Sunday, May 2, 2021

SOP ... the end of a school career.


At the end of March, an email notification popped up on my phone and read “Need to schedule SOP meeting” which – being the neurotic person I am immediately read as “Need to schedule SOS meeting” and was like… If this is an emergency why aren’t you calling me?!?

I clicked on the email and discovered SOP was correct. SOP is a “summary of performance” meeting to review, well I honestly do not know what we are reviewing – the past 19 years he’s been in the school district? I don’t know. What it means is that this will be his very last day of school – ever – and we need to wrap up the formalities in one last meeting.

In Illinois, like many states, individuals with disabilities in special education can remain in school through their 21st year of life. Parker’s 21st year ends on Monday. On Tuesday, he turns 22, and everything changes.

I’ve battled, man have I ever battled for these past 19 years. Part of me is done and so ready for there to never ever be another IEP meeting again. I’m tired of fighting. I’m tired of pushing for the district to do what is right for my son to have the appropriate education and accommodations that he requires. It’s exhausting, mentally and emotionally exhausting. Even the good meetings with the best teams when everything is going right, they just drain you.

And, they define you. Without you even realizing it, they define you.

I honestly thought I had done a decent job. Until I saw this “SOP” meeting request. Suddenly every single fear that I’ve had pushed back in the very far part of my mind came rushing forward.

“Have I done enough?”
“Have I asked for the right things for him?”
“Did I push hard enough?”
“Did I give in too much?”
“What if I would have…. “
“What if I wouldn’t have…”

Literally, everything you can imagine I thought, and I started to panic. He isn’t ready. I need the school. All I know is the school. It’s all we’ve done for the past 19 years.

I immediately pulled his previous IEP, well IRLP because we’ve been remote forever he’s had an “Individualized Remote Learning Plan” – so I went back to his last actual in person, pre-covid, IEP and reviewed everything we needed to put into place for his last year for this transition to be successful and none of it has happened. Not one single part of it. Because it couldn’t. It required him to be in person. It required him to be able to be in the community. Things we couldn’t do because they were not allowed.

He missed every single transition opportunity he needed and deserved.

I sent the reminder that he needed his exit evaluation. Because, I enjoy torturing myself or I’m secretly psychotic, I’m not sure which – maybe both – because that was pure hell to read.

Reading the email chain that I am sure I was not supposed to be looped into… I do not feel like anyone went in with the intention of Parker doing well or with any expectations of him. But he did. His parapro went with him and he did what was expected of him. Did he give more? Heck no. There were zero expectations of him so he gave them the bare minimum. Then, I got the report.

If there is a new goal for me, it really needs to be to change the way reports are written and presented to parents, because it is brutal and it hurts.

 I KNOW my son is intellectually delayed. I KNOW this. I don’t think about it 99% of the time because we are too busy living life but I’m aware of it. He’s 22. I tuck him into bed each night, I have to help wipe his bum, I do his cooking, our conversations are limited, and he yells at me way more than he should. He gets frustrated, he has meltdowns, he struggles with concepts. I’m totally aware of the fact that he is not at the same level as his 21 - 22-year-old peers. But, I don’t think about it.

I think about the fact that when he is running low on Gushers or Goldfish or pineapples, he pulls up the HyVee app on my phone and finds the food he wants, adds them to the cart, places the order, and schedules the pickup time. I think about the fact that he can do laundry better than most adults, and definitely more often. I think about his love for the Cubs, the love for the people he worked with, and the job he had. I think about his humor, his laugh, his strengths.

I know his weaknesses, I can’t focus only on them or I’d never get out of bed. Life is too hard for that. So when I get a report that scores him as “very low” or “extremely low” in every category, it is a sucker punch. It takes the wind from your sails.

I read that report multiple times. Every single time it crushed my soul. It sank my depression into a really rough place. How hard would it have been to include something positive in the report? How hard is it to think, “this is going to be really hard for parents to read, I’m going to include something nice.” Instead of just “let me be as brutally honest and as blunt and as harsh with reality as I can be?” Because, people, we know. We live this life. We know.

Instead of reading it and thinking, “We’re going to be ok” I read it and thought, “Holy shit, I have failed this kid in major ways.” Not the school. Not anyone else in his life. Me. I feel like I’ve failed him in every single way possible. This report was just so harsh, I’ve struggled to get past what I’ve read.

I’m getting there, I know that this compares him to other 21 – 22-year-olds. I know the differences there are. But, it’s hard.

And tomorrow will be harder.

Tomorrow I will drive him to school and drop him off there for the very last time. Tomorrow is the last, last day of school for him forever. And while he is there, we will have our SOP meeting and my expectations for it are not high. I think what bothers me the most is that there is nothing for me to say. There is nothing more to be done for this part of his life. Nothing.

And, honestly, without the last year and no preparations for Parker for what is next – he and I are both lost. There is no handbook in this special needs life. No one tells you how to make this work. I’m winging it. Just as I’ve been winging it for the past almost 22 years. I have a plan for Parker and in my head and on paper, it should work, but what if I’m wrong? What if he’s not ready? What if he’ll never be ready?

It’s a lot.

It’s a lot to let soak in. It’s a lot to process. It’s a lot to go through alone. It’s a lot to know others are going through it, too.

If you are, just remember, someone else is in your shoes, too. I am. I’m scared, too. I’m fighting the fear, the feelings of failure, the unknown of what’s ahead just like you.

And just like you, we’ll figure it out. We will. When we really stop and think about it we’ve made mistakes but we’ve never truly let our kids down and we won’t with this next part of our journey either. I’m not going to say it will be easy, nothing has been easy yet, but I will say we can do this.

Monday, September 14, 2020

For the love of pickles...

 I try not to ask for a lot in life.

I try to be a good person. I’ve failed at that more than once. I continue to try daily and refuse to repeat the mistakes already made.

I try to lift others up, to remind them of their worth, their talents, their purpose.

I try to be a good parent. I probably try the hardest at this. I also probably fail the most at this. I hear the most about this, there is no shortage of people quick to point out things they believe that I should have done.

I try not to let the words of others who criticize my parenting stay too long in my head. No one is a perfect parent… no one. We all make mistakes. We all have things we wish we would have done differently. We all have things we’ve learned along the way that we simply didn’t know years ago. This is all of us. I refuse to keep getting caught up in what could have been if I would have … X, Y, Z… because 1. I didn’t and 2. You were not here. You don’t know. Really, you don’t know. I mean, I’m amused that so many people *think* they know what it takes to raise my children without being here 24/7… or ever at all… but, there are times that amusement fades.

Right now, shaking the words and criticisms are harder. We’ve been quarantined much more strictly than most for 6 months now. I’ve been literally a single mom for almost all of these months. Not because their dad didn’t want to be with them but because the doctors said no, we cannot risk the health of our children. So, my house is the “safe house” the “germ-free” house. For many months they could only do outdoor visits with their dad, Jen, and the girls. No going indoors, no overnights. Just outside visits that we would drop everything for them to have. Parker refused to go outside, so those visits were primarily Allison. I cannot imagine how incredibly painful that was for their dad and Jen to be without overnight or inside visits for so long, but they are frontline workers, I can work from home. It was easy for me to close off my house. And we did, completely. And they showed up, almost daily, for outdoor visits. They took walks, bike rides, played with chalk, or simply sat and talked. They were here as much as they could be.

You likely are just now learning this. We made an agreement not to be public about the kids only being here with me. We had enough on our plates that we did not need judgment or to answer to others for what we were doing, although it was very black and white and simple. We were told our child would die. This is what we needed to do to keep our children safe. I don’t know if you’ve ever been told that something could kill your child or children but it pretty much scares the fuck out of you. At least it did me. If the doctor told me that shaving my head and wearing purple spandex every day would keep my kids alive, I would do it. We were, and still are, following the doctor's orders.

There have been no friends inside of our house – we got permission from the doctors for Allison to do a covid prom photoshoot with her friends (which was the best!). There were no sports, no school, no anything. Just me 24/7 until recently. That’s all they got… me. And I have tried hard, God do I ever try hard.

I tried to send cards to family and friends as often as we could. It kept Parker writing his name, it gave Allison a chance to stay more connected. We excelled at this prior to the puppy. I set up a computer to the living room tv so we could Skype with family and friends so we didn’t feel so alone and so that Parker could see that everyone had to stay home. Allison and I played card games each evening after Parker went to bed and when we could get him to join in, we’d play Uno with him – sometimes even on Skype with their dad and Jen.

Anything that comes into our house gets wiped down before the kids can touch it.  After a couple months of having groceries delivered by family and friends we started doing curbside pick up – it got us out of the house. We didn’t do drive-thru or food delivery for the first couple of months – there was just too much we did not know. We do now, partially because I was not made to figure out 3 meals a day, every day, all by myself. I’m not that mom. If it can’t be delivered or picked up curbside, we have family and friends who are always ready to pick something up for us. They’ve been our lifesavers.

I’ve put keeping the children safe as my main priority.
I’ve put keeping the kids connected to others as a priority.
I’ve put our survival as a priority.

I have been so focused on taking care of everyone, on keeping others connected as a priority, and surviving that I’ve completely neglected my mental health. The last thing I wanted was for anyone to know that I was struggling, that my depression and anxiety were the worst they’ve ever been. I smiled, I laughed, I faked it the best I could through every single day… and still do.

I made sacrifices that I am criticized for almost daily.

Parker is incredibly routine-oriented. He lives off of his calendar. He likes it when there are things on it, he likes to be busy. We update his calendar almost daily, it is what kept him grounded and happy. And suddenly it was gone, wiped completely clean. Not only did we take off all of his Special Olympic practices, the state games, and all of Allison’s activities but we wiped off all of his visits with his dad.

Just stop for a minute and think about how much the change impacted you.

Now imagine being a routine-oriented kid who’s calendar is his grounding point and it’s gone. All of it. The routine is completely gone. On top of that, no more fast food. No more running to the store. No more having friends over. Everything is gone. And suddenly.

That threw my boy into a tailspin. The calendar gave him a feeling of control. He knew what to expect every single day. And that was gone. He needed something to feel in control so my cellphone became that substitute.

It meant that text messages would get deleted. Facebook messages would get deleted. Phone calls would not be answered. And I would never know about either.

And, I could not leave his sight. Where he would be is where I would be. I could not work, I could not take classes. I could simply be where he was and our world was calm. If I opened my computer, our world was back in tailspin.

This is what has kept his anxiety down. Keeping anxiety down is key in this house. It prevents meltdowns and we were not in a situation to have a meltdown.

I knew how much his dad wanted to see him in person but it meant getting Parker outside. So, against everything I wanted I did what had to be done to get Parker outside. I offered up turning on an inflatable. And just like that, he was outside. He was able to visit with his dad, Jen, the girls, Rylee and Michale.

Of course, one inflatable in the garage turned into one inflatable on the deck to get him out into the back yard and not just the garage. One inflatable turned into four and for several months now there have been 4 huge Christmas inflatables inflated on my back deck every single day… all day.  And, honestly, I did not give a shit. It was the least of my worries.

In late June we were given the option of choosing 2 houses that we felt were safe that we could trust the people in to follow guidelines and keep their house as safe as possible for the kids so we could do indoor visits. We choose their dad’s house and my parent’s house.  Indoor visits were not overnight visits though.

Those came in late July and with a condition… I still had to keep my house as a safe house. While the kids were now able to stay the night at their dad’s once every 10 days, we still were not allowed in stores, and I still need to restrict my visits to outdoors with the exception of my parent’s house.

Late July also brought Parker’s first quarantine meltdown. And honestly, his first meltdown like this in a few years. Years. Read that again… YEARS. And it was bad. I don’t often talk about Parker’s aggression, we’ve come so far with it that it rarely is an issue but when it is an issue, it is seriously an issue.

And then, in mid-August, as secretly as we had changed the kid’s visitation without being public, we brought my Grandma home to my mom’s house for hospice.

While I agree with both decisions to be private, they took a toll on my mental health. And seriously, God bless Melissa and Sonja because they’ve heard every frustration and virtually wiped every tear that I’ve shed these last 6 months and talked me off the ledge more than once. There were times I became so withdrawn I didn’t even talk with them.

Keeping everything private wasn’t hard for me but it was hard on me.

I’ve been slipping more and more each day, especially since losing my grandma. Losing her crushed my soul and still doesn’t feel real.

While I’ve been slipping, the words from others – especially ones they tell others thinking they won’t be repeated to me (insert eye roll here) compounded with the ones being said directly to me I’m having trouble shaking. They leave me doubting my parenting and leaving me incredibly angry. Because, honestly, no one was in my shoes but me. No one. No one else was in a position to remove the kids from the world and be here as their only person to help them through it. Through something no one has ever lived through before. Something we still are trying to understand. No one has been in these shoes. So being critical of me for Parker having my phone or for me having inflatables up (we have one up in the living room now, too) is really out of place. Yet, it is taking up space in my head. My depression and anxiety are bad, like really bad.

And that brings us to the pickles.

We made our almost daily trip to Dairy Queen for some chicken strips for Parker. the other day. We did the order we do almost every day. 6 piece chicken strip basket without the dipping sauce, no drink, and a side order of pickles. We ordered Allison the same. They repeated the order back and we got our order and went home to eat.

Then it happened.

I opened the boxes of chicken strips and there was gravy, thankfully still in its container and not spilled. This is a crisis in itself because we said no gravy but it wasn’t catastrophic. What was world ending was there were not any pickles.

Yes, I should have checked before we drove off but we’ve been doing this for months and it’s been right every single time. I didn’t see anyone new when we were at the window. I had no reason to think this day would be different. But it was. There was not a single pickle to be found.

At first he laughed it off… “hahaha, the old guy ate all the pickles” (the old guy is always the reason for something not to go right and it works, I don’t know who the old guy is but I appreciate him.) but clearly that was not how he really felt as we would quickly learn.

I grabbed the hamburger pickles from the fridge and a small cup and quickly poured some pickles into the cup (I hate pickles, I don’t touch them – they freak me out). He hated this. He didn’t want these pickles.

I was pissed. And exhausted. And done.

And angry. Super fucking angry. I don’t ask a lot but I DO ask that you get our order right because when you mess up the order of a kid with fragile x or autism, you’ve really ruined our day. Everyone’s day.

This was my tipping point.

This is when I quietly said out loud after he walked away angry at ME for their mistake that I hated my life. That I hated Fragile X. That I could not keep doing this. 

I don't hate my life. I hate where we are in life right now and the worry of not knowing what I will do next. I hate the uncertainty and the unknown of this virus. But my life, I do love. I don't hate Fragile X, I do wish we could live without it or at least more easily with it. And even when I feel like I can't keep doing this, I know I can and I will.

I was done. Seriously, done. I could not do this anymore and that scared me.

I lost my happy tone and asked him what he wanted me to do. He didn’t have an answer but I could see his frustration growing and knew that I was pushing him way too much. He was already thrown out of sync, I couldn’t push this anymore. So I grabbed my keys and wallet and said, “FINE. I will go back to Dairy Queen and get your pickles.”

But he didn’t want that either.

I was fighting back tears now.

I was out of solutions. I was out of energy. I was out of life. And I knew I could not handle another massive meltdown.

He picked up his plate and put it in the microwave. He was done. He simply wasn’t going to eat. He also wasn’t going to let me go back. He would simply be hungry and there was absolutely nothing I could do to make him eat.

And it crushed me.

I’m tired of being completely defeated.

I need your help. I need you to understand a couple of things. I need you to understand that you do not know what others are going through. Some of the “happiest” people I know are fighting depression or anxiety as their biggest demon and not always on the winning side. I need you to understand that our special kids are struggling and their parents are doing everything they can to keep some balance in their lives. I need you to take this pandemic seriously, wear your masks and social distance. I want my life back. And no, it won’t magically happen after the election, it’s a global pandemic. This isn’t just a US issue, it’s a WORLD issue. So please, please do the right thing and wear your masks, stay home when you can, social distance when you are out, and wash and sanitize your hands frequently. I need you to be a part of the solution of getting our lives back. Our kids need it. We need it. Our mental health needs it.

And most of all, I need you to understand our kids, even our adult kids with special needs and do your part to help them through these trying times. They are isolated, too. And when the one thing we have in our routine is getting chicken strips, please, please, please be sure the order is right and don’t forget the pickles. 

Friday, May 29, 2020

One Year

One year.

It feels like it has been a lifetime, truly one of the longest years of my life, but today marks 1 full year since Allison was diagnosed with juvenile dermatomyositis (JDM). This is for her.

Sweet child of mine,

I had fought for so long to find an answer. I watched as you lost so much weight it was scary. I watched as you couldn’t eat because your body was in so much pain. I watched as you walked with your own special gait that people told me they couldn’t see, yet it was so obvious to me. I listened as you told me of the pain you were in. I tried to find an answer.

I disagreed with doctors. I *may* have went slightly overboard with my response when I was told you were fine, simply “malnourished”. I knew this wasn’t the answer.

I also began to fill with uncertainty. So many doctors for over a year had told us you were fine. I knew you were not seeking attention but what if it was growing pains? What if you were fighting an eating disorder? I never wanted to doubt my mom’s intuition, but I started to and I regret that. Thankfully, it was the night before we left for Mayo that the non-stop noise in my head got the best of me and not months before. Still, I apologize, again, I am truly sorry.

I remember every single thing about the room we were in at the Mayo clinic. Not only because we’ve been there so many times since, but I remember that exact day vividly. I remember my excitement of being at the best place, medically, on earth for you and also scared that they would not have an answer and we needed an answer.

I watched as the first doctor looked you over. Grandma and I looked at each other when we saw the doctor’s face change from serious to a twinkle in her eye and grin when she figured it out. As soon as she left the room to get your doctor to formally diagnosis you, we said, “She knows.” And she did.
It was surreal watching them work together to go over all of your joints, every single one, and talk quietly together, pointing out what they saw.

They listened intently as we talked about your medical history and what brought us there.
I remember the excitement in the doctor’s voice when he announced your diagnosis. “Allison, you have Juvenile Dermatomyositis!” It felt like balloons should have fallen from the ceiling there was so much excitement. I remember hearing it was 1 in a million. I remember the wave of relief that rushed over me.

We knew. We had our answer.

Then I could hear his words, not all of them, only some… fatal, life-threatening, no cure. I remember looking at you barely able to breathe, thankful that Grandma had stood up to stand by your side and rub your back. There is no way to explain the fear and pain that goes through a mom’s heart when she hears those words. I was frozen in time, taking in what was happening but not able to process anything until Grandma spoke and asked if it was treatable.


Yes, we could treat it. Yes, you could go into remission. Yes, there is so much hope. Yes, I could breathe again.

We stopped and backed up a few steps to hear again everything we were being told. We jumped at the opportunity to take part in a research project. We called your dad and Jen who were on their way there to let them know the news. We planned to get many tests completed and meet with the doctor again the next day.

We’ve moved forward. I attended a conference, thankfully with Melissa by my side. There was no way I could have made it through without her. The diagnosis was so fresh in our lives. I had so much to learn. I wasn’t prepared for a 2nd disability to rock our world.

We adjusted. We made many trips to Mayo. We have the world’s very best doctor – and team of doctors. I trust them with your life.

I’ve watched each week as you’ve injected yourself with methotrexate, a chemotherapy drug, for almost a year now. I’m in awe of how quickly you took on that responsibility and never hesitated to give yourself that shot. I won’t lie, it is hard to watch.

I’ve went through so many emotions. I’ve sunk into a depression that I’ve struggled to begin to climb my way back out of. You’ve handled it all with such grace and taken on every challenge, I’ve done my very best to support you, talk with others, and learn all that I can. I just can’t, no matter how hard I try, no matter how well you are doing, get past those words… life-threatening. And, I can’t fix it. Damn it, I want to fix this so bad.

Those words shook me to my core. I never imagined anything could take you from me and now we would be fighting your own body to keep you here with us. I’m angry and sad and scared. I’m really, really scared.

I jumped back into fighting for your rights and accommodations, even though you would never use them – I wanted them there just as a safety net at school.

I’ve driven more miles and spent more nights in hotels this past year than I have in the past 10, at least.

You’ve dealt with so much bullshit from people. It’s amazing I am not in jail. You’ve had kids make fun of you for having to sit out at times from the pain as we work to find the right treatments for you, you’ve dealt with the jerkface remarks about your sun sleeves that cover your skin or long sleeved shirts year round. You’ve dealt with assholes who gave you shit for having to wear a mask. It crushes me.

Every ounce of me wants to protect you from the ignorance in this world. We work together to try to educate. It would help if people were not so quick to judge and more responsive to listening. And, well, if we still lived in a time when people cared about each other.
I admire your strength. I admire your determination to continue to do everything, even when you are fighting extreme pain and I want you to stop. I admire your courage to take the steps you need to keep yourself safe despite the response from people. I appreciate your willingness to learn more about this life changing disease.

So much progress was made this past year for you. You have been through surgery and infusions, more blood draws than we could count, CTs, MRIs, Xrays and more. You’ve been amazing through it all.

We were on course with your treatment for you to still take the trip to Europe next month, I was so excited for you.

Then COVID-19.

Our world has stopped. I know how much you hurt to see people your age still getting together with friends, without masks, convinced they won’t be impacted by this. I see your hurt. I see your anger. I understand all of it.

You are isolated. We don’t have an option on that. This disease, especially because of the specific antibody you carry – thanks for being extra rare – attacks your heart and lungs already (in addition to your skin, muscles and joints). We both know, we all know, we can’t take any chances here.
I know that because you are aware of what your outcome would be, it frustrates you more when people you are close to and care about blow this off. You take their ignorance personally. Why can’t they see how simple it would be to wear a mask or social distance to protect people like you… to protect you? I understand why that is a knife through the heart and I wish I could take that pain away. 

I wish I could get them to see this through your eyes.

I know the last several weeks have been hard. Our trip to Mayo was canceled. The Europe trip was canceled. Prom was postponed and it is iffy if it will still go on. You miss your friends, your teachers, your freedom. I miss all of that for you too. I look forward to the day when you can have your life back. You are such an incredibly smart and talented person with the kindest heart of anyone I know.

I am hopeful that as we start another year into this journey that I am able to get past my struggles with the words that hold me down. I know I will continue to watch you thrive. I will continue to fight for you. I will continue to see you do amazing things. I’ll be right beside you – or behind you – supporting and cheering you on the entire way.

You are going to reach remission. And you will stay there. I know it. You deserve it. I love you with all of my heart… I love you 3,000.


PS – you are just malnourished hahahahahaha!

If you would like to support the research to help Allison and so many others like her, please go to and make a donation today.

Tuesday, May 26, 2020

Pandemic life.

For 2 ½ months, we’ve been home. No one is allowed to come into our house. When groceries arrive, mail, or other items are delivered, they are wiped down in the entryway before finding their place in the house. Then the entryway is sanitized again. We’ve taken a few drives, mostly short ones here in town.

Parker, who lives with Fragile X Syndrome - an intellectual disability,  was told everything is closed, including all fast food places, until recently when I’ve reached my peak of cooking 3 meals a day. Now they are open for “select hours, 1 day a week”. He was told that we can’t go into the stores because we do not have a special card to get in.

He knows there is a virus. Carl Azuz from CNN10 tells him about it, daily, he obsesses over watching Carl Azuz and hearing what he has to say. Then pouting because his school didn’t get the shout out at the end of the broadcast. It’s our routine, though, and I appreciate Carl’s 10-minute recap of events plus adventures he takes us on as much as Parker does.

There are no sports on TV. Every day Parker tells me who was supposed to be playing today before the “stupid virus”.

No friends can come over, family must be masked and 6 feet apart for an outside visit only.
Our calendar is empty. No school. No visits. No games. No appointments. No anything. Just blank. Emptiness.

We’ve seen every episode of Bubble Guppies, Blue’s Clues, and Paw Patrol ever made. I keep thinking we’ve seen every episode of Sponge Bob yet I keep seeing new to me ones, so apparently, we still have some watching to do there.

Parker is up by 6 and in bed by 8 to watch TV and asleep by 9 – 9:30.

Before the puppy, I was woken each morning from yells of help from the bathroom. I still start our morning helping him in the bathroom. Even at 21, he still requires assistance with cleaning. I still debate every day getting a bidet and wondering if it would increase his independence.  

He doesn’t like for me to leave his side. “Mom, mom, mom, mom, mom, mom….” Repeats throughout the day, if I leave the room the voice follows to be sure I’m still here.

He’s taken backward steps on his independence and, while I know we will get them back, I worry if I will ever get him back in the community the way he was before.

He knows the virus will make him (and others) sick. He knows people are dying. He knows we can’t give hugs to our friends or family… and he loves hugs.

He holds my cell phone all day long, even though he has his own. He deletes text messages he deems unnecessary and holds the phone inches from my face to read for the ones he feels are important. He doesn’t want to miss a thing, and the most important things come through on my phone. It helps him feel as though he has some control and keeps me off of social media, so it is truly beneficial for us both… just maybe not for the people who never hear back from me.

I can’t imagine how he would survive COVID-19 if he were to get it. His communication is limited. His understanding is limited. It doesn’t scare me. It frightens the hell out of me. Maybe he would be asymptomatic and not at all phased. I don’t know. I’m not willing to risk his life to find out.

Allison wakes up Allison is woke up around 11 – 12. If I let her keep sleeping, she would happily stay in bed until 1 or 2. It sounds terrible, or to me like a typical 17-year-old, but the truth is she is awake almost all night long, so to get up late morning gives her the number of hours she should have. She’s always been my night owl. Our time together is after her brother goes to bed.

We spend way too much time sharing tik toc videos but also a lot of time playing card games and now working together to train the puppy.

She is amazingly quiet throughout the day, I make her repeat herself more times than I can count because I simply cannot hear her. Until her brother goes to bed. Suddenly her concert-going voice comes out and she yells everything at me as though I’m 2 blocks, not 2 feet away.

She understands everything. She knows what’s going on, she follows the news, she expresses her frustration at the ignorance and self-entitlement around us.

She knows she would likely die if she were to get this.

Can you even imagine being 17 and knowing that there is a virus in our world that would kill you?
She is not only immune suppressed from the methotrexate (a chemotherapy drug she takes for her juvenile dermatomyositis - JDM) but she had an infusion to remove all of the B cells from her body to help her better fight the JDM.  She has basically no immunity. On top of that, because of a specific antibody she has, her heart and lungs are already compromised and at risk to be attacked from her own body, let alone something like COVID-19.

She watches as her friends and people from her school still get together. She sees the snapchats of people cursing our governor for not allowing people to gather and the photos of them breaking every distancing recommendation there is. She sees people refusing to wear masks and has been made fun of for wearing hers (which has been required since the onset of flu season because of her JDM).
She feels as though her friends do not care at all about her when they ignore the guidelines and get together. She takes it very personally. How could they not care knowing they have a friend who would die? I’m, honestly, out of things to tell her to attempt to make her feel better. I’m trying to restrain from saying that people are careless, selfish assholes even though those are the words playing through my head.

She can’t touch anything that comes into our home until it has been sanitized. She is isolated and feels incredibly alone.

We do our best to provide opportunities for her to ride her horse. It’s safe and the best thing for her mental health. Time outside, even if mostly or completely alone on her horse, doing something she loves.

There are video chats, texts, and phone calls that happen daily, but nothing replaces hanging out in person with your friends.

This is our life right now. We are home. We are isolated. We are taking extreme precautions to stay healthy and safe.

Despite the isolation and exhaustion of trying to be an entire village for my kids, I would not change what we are doing for anything. This is what will keep them safe, healthy, and alive. And at the end of the day, that is all that matters to me and those who love them.

It leaves me with way too much time to think. And way too much time to be angry and frustrated with the world around me.

I’ve lost way too many people in my life because of my stance on masks. I don’t see why people are losing their minds over wearing them. You cannot smoke in restaurants, stores, or gas stations because it is for the best health of those around you that you do not. It is a public health and safety issue. That is exactly what this is. It is a public health and safety issue.

So why isn’t it being enforced?

I remember when people could smoke in restaurants and I remember when that changed but I am not old enough to know if people lost their ever-loving minds over it. It was enforced and we are all healthier because of it.

So, why is this different? COVID-19 is more deadly than secondhand smoke. It is more deadly than basically everything yet people will disagree with that statement.

I won’t even go into how divided our country is due to politics right now. At  a time when we NEED to be unified on doing the right thing, not only are there 100 different ideas on what is best but hateful arguing as to what is right, wrong, and your rights. That is horrifying and could have been avoided.
There are people who still think this is a hoax by our government. I am not sure if they are blind to the rest of the world or how that works in their mind but it is insane.

So, it isn’t that I am not aware that there are people out there that are selfish, ignorant, and bound and determined to break every rule (especially since they are not enforced – and those who should be enforcing them are saying they won’t – ugh!) because it is against their “rights”.

Apparently, your right to be an asshole is of higher value than anyone else’s right to ever be able to leave their homes.

All you need to do is wear a mask. I’m not asking you to cut off a finger each time you enter a store. I’m asking that you wear a mask, properly, to cover your mouth and nose. Why is that such an impossible request?

Instead, you scream at me that I live in fear. That I am a sheep. That I trust too easily. (eye roll) You scream at me about your rights. Your fears (you may die from breathing in your own oxygen – eye roll, again). But it is MY fears that are proven by the medical community that my children would likely die that are ridiculous. What is wrong with you?

You tell me “don’t leave your home.”

I haven’t been. But, the reality is I SHOULD be able to. I SHOULD be able to take my adult children, wearing masks, into the store and they SHOULD be safe because YOU are wearing yours, too. But I can’t. Because YOU won’t.

Because your “rights” and your “freedoms” are more important than ours. What in the actual selfish fuck madness is that???

Not only will you not wear a mask but this past holiday weekend, people jumped at the opportunity to cross state lines and party with massive groups of people, without social distancing, without masks, without a care in the world because YOU deserve to live your life.

I’ve watched the photos pop up on my newsfeed. The pools, the beaches, the restaurants… all of the places you’ve been because YOU deserved it. Now you are back in our communities, back at work, back in the stores where our groceries come from – without your masks – possibly contaminating and exposing others.

Now we definitely cannot leave home for a while. Your “freedoms” have confined us even longer.  It wasn’t your freedoms. It was your selfishness. Freedom isn’t about only some people being allowed to be free.

Maybe our communities and our nation have always been incredibly selfish and I just didn’t notice but I do now, more than ever.

I’ve had people “laugh” at me on Facebook for saying masks should be worn, for saying we should follow the guidelines set out because I want EVERYONE to be able to leave their homes at some point soon. Not just those who don’t give a shit. I’ve had business owners laugh at and mock me.
I can’t help but wonder, if your children could die, would you feel the same way? If your child’s doctor specifically said to you that the odds of survival are extremely low… would you still demand your right not to wear a mask?

This entire 2 ½ months, I’ve watched people continue to go to stores, those who cannot work from home – go to work, many gather with family and friends… all from the inside of my home. It is the most bizarre feeling to see the world go on while you cannot leave your home. For the most part, those in my life do so safely, wearing masks, using hand sanitizer, and taking precautions.
We do have to get back to life. We just need to do so safely.

I’ve exhausted myself trying to explain why this is so incredibly important for you to follow the guidelines with masks and distancing. No part of me understands why it is such a challenge for you or why you cannot.

I see who you are now, though. I see they type of person you are. I understand you do not care at all about the lives of others. I am fine that you are no longer in my life. I’m better without you.

I don’t know how to unify our country on this. I don’t know when doing what is right for the benefit of others became the last thing people wanted to do instead of the first. I don’t know when “love thy neighbor” became “I don’t give a shit about you.” But that is where we are and my heart could not be more sad.

To my friends who are home alone raising special needs or immune-compromised children or caring for family members, I see you. I know you are feeling defeated, alone, and exhausted. I know you feel like you are failing everyone around you because there has been regression. I know you feel like you cannot keep doing this. I know. Believe me, I know.

I also know you can. You are stronger and smarter than the fear and ignorance that is surrounding us. You are better to continue to do the right thing, put others first, and help those around you than those who do not. You will get back the steps you’ve taken backwards. You will make progress with your loved ones, again. You are so incredibly amazing and I know you rarely hear that, if at all, but it is true. It is hard to do things on your own, it is harder when you lose your village and are isolated BUT you ARE doing it and you will keep doing it and rocking it.

This will change you, it already has, it was impossible for it not to. You will come out stronger, even though you can barely stand now. You have what it takes to get through this no matter how much longer it lasts. You have the patience still in you that you fear is gone, you just have to dig deeper for it.

You don’t have to be perfect. You don’t have to accomplish it all. You simply have to be sure that you and those you love survive.

If there are dishes in your sink, stacks of stuff on your counters, floors that need swept, laundry that needs done – that will happen. Rest when you can. Know you are doing the work of an entire village and the only one who is expecting more for you is … you. Take those moments to close your eyes and rest, even if briefly. Breathe deep. Let go of what you can. Stay off social media if you need to, for the good that it brings, right now the worse of what it does is drowning us all.

Continue to be a voice.

Don’t give up.

You are not alone.

I see you.

I am you.

We’ve got this.

Life has given us an incredibly challenging hand and we’ve always risen to the occasion. We will again. There will be a time when we can leave our homes again, when we can let the village back in to help raise our kids.

Our kids are thriving because they are alive. When this is over, they will blow us all away with the progress they will make. I know they will.

Hang in there, dear friend. I’m sorry people are selfish. I am sorry people do not care. I pray that changes every single day. Even more, I pray that you make it through. I worry about you but I know with all of my heart that you will.

Just keep swimming.

To those in my life who have become my COVID-19 village, who deliver us groceries or check-in to see if we need anything, I hope and pray you always know how thankful I am for each of you. Your kindness and thoughtfulness mean more to me than just picking something up or check-in in on me. You are my reminder that there are good people in our world, that there is hope for humanity, that the good always shines through. You are truly the good in this world and I pray you never let anyone change that about you. I am forever thankful.

Friday, April 17, 2020

Special needs quarantine.

Words have always come easy for me. I sit down, close my eyes, and just type. All the words from my always wanting to write mind just flow. Throughout the day, my mind is always “writing” – always, it is impossible for me to turn off. So, when I sit at the end of the day to let it out and I can’t, it worries me, and I know takes a toll on my mental health.

That is where I am at though. It is where I have been for the past 6 or 8 weeks. There is so much I have started to write and started to say but stopped. I’ve written and re-written the same thing over and over and over and it just isn’t right, so I stop without finishing. Because of this, my mind just endlessly spins.

I think today though, the frustration in Parker and the inability to give him what he needs was just enough to push my emotions enough to let go and write. I’ve been holding them in as much as I can, which isn’t saying much – as I cry at the drop of a hat – but I am doing my best. It is so hard to be so strong every day in the best of times and nearly impossible right now. I’m not sure which one of us I need to write more about at this moment or if it is just a twisted combination of us. Again, unlike me, my writing is always so clear for me.

Parker has always lived in a world that is upside down. He’s struggled to fit into “our world”, his is one of routine, familiar people and things, and consistency. “Our world” is too loud, too chaotic, too much of just everything. We’ve been able to give him both what he needs to merge his world with ours through consistency and routine and also the tools to help it be a bit more bearable, like his headphones. We had a “normal” in our very abnormal world, but it was ours and we rocked it.

And then COVID-19. I watched it make it’s way across countries. I saw what my friends across the world were going through. I slowly stocked up on Parker’s favorite things and added to what was in the freezer. It was incredibly clear it was coming and all I could do was brace for it.

I love having my kids home with me, that is no secret. I’ve always been most content when they are here under my roof. I don’t turn down time with them, I’m happy to keep them when their dad has something come up, I’m better when they are here. I’m also a homebody, so, this whole not leaving my house and not having to be social is kinda right up my ally. Except it also isn’t.

Parker’s life is so upside down right now and I can’t fix it. Do you even know how hard that is for me? I can’t fix it. I know what he needs, I know what would make it better and I can’t make it happen. Instead, each passing day my inability to meet that one need makes his life so much worse and it is crushing me.

He needs an end date. A date to mark on the calendar when his life will go back to his normal. I know, we all do, but I’ve always been able to give him this. Concrete days to circle on the calendar to ease his mind about when and what will be happening. Instead, our calendar just keeps getting more empty and I can’t tell him when that will change or how it will change.

His routine is gone and he wants it back. It’s crippling to him to have it this interrupted. Our days are pretty much run by him at this point because the battle I’m picking is survival. That’s it. My only objective is for us to survive. Any regression that happens, I can fix later. Any habits that sneak back in, I’ll take care of at t later date. Right now, we just need to survive and for that to happen, I have to give in.

I can’t give him the routine he needs. I can’t give him the people he wants to see (in person, we do a ton of video chatting though). I can’t give him literally 90% of what he wants right now. So I give him me and lately, even that isn’t enough.

Our days are exhausting and we aren’t even doing anything. We wake up before 7 and go through our routine: feed the cats, take our meds, make our to-do lists for the day, tv, school work, wake up Allison, eat lunch, watch TV, call family and friends, play card games, eat supper and go to bed. That doesn’t seem exhausting except throughout the day, I’m not allowed to leave his sight. At all.

We are glued together. If I get up to leave the room – he panics. Where am I going? What am I doing? Why am I doing it? A flood of questions that are not asked of me but yelled at me, even though I’m only a foot or two away. When I leave the room, he follows. I go to the bathroom, he stands outside the door, talking the entire time, mostly telling me to hurry up.

He has my phone. He gets incredibly upset if I even attempt to open my computer to work. I can’t talk on the phone, send a text, or respond to an email without doing so over his yelling and frustration.

He yells … a lot, all day. Everything is “stupid” the stupid virus, the stupid food, the stupid weather, the stupid car rides that he doesn’t want to take. His stupid mom. I hear pretty much all of it through the course of the day, I’m stupid, an idiot, a jerk, and on his really rough moments, I’m a bitch.

And I can’t fix it.

He’s frustrated. He’s frustrated that we can’t go to the store, we can’t go see our family or friends, we can’t go to school, we can’t go to Special Olympics, we can’t basically anything at the moment. And I have no way to say when we can again.

He can't watch his Cubbies. He *could* watch old games but that isn't what he wants. He wants new games where he can follow along on his ESPN app. He wants his Cubbies back. I can't even tell him when that may be. He tells me each day who they were supposed to be playing that day.

He’s isolated. His friends rarely answer calls or texts. When we do video chat, he doesn’t want to talk – he simply wants to SEE the people in his life and hear them. He does so with his headphones on while watching Power Rangers but it helps, it helps him so very much.

And lately, getting increasingly more upsetting each day – he has a meltdown over his upcoming birthday.

We’ve been talking about his 21st birthday for months. MONTHS. He’s been so excited. We were going to go big, hoping to get all of his friends from high school together, along with friends from the years since his class graduated that are an important part of his life. He has been so excited. And now we can’t and he’s pissed… at me.

I’m the one that isn’t scheduling the party. I’m not calling the Y or the bowling alley or making the plans. I’m not sending invitations or making a guest list. I’m not… because I can’t. And, while he’s grasped a lot with this current situation and dealt with it the best he can – he is not at all grasping why his birthday party cannot happen.

“My birthday isn’t canceled” he will tell me, “I still have my birthday. I be 21” he will repeat over and over. And yes, that is true. It will, however, just be the 3 of us and that is not at all how he wants to spend his 21st birthday.

I’ve talked about how we can do a big video call with everyone – he hates the idea.
I’ve talked about how we can have friends drive by and honk – he hates the idea.
I’ve talked about how we can have a party in June or July or August – whenever we are able to have a party again. That one he really can’t wrap his mind around… “it won’t be my birthday then.”

Don’t get me wrong, I’m still going to plan those things. He may hate them and he may hate me for them – or he will love them. I really don’t know at this point but I have to at least try.

I’m just so heartbroken and sad for him that I can’t fix any of this.
I’m sorry I can’t tell him when this will be over.
I’m sorry I can’t let him be with people he loves and craves to see right now.
I’m sorry I can’t give him the party he has been waiting for.
I’m sorry we can’t just leave and grab something from the store.
I’m sorry we can’t go to the movies.
I’m sorry everything is closed.
I’m so very sorry I can’t fix it.
I’m sorry it is still getting worse.
I’m sorry I can’t make it easier to understand.

We’ve been home so long, I can’t even tell you when we last really left the house. We’ve taken a couple of drives but we really aren’t leaving. Allison’s immune system is non-existent. Between the infusion to remove her B-Cells and the chemotherapy drugs she takes, it simply isn’t there. This virus would be deadly to her and we all know it. Parker’s communication is limited, he can’t tell us when he is sick, he can’t tell us how he feels, we wouldn’t know until he was incredibly sick that he wasn’t feeling well. That’s a lot of risk that we are not willing to take. So we stay home.

Scott, Jen, and our friends will pick up groceries and medications we need and leave them on our porch. I go through and sanitize each item before it goes to the kitchen. On days that I feel fine and normal, that goes immediately out the window as I’m wiping down a box of Cheerios with a bleach wipe before letting my children touch it.

Fear and panic control more of my mind than they should, and I hear from people all of the time how I shouldn’t let that happen. Awesome. That makes me feel better right away. A legitimate feeling and emotion I need to process I’m told is wrong and that I’m wrong for having them. You know, because they have a child or children who is extremely high risk… oh yeah, they don’t.

There is a difference in acknowledging and feeling an emotion to work your way through it and letting it control you. It can be a damn fine line but you have to let people feel. You have to acknowledge real emotions and let them experience them. It is the only way to the other side.

I stay up with Allison in the evenings, she is my night owl. We often go to bed between 1 – 2 am but this is our time, our time to catch up, our time to talk, our time to play games, watch a movie or just “be” in the moment together. I cherish these moments.

When I do sleep, it is in short spurts. Parker is up 3 or 4 times a night. My mind races. I know I need sleep but needing it and getting it are not the same.

My tank is on empty.

I’m a little bit jealous of people who leave their homes for work, or the store, or to take a walk because that normalcy in this time of uncertainty has to be nice. You see other people, in person. Not everyone is getting that right now. And I feel guilty for having that bit of jealousy.

I feel guilty that I get all of this time with my kids and other people who would love to have a day or even an hour with them can’t have it at the moment. It hurts me to know how much they are missing out on and… what if something happens to them and we did all of this and they missed so much and my kids don’t have any more time to be with them? That one really cuts deep.

I know this isn’t forever, I know we will do everything we are supposed to and we will get – at some point – our lives back. I know that will happen. It doesn’t always make each day easier.

We’ve had to make some incredibly hard decisions during all of this. I know they were the right ones but it doesn’t take away any of the guilt or make it any easier. The right decisions are often the hardest.

Don’t get me wrong – not every moment of our day is rough. We have so many laughs and so many moments that I want to hold onto forever. Moments of togetherness that can’t be replaced. We’ve been silly and creative and man, have we laughed! Those moments happen every single day. They are the moments I hold onto when the day ends and the ones I wait for through the challenging parts of our day. We send cards out every day and it is a highlight of our day to pick out who they are going to, who gets what card and then signing, addressing and stamping them. We know this brings a smile to others and it is so important to us.

If I could make a request or two… ok, 2 maybe 3… or 4 or 5...

1. Check on your friends who are parents of special needs kids. They are isolated. They likely aren’t having happy hour zoom dates with groups of friends. They likely aren’t leaving the house. They likely aren’t sleeping or eating or exercising like they should. They are likely worried about the health of their children. They are likely worried about therapies not happening and how to get their child to do even 15 minutes of schoolwork at home without it ruining everyone’s day. They are likely in need of you, especially the single moms and dads. Just let them know you are there.

2. Please don’t tell others how to feel or that they are wrong for feeling the way they do. We all need our feelings validated.

3. Sometimes people just need to vent. They just need to get things off their chest. Let them. Without telling them what and how they should be doing something, just let them vent. Odds are, whatever you are about to suggest they are either already doing but didn’t mention or they can’t do and don’t want to explain the why behind it. Supportive, positive words go a long way.

4. Take the time, every day, to tell people you love them. If this has taught us anything, it is that nothing in life is promised. We don’t know what tomorrow will bring, or if it will come at all. Say I love you now, to your family, to your friends, to your kids, to your pets, to anyone who needs to hear it.

5. Be kinder, more compassionate, more understanding and have empathy. This is missing from our world. We can change that.

Check-in on each other. We all need that right now. To my special needs families out there… I see you, I feel you, I hear you, I hurt for you, I am you. I understand. You are so incredibly strong and have proven this time and time again, I know you will now, too. Today may be rough but tomorrow is a new day.

So, this concludes the most all over the place blog I’ve ever written, it was a bit of a shitshow but I do feel a bit better now, at least well enough to sleep for a few hours. 😊

Tuesday, March 24, 2020

Monsters We Can Not See

It isn’t the monsters we can see that we fear the most, it is the ones we can’t see.

Cancer. Disease. And now, COVID-19.

We do our best to prepare to fight them and to work hard to avoid them but we can’t see them, we can’t feel them until it is too late and they have already attacked, and they tend to be the most deadly.
I’m not going to lie to you, this current monster has me petrified. We don’t know much about it. We don’t have the tests needed for it. People aren’t doing what they can to flatten the curve. People feel invincible.

We do know it spreads quickly. We also know that it is deadly. We know that not a single one of us have ever lived through or faced something of this magnitude of unknown.

Yet, the “advice” I keep hearing from people is: “Don’t let fear control you.” “Choose to live.” “Promise your kids they will be ok.” and, of course, “I promise you will be ok.”

Can we stop with that shit?

Here is the reality, none of us have ever experienced this. 

You don’t want me to be afraid, yet you want me to wash my hands every 10 minutes, not touch my face, sanitize every single thing that comes into my home, every surface, immediately wash my clothes after being around other people, and you want every 5th commercial on TV to remind me who is at the highest risk.

Do you know who is at the highest risk? My 17-year-old daughter. My father. My grandmother. And, due to his inability to effectively communicate, my son with a disability. My ex-husband. Myself. So basically, 4 generations of my family, my children and both of their parents.

But, don’t be afraid. Live without fear.

“Choose to live” but stay away from people, keep a 6-foot distance, ideally never leave your home. Take a walk but avoid anyone who may be on the sidewalk. Go to the store but don’t let anyone stand close to you.

My biggest issue is with the word “Promise”.

You can’t promise me anything and if you’ve read any of my previous blogs you know I will NOT use the word promise with my kids unless I know I can follow through.

Here is the reality, you can’t promise me that any of us will be ok. You can’t promise me that even with all of our protection and efforts that we won’t get this. You can’t promise me that if we get it, we will have a mild case and be ok. You can’t promise me that we, or someone we know, won’t die. So do not ask me to make that promise to my children, because I won’t.

I can promise them that I will follow every guideline, as will their dad and his family. I can promise them that we will do all we can but we cannot promise that any of us are completely safe from this. I won’t. It is irresponsible.

Do you want to know why this bothers me so much? Because a promise is a false sense of hope. If someone you look up to, a parent, or a person of authority makes you this grand promise that you will be ok, you believe them. You let your guard down. You think others are overreacting. You think you have nothing to worry about when in reality you should worry and you should keep your guard up.

They can try but not guarantee they can protect you or your family.

It bothers me that in a time of fear, no one is validating that fear. No one is saying that it is ok to have that feeling. Instead of teaching ways to cope with that fear in healthy ways, we are just told: “Don’t be afraid.” That’s not helpful. This is a valid feeling.

Anxiety is high. Panic attacks are more prevalent. Depression is at an all-time high. People are watching what is happening in other countries and in ours. They know people are dying by the hundreds. They know that we do not have the medical capability to get through this at the current pace. They know our medical personnel and first responders do not have the protective gear they need. They know that the numbers in the US are a fraction of what reality is because, at least where we are, nearly impossible to get a test. Instead, we are told to assume we have it, but that doesn’t count in the overall numbers.

I’m scared. I’m not going to hide that from my children or lie to them. I won’t make them false promises. I won’t fill them with fear but I will approach them with honesty. I will help them understand the ways they can protect themselves. I will teach them the importance of communication and telling people in your life that you love them. I will teach them that while we cannot go out and make deliveries or pick up prescriptions for others, we can donate to the coffee fund for medical personnel at our local clinic. We can send cards and messages to people who are alone. We can do things from inside our home that keeps us safe and make a difference. And that by not leaving the house, we ARE making a difference. We are doing our part to flatten the curve. We are preventing the numbers from growing.

We don’t know that we haven’t been exposed and that we won’t be hit with this tomorrow from exposure before we tightened up our quarantine efforts. We do know we can appreciate every single day. We can take time each day to talk about memories that are important and plans for what we want to do after this has passed and we are in a better place again.

I DO believe that there is an end to this. I do believe that the majority of people will not need medical attention and be able to self-treat at home. I do believe we will come together on the other side of this. I do believe this will forever change us. I pray it is for the better.

I also see the reality and I won’t ignore that or tell anyone who is feeling more anxious or scared that they are wrong for feeling the way they do. And I won’t promise them they will be ok. I hope they will. I really hope they will but I cannot make a false promise. So, if you could lay off that shit, those of us who live with and love people who are at risk for life-threatening complications from this would appreciate it. Because this monster that we cannot see is the scariest one yet.

Monday, March 23, 2020

What if it was the last time?

The kids and I have been home for longer than most. My daughter has a compromised immune system and my son has a disability that limits his ability to tell me how he feels. I’ve kept them as much in a bubble as I can. That isn’t exactly new to them – it started shortly after my daughter’s diagnosis at the end of last May and jumped into high gear at the start of flu season, knowing what the flu could do to her. I work from home doing freelance marketing and social media work for small businesses, ghostwriting, and have a side gig baking the best cupcakes you could imagine,– my work has come pretty much to a halt which has left me a lot of time to think.

A lot has me scared right now. I’ve been paying attention to this virus since it started spreading through China. I tried to convince myself that the US would take the steps to prepare and have more than enough testing kits and medical supplies available as I watched it ravish through Italy. I thought of the little things – picking up an extra box of goldfish crackers or extra 6 pack of my son’s favorite lemonade when I was at the store, sometimes I’d grab an extra pound of hamburger or bread for the freezer which came in handy when the stores started to become aisles of chaos and hoarding. I don’t have a lot, I certainly didn’t hoard, but I have enough to get us through a couple of weeks which is something I’ve always tried to do.  Although, I overlooked picking up an extra can or two of Lysol or hand sanitizer because I thought we were good there, it turns out I was good on Febreze, not Lysol, but we have enough Bath & Body mini sanitizers to last us awhile so I’m not going to panic about that one yet – but it is a crucial part of our day to day as it is with many with autoimmune diseases.

What I didn’t think about was saying goodbye. I didn’t think that this may be the last time I see people I love and care for. While I saw what was happening elsewhere, I couldn’t grasp that part – or maybe I just didn’t want to think about or consider it.

And then last Sunday afternoon happened. I called my dad after not being able to reach my mom. On the other end, I heard him gasping for air and trying to talk. He was barely saying anything, and he didn’t need to. He said they were calling the ambulance and that was all I needed to know. I told him to hang up and have mom call me later. And I told him I loved him.

If you’ve never heard someone gasping for air in an attempt to breathe, I pray you never do. It’s a sound you don’t forget, especially when it is someone you love. I’ve heard it before that call with my dad and it is one of my bigger fears with my daughter’s autoimmune disease, the only thing I fear more than her lungs being attacked is death.

That moment on the phone with my dad, my entire world started to crash around me. I couldn’t remember the last time I saw them – although I’m sure it wasn’t too long ago, or the last time I saw my sisters, my grandma, my cousins, aunts, and uncles. I couldn’t think of when I last saw my friends. All I could think was that I wouldn’t have known it was the last time we would see each other, and the feeling crushed me.

I thought of all the times I could have done or said more, of all of the things I wish I had never said. I wondered if they knew how much I loved them, how much I love our memories and how much I want more than anything for us to make more. I wondered if I hugged them enough to get us through until I could hug them again. And I wondered what if there isn’t an again.

My dad was diagnosed with double pneumonia and the onset of congestive heart failure. Hospital visitors are now very restricted, understandably, but I cannot begin to put into words how much it hurt me, and my sisters, to not be there by his side. He tested negative for COVID-19, it took several days to get the results back, but we were thankful he was able to be tested as many others are not. Test kits are incredibly scarce.  He is home now, recovering, with my mom – a nurse – and their black lab, Jessie, by his side. I still can’t go see him and it hurts. I want to hug him and tell him how much I love him. I really just want to hug him. My dad gives the world's best hugs. Right now, I need one of those.

My daughter is high-risk for COVID-19 to be detrimental or deadly to her. My dad is also. So is my grandma and while none of us have admitted it, my mom likely is too. If I leave my house, I risk picking it up and taking it to any of them. My parents live an hour and a half away, it would include a gas station stop. There are simply too many factors to risk any of their lives even though it hurts.
It hurts not knowing who I will see again. It hurts knowing that if I lose someone I love, we won’t be able to gather to mourn them or celebrate their incredible life. It hurts to know that I can’t remember our last goodbye and I certainly didn’t think it would be our last. I hold out hope, still, that it wasn’t.
I watch through the view of social media the hate that has filled our country and our lives. I look at how this crisis, which will take the lives of many, hasn’t brought us closer together but torn us further apart. I hate that people aren’t taking any of this seriously, either feeling invincible or not caring who they could infect. I can’t help but wonder if it is still possible to save this country that I love.

I remember after 9/11 how the world came together, how our nation came together and stood strong. I miss those days. I miss the unity. I miss how we cared for each other.

This virus won’t be that much different, it is its own form of terrorism. Innocent people will lose their lives. Families will suffer. All of us will forever be changed. None of us, not even those of us watching what was unfolding in other countries truly grasped the magnitude of this, some still don’t. So, why can’t we let it unify us?

Is it because we can’t see it? Is it the political divide? The lies? The constant vetting of information to really know what is happening?  The blindness to what is clearly not true and what is true?

We have sunk so far from the lies and the hate that it’s like we’ve been trekking through the mud and we are now so deep that making the next step feels impossible, or like our foot will come out of our boot that is trapped by the suction of the mud and we will fall.

How do we fix that? How do we free our feet from being trapped and pull together again, as a nation, as a world sharing one planet?

Maybe more people need to stop and think – when was the last time you saw your parents? Grandparents? Best friend? Significant other? Cousins? Aunts? Uncles? Friends? Did any part of you think it would be the last time? And what if it was?

I see people who have lost someone unexpectedly often post to social media asking, “if we knew we would be saying goodbye, would this have been easier?” I don’t have that answer for them or for us, but I can tell you it is on my mind a lot more these days.

If we knew this virus could be goodbye for someone in our lives, or for us, are we doing all we can, so they know we love them before they are gone?

Our world has been turned upside down in a way that none of us have ever experienced. We have the opportunity to use this time to rethink our priorities and come together. We have the opportunity to use this time to be kinder, to reach out (virtually or by mail) and tell our family and friends we love them. We have the opportunity to help the most vulnerable be safer in this time of the unknown by picking up groceries or medications for them or even simply checking in on them or sending a card to say Hello.

I know it won’t solve all our problems, but I have to believe that in a world filled with hate that love will win… again, even if we have to fight for it.

For my friends and my family, I love you so much. I love you more than I can find words to express but I promise to keep trying. I am thankful for every single memory you’ve given me, the times you lifted me up when I had fallen, and the times you let me lift you. I pray each night that every single one of you makes it through this horrible time we are living in and we have the opportunity to see and hug each other again. I’m thankful for the life lessons you’ve taught me and the ones we’ve learned together. I wish you and your loved one’s good health and the ability to unite again. 

While I understand wanting to get everyone together for a party when this is over, I really just want to hug each one of you and remind you that you are loved now and always have been. I want some one on one time to catch up, to reminisce, to just pause in the moment of being together.

If you take nothing else from this, please take away that this virus could take the life of any of us at any given time. Use the time you have now to tell people you love them, are thankful for them, or just that you are glad they are in your life. Don’t wait. We really don’t know what tomorrow will bring. And, if tomorrow or next week or next month brings an end to this all and we are all here to talk about it and tell our grandchildren about it – what did it hurt to tell someone something important?

Please, be kinder. Be more patient. Be more understanding. And please, don’t take any day for granted.

And, just in case it needs to be said (again) say it by text, phone, email, mail, any way you can that keeps you in your home and away from each other for now. Please follow the guidelines for social distancing and the shelter in place.