Isolation isn’t new to me…

As the whole world is freaking out about being isolated at home, I have returned to a place I once knew well. Isolation, being stuck at home, living in a hospital, not being able to attend functions because your child and her behaviors aren’t welcome or not being able to leave the house because you don’t have someone to take your place was my reality while raising Tiara.

If you are a caretaker or a parent to a medically fragile child this quarantine isn’t really a new thing for you either. You know what I’m talking about. The daily stress of constantly washing your child’s hands, your own hands and having a panic attack when someone else in the house comes home with a minor cold. In our world, a cold leads to a respiratory infection, followed by pneumonia which requires intravenous antibiotics which may not work fast enough resulting in admission to the ICU and a week on a respirator. While dealing with this “cold” we are panicked because our child is scheduled for a kidney transplant, a brain surgery or a shunt replacement and if the infection lingers too long, they won’t be able to have their upcoming procedure. Without this procedure, they could die or have continued increased seizure activity resulting in more developmental delay. This is our reality.

We have spent days, weeks and possibly even months sitting beside the person we are caring for. We may run out for a quick meal or to grab supplies, but our lives are inside watching and caring for the person we love.

Our daily lives are filled with fear, but we continue to find gratitude, grace, and happiness in the smallest of things. We are grateful that our child sits to watch 10 minutes of television without throwing something across the room at their sibling. We are grateful when they take their medication without fighting us. We are grateful when a family member stops by for a visit even though the house is a disaster, our child is screaming and I’m running around like a crazy person trying to meet their needs so this family member will stay longer than 10 minutes and talk to me. We are desperate for outside interaction but won’t admit this to anyone. We have grown accustomed to being alone with our nonverbal child and don’t complain because most people can’t understand and it is our norm.

Yes, I am terrified of the coronavirus not because I’m afraid of getting it myself or of running out of toilet paper because I can deal with both of those realities, I’m afraid for the immediate future. I’m afraid for next month when there are only six respirators in the hospital and ten patients are in respiratory distress and the doctor in charge needs to decide who is worthy of a respirator. Will it be the twenty-year-old patient who didn’t realize they had an underlying condition and now can’t breathe. Will the doctor choose to save your grandfather or your newborn? Who will get the treatment they need and who will be left to die? I’m not saying this to add more stress or fear to your lives but to remind you to follow the protocol and stay home and use social distancing. Your actions will save lives.

Now to talk about the financial aspects of the virus, which will affect pretty much everyone. Yes, I know your 401k is in the dumps and if that is your only financial issue, consider yourself extremely lucky. There are many of us including myself that live paycheck to paycheck. I wish we didn’t but we do. I gave up working to take care of Tiara and my healthy children and then I took ten months off to write Loving Tiara and now we are in a bind because of the coronavirus. Lou has always worked hard to provide for us but he works in a commission-based job so if no cars are sold, no one gets paid. I assume the dealerships will all be closing soon, if they haven’t already.

I graduated from law school and because we chose to have me stay home and care for our children and live in the community I grew up in, we are in a financially dire situation. I wouldn’t trade would I did but right now I’m not happy. I built up a successful staging business but as it slowed I took the hint to follow what the economy was telling me and sold everything. Thank goodness for that move. I then spent ten months writing Loving Tiara, which I planned on becoming a best seller, clearly I live in Lala land, and now I don’t have a business and am I’m not bringing in any money to help with our finances. I haven’t been this sad in a long time.

I am really struggling emotionally through all of this and my kids are confused because I never act like this. I’m always the strong one and for the first time, I’m falling apart and having a hard time being grateful.

I’m actually sobbing as I write this and so wish I could focus on all the good things in my life. I don’t feel like myself, and I’m pretty sure it is the grief I never let out when Tiara passed away.

Keep me in your prayers and I will do the same for you.

Last weekend I had the best time in Arizona with my friends from college. I laughed so hard I wet my pants, my voice was hoarse was talking and it was just what I needed. I stayed in Mara’s guest house which was so amazing, I move in and stay indefinitely. Look my spirits are lifting just remembering how much fun we all had being together. Anyways, Mara hosted a book signing with all her wonderful friends and on Saturday I did my first tv interview with Carey Pena of Inspired Media 360.

She titles the interview, “Facing down fear to find joy.” I think that is what we all need right now.

If you need a book to help to deal with your fear, inspire you to have hope and give you the courage to keep going, read Loving Tiara. Available on Amazon, Barnesandnoble.com and many other online book retailers.

live, love and laugh, like it’s your last…

xoxo tiffani