This is undoubtedly a scary and hard time to be living in 2020.

The uncertainty alone can cause panic attacks. Doctors are prescribing anti-depressants more than ever before. I spent the first several days once the virus hit the US in a state of panic. It began to affect the whole family. My husband and kids noticed the mood change and I felt frustrated with my short temper. This is not the usual me. Of course, as a parent sometimes you lose your patience but overall, I tend to be upbeat and positive.

I stopped watching the news and slowed down my brain as much as I could. I found that stopping the news and embracing our time at home was what I needed. I began making my to do list of things I have been meaning to accomplish. I sat down and made list of activities that I could do with the kids.

My husband and I came up with the best plan to keep our family safe.

It’s not often that we are forced to slow down. Our lives (especially with kids, let alone kids with special needs) are incredibly busy. We rush from one thing to another and from appointment to appointment. We rarely have time to accomplish things on our to do list at home and end the day feeling frazzled. This is the time to relax, enjoy family time and get some spring cleaning done.

I am a busy body. I tend to fill my schedule to the max and then push things I don’t accomplish to the next day. I recognize this in myself and I come by it naturally. My grandmother was the same way until her dementia began to set in.

This slowing down has not been easy for me.

Even now, forced to be home, I still find myself filling up my schedule with hopes and dreams for the day. I have a lot of things I want to do but I know I won’t be able to do them all during this time. I know this because my to do list, like many of yours is 100+ long.

As I sit and stare at our blank calendar for the month, I realize that now is the time to embrace it. One year from now when we are rushing around and staying so busy, we feel frazzled we will wish we had the time to slow down. We will wish we were told to sit and watch Netflix and have forced family time for months. Embrace it.

On December 26, 2018 Sawyer was sleeping in my arms when I noticed he was drooling.

I was super confused by it and a few seconds later his lip began twitching. I called my mom over and tried to get him to respond to me.

We had never seen a seizure like this and to be honest, I was confused.

I yelled at my husband to bring the rescue med, prepared and administered it. It didn’t work and after speaking to the doctor we were instructed to call 911.

On the ride to the hospital he continued to seize but the EMT was hesitant to administer a second rescue.

When we got to the hospital they laid him down and he crashed. He had been breathing too shallow for too long and they had to intubate.

It was one of the scariest moments of my life. He was surrounded by doctors and they had to cut off his shirt in order to care for him appropriately.

Thankfully, once he recovered a few hours later, he was pulling on his tube and they extubated.

The reason I am sharing this story is because when I voiced my concerns about the type of seizure and how hard it was to detect, the doctor actually told me there was no way of preventing it from happening at night.

I explained that if I wasn’t holding him he would have died because this seizure didn’t stop without multiple rescue meds.

Again, he told me there was no way to detect or prevent it. I was FLOORED. Thankfully the nurses asked me several times what I could do and said they wouldn’t release me until I was comfortable.

The nurses told me to contact his complex care doctor and get oxygen and a pulse ox delivered to our home immediately.

That way the pulse ox could detect it and I could administer oxygen until the EMTs arrived.

On October 13 last year, his pulse ox caught his seizure. I was able to go in, administer meds and call 911.

They gave a second med in the ambulance and we were rushed to the hospital.

He was not intubated, he was only observed for 24 hours. Our neurology team helped diagnose him with prolonged and aggressive seizures, increased meds as well as gave us a new seizure action plan.

We now give rescue meds immediately and call 911. Had I not advocated, he wouldn’t be here today.

It is EXTREMELY important parents advocate and it’s equally important that doctors offer SOMETHING to ease the mind of parents.

I am so thankful for our AMAZING neurologist who not only caught his infantile spasms but was also the one to talk to us about SUDEP (Sudden Unexpected Death by Epilepsy) so I knew the questions to ask when he had his “new“ seizure.

As a parent advocating can be extremely hard. You feel as though you aren’t the medical expert, you aren’t qualified enough to make these decisions.

I know exactly how that feels but always remember that YOU are the expert on your child.

You know how their body works, you know how they react and YOU are the expert.

Advocate. Advocate. Advocate.

We had a recent change in our family with my grandfather.

My grandmother decided to put him in memory care. It was the best thing for him, but it was a very difficult decision.

It got me thinking about when nursing care was brought up to me for my son.

For some it may have come as a relief to know that they could qualify nursing, but for me it was hard giving up control.

I felt as though I wasn’t a good enough mom to take care of my own son. I wasn’t sure that I needed it but our early childhood teacher explained to me that would be a good thing.

I decided to give it a shot and I am so glad I did.

It’s hard to give up control and accept help.

It’s hard to rely on someone else to take care of your child, even typical children.

Sawyer has a multitude of disabilities and it’s very scary putting his life in other’s hands.

However, now that we have had nursing for so many years I have found that it’s such a wonderful thing.

I can just be mom. That was a big “A-HA” moment for me.

I didn’t realize I was wearing the hat of nurse, physical therapist, occupational therapist, speech therapist and mom.

I didn’t even think that other parents may not have as much on their plates.

I am a lot like my grandma in the sense I am a busybody and am constantly filling my plate.

In this case, I get to just be mom. I am a different kind of mom because I am still a strong advocate for my son and I juggle many therapists, doctors and appointments but most importantly I could focus on those things and myself during the day when the nurse is with Sawyer.

We are so incredibly blessed to have gained another family member.

Sawyer’s nurse loves our family like her own and considers us family.

She checks in on her days off and I can confide in her any feelings I am having.

She is so much more than a nurse. Sawyer lights up when she walks into the room.

I have so many photos and videos of him laughing and smiling at the sound of her name.

They have so much fun together and work hard.

We call her a magician sometimes because he often does things for her that he won’t do for mom.

It can be very scary and not always easy but sometimes “yes” is the best thing you can say.

In light of the climate we are in right now I felt this blog was incredibly important to write.

Positivity is something that I live by and I want to pass that on to anyone who reads this.

Positivity is hard. Positivity is even harder when you are in a situation that you did not plan nor expect.

My twins Sawyer and Quinn were born at 27.2 weeks. They were both just over 2 pounds and so incredibly small.

We had a very long and hard NICU journey but we survived. Sawyer became so ill in the NICU that he sustained a brain injury and has life long disabilities because of it.

It would have been so easy for me to crawl into a hole and become angry and negative, but that wouldn’t have helped anything.

It would be easy still to be negative and play the victim. It’s much easier to do those things than picking yourself up.

You see, positivity is a choice. You have to wake up each day and CHOOSE to be happy, CHOOSE to fight and CHOOSE to battle on.

I CHOOSE each day to look for the good, even in the worst of days.

My children feel that and the people around me feel that. I want to make a positive impact on this world in whatever small way that I can.

I am not saying that I am a happy and bubbly person all the time.

I have my moments, sometimes I allow myself a day. However, that is all they are.

There are moments I say “Why me? Why us? Why God?” but I always pick myself back up, however hard that may be.

You see, playing the victim and acting as though everything is done “to” you is no way to live.

If you choose to believe that everything is done “for” you and find the good in all situations then I promise those around you will feel it.

Wouldn’t it be great if everyone around you had a smile? Wouldn’t it be great if we had the power to change the climate around us?

Choose positivity. I promise not only will you feel better, but those around you will too.

Prematurity changed me.

As in, I will never be the same after experiencing the NICU and having a child born so small. Quinn and Sawyer came charging into this world at 27 weeks. I hadn’t even hit my “dreaded” third trimester.

After their arrival, we had to wait a week to hold them.

A week to hold the baby you’ve been praying for your entire life. Even at that one week mark we couldn’t hold them together and my husband and I had to flip a coin on who we would hold first.

I held my son Sawyer and it was the sweetest moment of my life. I was overcome with tears and that is when it hit me, I am a mom. I made this two pound human I am holding.

I was so worried I would break him but at the same time I felt strong.

I felt like I could do anything.

A friend hopped on a bus on her lunch hour just to come and document our first time holding our children, for that I will forever be grateful.

When I look back at pictures it’s hard for me to imagine the kids so small. My son’s head fit in the palm of my hand. His hand was as big as my thumb.

We didn’t plan for prematurity, no one does. We didn’t plan for the dozens of complications we had either.

Sawyer and Quinn both ended up with one of the scariest preemie problem you can have, the one they don’t tell you about until you have it.

Necrotizing enterocolitis, an infection of the gut that slowly eats away the small intestines. When they begin to show signs they immediately go onto antibiotics and doctors are put on high alert.

It has a very low survival rate and is extremely hard for these tiny babies to fight.

Sawyer and Quinn had a long hard road fighting this awful infection. Sawyer got so ill that we said our goodbyes as he headed into his first surgery at under three pounds and two weeks old.

When we found out he made it through the surgery we were elated but the surgeon told us “What is left of his gut didn’t look good, I don’t know if he will recover.” They left him open until the next day, OPEN.

It was a terrifying thing to hear about your child let alone see. Thankfully he did recover after months of complications.

Quinn battled for a full month before they did surgery and by then she was so sick that she lost a lot of her blood during surgery and had to undergo multiple transfusions.

They actually set up a transfusion to give her blood as they were doing surgery.

Although we went through something terrible and traumatic, we survived.

Our children beat the odds and survived something that many don’t. In fact, we had babies that did not make it right next to us.

I will never forget holding my son a little tighter when the family next to me came in crying and said their daughter had NEC. She did not survive.

When we came to see our kids the next day, she was gone, a hole left in our nursery. We had become friends with the family and hearing their daughter didn’t make it, was heart wrenching, devastating, name the word and that’s how we felt.

Another friend of ours lost their baby unexpectedly when he was on the road to recovery with NEC. It happened just down the hall from us on the eve of Quinn’s discharge.

I hugged my friend while she sobbed on my shoulder and all I could think was “I am so blessed.” I felt guilty that my kids had survived and hers did not. These are the things that happen in the NICU that no one talks about.

These are the things that stick with you for life and rock you to the core.

Sawyer and Quinn now are two years old. Although we still have our battles we are mostly healthy.

Our experience in the NICU changed me for life. I was diagnosed with PTSD just before the kids were discharged from he NICU but more than that, I am a different person.

I no longer sweat all the small stuff. I have more compassion than I ever did for people and what they may be going through. I remember that life is short and can sometimes be even shorter so soak up every moment.

Finally, when I am about to lose it because my daughter is throwing a tantrum or my son is grumpy, I remind myself that they could not be here at all.

I give myself a second to breathe and remember that they are here, they are strong, they are throwing tantrums because it’s normal.

Our life certainly isn’t normal. Each of our children have been diagnosed with Cerebral Palsy.

We have many therapies a week and check ins with doctors every couple months.

We try to navigate the past, present and future all at once predicting what therapies or adaptations we have needed in the past, will need, and need now.

I have decided that if we can give hope or inspiration to anyone, then it was all worth it. Having a premature baby made me into a better person, even if it wasn’t how we planned our life to go.