Happy 4th of July! Today truly is one of my favorite calendar holidays! The parties, the fireworks, the patriotism…what’s not to love? God bless America!

Ella didn’t have a great day, and I hate that I have to keep reporting that. I am convinced more than ever that the majority of her discomfort is GI related. I watch her struggle almost every day and it literally breaks my heart. Her butt wiggles and she screams and screams and screams. We have taken her to multiple specialists and asked her pediatrician over and over if there is something else we can do. Each time we get recommendations that don’t work. We just started her on a digestive enzyme and are seeing results, but she is still very uncomfortable.

I read so many stories and know of so many people who struggle daily to take care of their special needs children. People whose situations are far more dire than ours. Last night I read of a woman who went to the bathroom, and while she was in there her daughter ripped the trach out of her neck. Mom came back to the room and thought she was sleeping. A total of ten to fifteen minutes passed before she discovered what happened. She has currently in the ICU unresponsive and the doctors don’t think she will make it. This baby is close to a year old. Simply heartbreaking.

Having a non verbal child means always guessing what you think is wrong, or assuming you know what they want. At times we have tried multiple things to calm Ella. Sometimes we win. Sometimes we lose. Today we lost. Twice. It was just a bad night for her, and despite our best efforts she was miserable for most of it. She did perk up when the fireworks started. She loves to be entertained.

I imagine Ella has many thoughts and gets frustrated when she can’t express them. This is where I think we see her at her worst. She gives me the sad eyes and real tears start streaming down her face. At that moment I want nothing more than to jump inside her head and know what she is thinking. I also want to scoop her up in my arms and take all the pain away.

Life isn’t fair and I can wholeheartedly say that no child deserves to live a life with a disability. I do believe though, with every challenge life throws out, there is something to be learned from it. With Ella we have learned so much. The most important thing being empathy.

Today is one day of many, and despite it not being the best we were still able to enjoy a great night with friends. We realize and accept the fact that all days won’t be good days, and know as frustrating as they are for us, they are even more frustrating for Ella. I have said this before, but it’s so important to remember. We should all try to be more patient with our kiddos when they are struggling. Special needs or not, being a kid is hard.

Check today’s Instagram stories out at:

https://www.instagram.com/zurlnick_five