Cerebral Palsy Experience Journal – Stella | Boston Children’s Hospital


Stella stopped moving in utero for
about two weeks prior to her delivery. I was in and out of the hospital, checking her heart rate and
stress levels and things like that. And I went in for an ultrasound
and she was non-responsive. So, she was brought over immediately
and delivered probably an hour later. She spent about eight weeks in the NICU, and at that time they had told us that there was some potential for her
to have some sort of cerebral palsy. Cerebral palsy has so many different layers to it. I didn’t know what that would really look like for her. Whether she was gonna be nonverbal, or
be able to walk, or have any independence. I wasn’t sure if school’s gonna be an option, I didn’t know if she’d be in a wheelchair, I definitely was scared. There’s not one inch of me that wasn’t, and there wasn’t one inch of me that didn’t cry a lot. I would say the first month of leaving NICU
was probably the worst time of my life. She was unable to coordinate with eating, so she desatted a lot. So we had a lot of 9-1-1 calls, you know,
to them come out to resuscitate her, a lot of sleepless nights. Um, she also had reflex, so, she, anything you did feed her, she would
be throwing up pretty much immediately. So, she slept sitting, I slept sitting up with her on
me, for probably the first four months of her life, until we could get that under control. So, it was you know, just a lot of kind of trial
and error that you really just aren’t ready for. When Stella first went to preschool, it was definitely hard to trust that they
were gonna take care of her the way I do. It was a conflicting emotion, but at the end of the day, I felt really happy for her that she was part of it, even though my own personal struggles were there. My parents would come up and visit and watched me kind of struggling with getting her down on the beach. My dad is a retired engineer, and he came up
with this concept of a pediatric beach buggy. He took the measurements from her wheelchair
at the time and made a first one that would fit her. It literally changed her whole life, like going
down to the beach was so much easier. I could just put her in the chair and
we could go over all types of terrain. Even just going like on field trips for her,
like we went apple picking on a field trip, and we were able to bring the buggy. And then we realized that after we
had her buggy, that we were able to take her out for like just walks along
the street, which was just awesome. At that point I just realized that I couldn’t
be the only one to have one of these. It was just one of those moments that I said, you know, this totally changed us being able to access just everyday things that people kind of take for granted. I just felt like we had to pay it forward. I said to my dad, what do you think about starting a non-profit and donating buggies to families that need them? That started Stepping Stones for Stella. To have over 400 families have one
and just the stories that they send me, like, “my child’s never been to
the beach, this is their first time.” Just to know that we’re doing that
for them and changing their lives, like my dad changed ours is just, I don’t know. It’s just amazing, actually. Seeing how far we’ve come, I couldn’t be more proud of Stella. It was a lot of work, I wouldn’t change a thing. I think that the hours we spent in
therapy and doctors appointments, fighting to get her what she deserved and needed, has given her what she is today. It’s not an easy road at first, it does get easier and it gets less scary.

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