed for his hip surgery.

We knew it was the right decision and selfishly I was relieved. I was anxious about the surgery.

Fast forward to this month and we finally got a new surgery date. We have been quarantined since the pandemic, avoiding social outings and being overall very careful. We are beginning to see pain and adverse effects due to the hip being so far out. The surgery was scheduled for October 2nd, notice I said “was”. I spent 3 weeks not sleeping, being extremely anxious and stressing about the surgery.

Four days before his surgery Sawyer’s twin sister, Quinn, came down with a cold. We not only kept him away from sister as much as possible but we sanitized before we got close to him after touching her. The day before his surgery he came down with a cold. It’s taken 10 days for him to get over it and unfortunately, we had to cancel surgery AGAIN.

It’s been a stressful and emotional rollercoaster.

We go from feeling extremely anxious to relief to stress to being anxious again. It’s not easy but we are trying very hard to look towards our faith and as our doctor said “Sometimes it’s God’s way of saying not to.” We are planning on rescheduling his surgery because we are finally seeing some pain and signs that it is necessary, unlike a year ago. Things will happen when they are meant to and often times the hardest part of being a parent is letting go and holding on to faith.

To be honest, I am terrified. I am constantly carrying the worry that my child is going to die. When he has the aggressive and prolonged seizures like tonight I think “Is this it?”.

I know it isn’t healthy and I know it’s also normal. I have to work hard to remain positive so that I don’t end up an anxious mess. I have to keep my cool so I can remain in control for Sawyer.

Our night was like any other. We got both kids in bed, my husband headed to the gym and I climbed in bed to relax. I played on my phone like any other night for too long and decided I needed to put it down and turn on my monitor.

Typically, when Sawyer is sleeping we don’t hear much other than his ocean sounds on his echo. Tonight when I turned it on I heard snorting. When I looked at the monitor he didn’t look quite right. I rushed into the room to see if he was responsive.

I immediately knew it was a seizure.

I called my husband and told him to come home, called my neighbor to come over and called 911. I administered his rescue meds and waited.

My cool calm and collected neighbor watched for my husband, handed me things as I needed and let all the police, fire and EMTs in the door. She was a Godsend. She helped keep me calm and I quietly took charge of what was necessary. I can’t imagine being totally alone in that situation.

Once they arrived I felt as though I could breathe again. I knew that whatever happened I had professionals around me. Sawyer’s seizures are extremely hard to detect so I had to explain that he was still seizing and these professionals looked to me for guidance.

Each time he has a seizure I look back and think of what I could do differently, and I wish I had administered the second rescue med when the ambulance was on its way. If I had, he may not have needed to be bagged and gone on so much oxygen but who knows.

Each time he has an event like this I relive the days in the NICU where he almost didn’t make it.

The emotions and feelings come rushing back. I often question why he has to go through all he does. Why does he have to have gotten so sick? What did I do to deserve to have a child that I have watched suffer on multiple occasions? It’s hard not to go into my dark hole, but I don’t, because he needs me.

Finally, tonight, I was walking into the gas station to get some popcorn I had promised to bring home from the hospital. I thought to myself: “I look awful. My hair is dirty and my clothes are disheveled. I have bags and dark circles under my eyes.”

People may look and see a disheveled lady and automatically judge (yes, I think my shirt was see through) or they can look deeper with empathy and choose to smile.

We need more empathy in this world. We need more people who instead of judging immediately, choose to understand what it feels like to be that person and respond with kindness. Choose Empathy.

Our lives are like a beautiful storm.

It causes destruction, has very scary moments and often times we are out of control. However, it is beautiful because we can see so many beautiful moments within the storm. Sawyer’s laugh can light up the room and his perfectly timed pranks on us. When Quinn makes him belly laugh or pushes him in his wheelchair around the room.

There are so many special needs parents out there and each of our days look different but are equally difficult. I know that many people reading this blog are closely tied to someone who may have some sort of special needs. It can be challenging as a parent and caregiver.

There are days that are exhausting and stressful.

So many days we find ourselves scratching our heads trying to diagnose what may be going on with Sawyer. Is it his shunt, is it his GI system acting up? Some days we have been up most of the night and are just barely surviving.

On the other hand the days that we are well rested and we watch Sawyer laugh and giggle with his sister is beautiful. It makes those tough days feel so much sweeter. When he reaches milestones, we weren’t sure he would it makes the long days all feel worth it.

We have a big “elective” surgery coming up that has me stressed and anxious. My mind keeps circling the drain of the what ifs and the fear of the unknown. I can’t read my gut because there are so many emotions involved. This year and the pandemic has not helped my anxiety at all.

Logically the surgery makes sense and we have not seen a doctor yet that has said we shouldn’t do it. They all agree that we should do it and it’s worth a shot for the first time. That makes the decision a little easier but no less scary. All that I can hope is by the end of the recovery we can see the beauty in the storm. We will be able to see a better and improved quality of life.

Sometimes I feel so isolated. Our situation is unique and it’s so much different than our friends.

I am an extrovert by nature. I thrive off of social interactions and friendships. I love my life, I really do but only having one babysitting option nearby is hard.

Through the four years of having a child in and out of the hospital, we have cancelled many social gatherings. We have backed out last minute to dozens of parties, graduations and showers. It’s been very hard on our friendships and we have lost friends that just don’t understand. It’s been a great indicator of who your real friends are.

Our very close group of friends have a yearly gathering at the lake this weekend and due to the pandemic and our need to be extremely careful we have to miss out. In fact, we have never made the full weekend since we have had kids. It’s one of many that we will miss in the future I am sure as well. Life goes on and we have been adapting for years, taking turns going to events and socializing. However, going out together with friends is very rare, as in maybe once a year.

You see, my parents and my sister in law are the only family that are capable and willing to take care of Sawyer.

If Sawyer didn’t have unpredictable reflux episodes and hard to detect seizures we could have more options. Unfortunately, my parents live 3 hours away and are full time care takers of my grandma with dementia.

This means we are left with one option for babysitting and we often call on her for appointments and various help so we do not call on her for date nights or nights out with friends. I know she would be more than willing. I know she is reading this thinking “I am going to give them a night out” BUT she can’t do it all.

I know that having a child that has so many unique needs makes it hard to carve times for date nights, let alone socializing. When you throw in the current pandemic and we are down right isolated in our friendships and even our own relationship.

Throughout these past 4 years we have tried to adapt our date nights to simply enjoying wine on the porch after the kids go to bed, watching a favorite show together or playing games. The kids sleep schedules haven’t been ideal so we squeeze them in when we can or aren’t too exhausted.

The one thing that we are very good at is remaining positive and finding laughter in the small moments. It’s all we can do for now but this too shall pass and I know we will miss these days of the kids needing our constant attention.

There’s an “average” four-year-old boy in there.

Today in the car Sawyer “sang” along to all the frozen songs. He had the inflection and timing and tone just right. He sang right along with me, but they weren’t words.

Sawyer’s cerebral palsy seems to have affected his verbal language, but it hasn’t stopped him from acting like the typical four-year-old boy. He is VERY good at nonverbal communication. He answers questions with a smile or a frown and gets so excited to hear and see certain people.

He loves farts and potty language. He loves when we burp or accuse him of farting. He is a typical boy inside; he just looks different on the outside. He has a feeding tube, does not walk and is nonverbal.

For us, we know who he is and what makes him laugh but for others, especially kids, they struggle to look deeper. We usually get a lot of questions about Sawyer. What is the feeding tube for? Why can’t he walk?

We always do our best to not be offended and answer the questions because often they are coming from children.

There are more times than I can count that when I say Sawyer has Cerebral Palsy people respond with “I’m sorry.” It’s a natural thing to say when you don’t know what to say but it is also strange.

For one, it is not the situation we envisioned but it is not something to be sorry for. We feel as though we were chosen for this particular situation. Secondly, we get to see tiny miracles on a regular basis, so we feel so incredibly blessed.

Sawyer does not walk or communicate like a typical four-year-old but on the inside, he is ALL four-year-old boy.

Children like Sawyer force us to look deeper. It’s easy to make a snap judgment but it’s harder to step back and look on the inside. So next time you see a child in a wheelchair, someone with a disability or someone who may be different, model acceptance and understanding. Give them a smile, say hello and let that person know you care.

Empathy, understanding, compassion and acceptance can be difficult to teach a child.

Reading books and talking only goes so far, it’s modeling that can have the biggest impact. We recently moved into a wonderful neighborhood that is full of kids. The parents in our cul-de-sac have interacted with Sawyer the same as the other kids since they met him. He is just one of the other kids in their eyes and that means so much to us as a family. These special parents have never stared or even flinched when he has a reflux episode, which usually includes lots of vomit. I suspect this is why their children have come to love Sawyer. Their parents have modeled the empathy, love and understanding and in turn their children have modeled their behavior.

About a week ago I put Sawyer on his trike and pushed him with the girls while they rode their bikes around him. He laughed and enjoyed being with all the other kids. One of the younger girls that Sawyer has a special connection with observed me pushing him around. After a few minutes she approached and asked “Can I push Sawyer please? She had so much fun pushing Sawyer and he gleamed with delight. Soon the other girls noticed and asked if they could have a turn. They all had a blast pushing him and Sawyer laughed so hard we had to stop. A projectile vomiting episode could have easily ruined the moment.

The girls often ask me questions about Sawyer, and I am so happy to answer these questions. His little “girl” friend is the boldest with her questions. “Why he have to ride his bike like that?” “Why he has to stand in the wheelchair?” “Why he has a feeding tube?” Each of the girls will listen attentively while I explain and sometimes ask follow up questions.

Sawyer is so lucky to have these friends nearby that he can interact with while we are avoiding public situations.

He will have a core group of friends to look out for him when he attends school, this alone brings tears to my eyes. He will have strong girls who will wave to him in the hallways and act as big sisters on the playground.

These kids will in turn grow up with a child that is different than them. A child that requires patience and understanding, a child they will learn to communicate with differently. They have already asked many questions and continue to ask questions about him every day. I do my best to answer their questions, but I know that his growing connection with them will have a long-lasting effect on them.

As adults we can change how children with special needs are seen. We are raising the next generation and can help change the world for the better by simply modeling empathy, understanding and patience with everyone around us.

There has been a huge push for mental health awareness in the past few years and rightly so. It’s important to recognize the internal and hidden battles that people face. We can’t possibly know what it is like to be in someone’s body. They may look totally fine on the outside. They may even tell you they are fine, but they could be battling something very hard.

I am a part of many special needs groups in my community. I see mental illness come up on occasion but I don’t think that it is talked about enough.

Having a special needs child comes with its own unique challenges that is different than raising a typical child. Raising children is a challenging and exhausting job. Raising a special needs child is especially challenging emotionally. If you throw in a traumatic birth, pregnancy or NICU stay, then parents are facing even more challenges.

I have written about this before and many of you know of our story, but I will give you a short run down if you haven’t read it before. Sawyer and Quinn were born at 27.2 weeks and were in the NICU a combined 154 days. During that NICU stay they faced many challenges. Each of them became gravely ill and were given small chances of survival.

There were days that we did not know if they would survive. We were forced to make quick and lifesaving decisions on many occasions. At one point they put us in a hospital room and told us not to leave the hospital. Once both of the kids were on their road to recovery and it looked as though they would make it I began having nightmares. I had horrible nightmares and would wake up scared to go back to sleep.

This is how my PTSD diagnosis came, thankfully a nurse saw the signs.

PTSD can come out in many ways. For me, I began having nightmares and was unable to sleep. I was having anxiety during the day and felt like I was drowning. This is common with PTSD and we see it too often in the NICU. I know since then I have been unable to shake the symptoms. I will get to a good spot and then something will come up medically and cause nightmares and anxiety again. I have found the perfect therapies that help me (blogging being one) but each person is unique. What works for one may not work for another.

Parents of children with special needs can go through a grieving process. For me, it is when Sawyer is surrounded by children his own age. I notice the differences and think of what could have been. Did I ever think that my child would need a stair lift? Wheelchair? Speaking device? Feeding tube? Absolutely not. It can be a tough pill to swallow some days.

Thankfully I am able to prevent myself from spiraling out of control. I snap back to seeing what I do have. I focus on the life before me and the joy he brings. He has accomplished so much and he is ALIVE.

I feel fortunate that I have this ability and the help to keep from spiraling but it is easy to get sucked in. I know that I am not alone in this process. I know that YOU are not alone. Many may be feeling the same way you are and there is no reason to be ashamed. Reach out to someone to talk, email me, or talk to a doctor. There is nothing to be ashamed of feeling the way you are.

Remember, YOU ARE NOT ALONE.

I am often told how good of an advocate I am for my children. I spend hours on the phone finding the best possible care and best doctors. I do not give up until I have the best care for Sawyer. I know this is true and it is in my nature.

I am also an English-speaking white person. I have experienced no racism and I have no language barrier that is stopping me from connecting to the doctors and case managers.

In my small experience and upon speaking to therapists there tends to be a very big disconnect between families that speak English and those that don’t. I do believe that it is more than a language barrier but a lot of it is the language barrier. If you do not know the right questions to ask you often aren’t offered the services that are available to you. I don’t want to place blame on social workers or case managers. There are many, many out there that are wonderful.

I have personally had some wonderful case managers, but my friend has had opposite experiences.

She is Latino and English is not her first language. She has two daughters with special needs; including feeding tubes, cerebral palsy and had no help. When we first began talking she explained that her husband was working 16 hour days in order to keep up. She was unable to work because there were no daycares that would take two children with special needs and feeding tubes. She also could not hire a nanny because it was too expensive. They were in a very small home that was not adequate, but they could not afford a bigger home. This left her and her husband working around the clock and their family was suffering.

When we began to talk about it, I mentioned that there are county services that would give her the help that she needs. She would be able to get nursing help as well as some income support so her husband would not have to work so much. She said she had heard she may be able to get some help but when she called them, they told her she needed an interpreter. She said they didn’t seem to understand that she could speak English but needed things explained a couple times so she could fully comprehend. She explained they told her an interpreter was hard to get and took a while. She felt defeated and gave up.

This INFURIATED me.

I understand that case workers and county workers are busy. I understand that they have a lot on their plates but why not take the time to explain and empathize instead of brushing off? Why wouldn’t you listen and try to understand? This family was exhausted, stressed and feeling defeated and yet, they couldn’t get help. It was at that point that I reached out to my case worker. She is a wonderful person that truly loves what she does. She works hard to understand and spend time getting to know her families. She was able to give me the exact language and questions for my friend to ask.

Once she had the knowledge in her hands, she was able to facilitate the help and assessments she needed. She now has nursing care, was able to move to a bigger home and her husband is home more to spend time with his girls.

This situation is not outside the norm.

I suspect that this happens quite often and many children with special needs are unable to receive the care they need because of a language barrier or even a racial bias. The reason I am sharing this with all of the wonderful people who are reading this is because I am hoping it create awareness and change. If you know another parent of a child with special needs, reach out, help them, see if they need help navigating this tough and unique world. We are all in this together.