It happens to everyone. It’s a natural part of life. Find me a person who has never been disappointed. I dare you.

Since having Ella and going through all that we have I honestly try exceptionally hard to find the good in each day. Even if it’s the simplest of things. This past weekend she fell asleep on my lap and I melted. I don’t ever take those special moments we have together for granted because it’s so rare that she doesn’t have one of her “friends” by her side.

Having a special needs kiddo makes you feel new things. It changes your mindset and perspective. You learn and see things you never thought you would, and your expectations for those involved in your child’s care are naturally extremely high. You see how money drives most non-essential care decisions and how everyones best interests are rarely the same. You find yourself at the mercy of people you don’t really like, yet dig deep to pretend you do knowing it’s for the greater good.

I wish I could remember how many battles we have fought. Since Ella has been born we have gotten push back multiple times from our school district, the county, the bus company, pharmacies, doctors, and that’s just scratching the surface. We have fought and filed appeals with our insurance company countless times and have been questioned on why a medivac flight was needed despite being intubated. I have called state senators and lawmakers in Albany. We even had an incident when we went to Disney regarding policies for handicap guests. Most recently, and what feels like a weekly occurrence, I have been battling the nursing agency about coverage for Ella. I used to think I was a pretty logical thinker but am starting to see I view the world differently than most.

These battles wear at me. Some days I am unstoppable and will take down anyone who gets in my way. Other days I feel completely defeated. I am not trying to make friends so pissing people off is never off the table. I speak what’s on my mind and say what I mean, even when I am grateful for a job well done. Doing the right thing doesn’t always need to be rewarded but I truly do appreciate when anyone can make our lives easier.

While most of my disappointment is projected on others, there are times when I find I have disappointed myself, Ella, or my family. Maybe it was because I forgot to make a phone call or because I was having a bad day, caved and compromised too easily? Or sometimes just not getting the outcome I had hoped makes me feel some type of way.

I am doing my best to give myself more grace and realize that not every day will be great, and most things regarding Ella take time. In this season, time seems to be my worst enemy.

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