Ella started school three weeks ago and in true Ella fashion, the universe surrounding her wanted to keep us all on our toes. Just when this mama bear was looking forward to hibernating, I was lured from the woods to prepare for battle.

The first two days of school were magnificent. Ella was so happy to be back, enjoying her time in class with her friends, and seeing her old therapists. We were even treated to a new enthusiastic substitute bus driver who was singing and keeping Ella entertained on her ride to and from school. We had new nurses training and it seemed as though we were finally getting back into a routine.

The summer had been hard. We lost two of Ella’s best nurses and she was feeling every bit of their absence. One was moving on for the betterment of her career, and as sad as we were to see her go, we always knew she was destined for greater things. The other felt underappreciated (not by us) and decided to leave for the betterment of her sanity. I can’t say I blame her.

Labor Day we hung out at home and quickly realized that our nursing situation was taking a turn. Due to various circumstances beyond our control, Ella lost three nurses that second week of school. Those losses resulted in multiple missed days of school. Days of school that Ella needs. Days of therapies that help Ella build her strength. Days of interacting with her peers and loving every second she is with them.

The reality of Ella’s life, and ours, is that she is fully dependent on other people. She can’t go to school without a nurse. She can’t clean herself without help, can’t move from point a to point b without someone bringing her, she can’t change the channel, she can’t get a snack, she can’t go get toys, and she can’t pet her puppies unless they come to her. All things we take for granted, she needs full assistance with.

The scope of that dependence is wide. We rely on our nursing agency to make sure she has nurses, her care team to make sure papers and documentation are completed correctly and submitted on time, and her doctors to call in refills and write letters of medical necessity so that there is no lapse in coverage. Steve and I are responsible for making sure her life saving medications and supplies are stocked and her equipment is in working order. Should any of those things not get accomplished the effects could be life altering.

Top that all off with Ella being non-verbal. While she is unable to tell us what she is feeling or thinking, over the last seven-plus years we have learned to read her body language. This past week her fatigue had increased and she was refusing to eat her meals. Some of Ella’s actions are behavioral and I know that she knows there are big changes happening. It’s been tough on us all.

My path away from hibernation was an exhausting one and filled with more obstacles than there ever should have been. The bright side of raising a special needs child fills your heart with love and gratitude. The dark side fills you with rage. The battle is always uphill and while we might get knocked down, we never stop climbing.

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