So much more than daily care comes with having a child. You are a parent, a nurse, a therapist, an educator, an advocate, a nurturer, a chef, and at times, a punching bag. They say it takes a village to raise a child and after having three children, I could not agree more.

In addition to our village, we are also fortunate to be part of a Medicaid program called self direction. Through this program we get money from Medicaid, for Ella, to help fund what we might need to help us with her care. One of the greatest benefits we have had is to be able to hire workers to come in and help us. We have had some wonderful people loving and caring for her over the last year and a half we have been part of this program.

The last week has been crazy. I have experienced a level of stress that I can only recall experiencing twice before, when two of my babies spent time in the NICU. Today was one of the toughest days though. Ella had another episode, her worst yet. It lasted longer and seemed more aggressive than the other two. When it was over she returned to her normal, happy self but those twenty seconds shook me. Thankfully we only had one today.

The good news is that her EEG has been scheduled. Next Sunday nurses will be coming to our house to set her up and will return twenty four hours later to collect the equipment. What an amazing service to provide to families. I am so relieved that I do not have to leave my house and take her to Columbia. That might have put me right over the edge.

This week has been filled with such great support, and one of my biggest thank yous goes out to our Community Habilitation worker, Dani. She has been here with Ella during most of her episodes and has done a fabulous job of keeping us both calm. We have been so fortunate to have her with us for over a year now and she has truly become part of the family. I don’t know what any of us would do without her.

Recently she wrote the most beautiful words about Ella and I wanted to share them with you. Dani knows Ella in a way that few people do. She has seen the good, the bad, the ugly, and keeps coming back to work with Ella to help her grow and learn new things. Dani was brought into our lives for a reason, and we are a better family for having her with us. She has perfectly captured Ella in her writing and every single word rings true.

It made me tear up, not going to lie. It’s an amazing thing when you know your child is so loved by others. Dani is without a doubt Ella’s best friend and we are so blessed to have her. Pretty sure Jack has a huge crush on her too!

❤️

Hello all! My name is Danielle, otherwise known by the Zurlnick’s and many others, as “Dani”. It has been a little over a year now since I have started as Ella’s Community Habilitation worker and I can honestly say it has been the most eye opening and life changing journey I’ve been on thus far. 

I will never forget walking into the Zurlnick household for our very “formal” interview and letting them know that I had no prior experience working with special needs, but that I was a very experienced babysitter and I could offer love, compassion, patience and friendship. It took me the first day to realize that that was all I needed with Ella. I can’t hide the fact that I was extremely nervous, but within the first week I had picked up on Ella’s routine, her mannerisms, her expressions, her moods, her feelings, her preferences, her communication and her wants or needs. Yes, Ella has special needs and her daily life is no where near the norm of others, but she’s so amazingly different than any other kid that I know and that has nothing to do with her level of ability or struggle. 

The following are key things about my Ella Bella: 

She has a heart like no other. She has a smile that can light up any room. She has a giggle that travels miles and if you’re lucky enough to experience it, you’ll find yourself giggling along. She has an amazing ability to draw in any person that she meets and everyone wants to come back for more because of the love she exudes. She has more strength, courage and fight than I would ever achieve in my lifetime and she’s reached that in only 5 years time. 

On a more personal level, she has the most fascinating addiction to the show “Goldie and Bear”, which leaves me singing along to songs and reciting lines from it every day and night. She has perfected the art of falling asleep 5 minutes into a neighborhood walk. She’s able to house more food than any other 5 year old that I know (believe me give this girl Shepard’s pie and if you blink to fast it’ll be gone). She has her very own way of communicating and although she is nonverbal, she so clearly shows her preferences, her frustration and her emotions. She has a pair of lungs that when she has her freak outs it would scare the light hearted away, but I still smile at her and know not to take it personal because I’m her bestie and it’s probably just from fatigue or frustration. She has a bite like no other (only the special ones get to truly experience that one). She’s got a funny way of smiling at you at meal time, then covering you in whatever food was in her mouth. She also has a cuddle that will make anyone go weak in the knees and I get to experience that almost every day that I am with her!

Aside from getting to know Ella and understanding all the challenges and hurdles thrown her way, I’ve gotten to see a new perspective on special needs. Since being Ella’s com hab worker, I have seen and experienced the aftermath of procedures, the success of therapies, the failures of therapies, insurance calls, uncontrollable outbursts, her experience of special education, but most importantly I’ve seen love, growth and perseverance. No matter what is thrown her way, Ella rolls with the punches. Every single hardship she is thrown, she overcomes and she continues to grow and progress every month that I’m with her. After being with Ella for a little over a year now, I can honestly say that I have never experienced a bond and love like I have with her. Although to many it may not seem like much and at the surface I look like a glorified babysitter, but to me… it has changed my life. I have experienced sadness for her, frustration for her, happiness for her and excitement for her. I have wanted to cry for her, fight for her and cheer for her. Many know I want the absolute best for her and that everyday I work with her, or don’t, that is exactly what I will strive for. All of these things will never change, even when my time is over as her com hab worker. Until my expiration date arrives, I will continue to take the most amazing pictures of her (Courtney as my witness), watch both seasons of “Goldie and Bear” as many times as Ella sees fit, walk around the block as many times as my own two legs allow, I will get bitten and screamed at, I will get cuddles and giggles and I will get so much fulfillment and joy from spending my days with her. 

Ella has such a special place in my heart and it will only ever be for her. I am forever grateful for having my time with her and seeing her blossom into the most amazing little girl. It is true when they say angels are among us because she is living, breathing proof of that. 

Follow our journey on IG @zurlnick_five

Or

Sign up with an email at the bottom the homepage

Or

https://www.facebook.com/groups/545639302765561/?ref=share