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| Chloe's view |
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| Chloe's new room |
“It was the
longest of long shots but they made it happen.” This was the only way Chloe’s
social worker at Sunshine could explain it.
As many of you know, St. Mary’s was a part of our lives
while Chloe lived at home. She
attended Early Intervention (EI) at their facility and where we placed Chloe
for respite care when Reth and I needed a break. Unfortunately, their EI funding was cut and we continued her
care at home. When we decided that
long term care was best for Chloe and our family, we had hoped that St. Mary’s
would have bed availability. The
waitlist was long but Chloe had been placed at the top on account of our
commitment and involvement with their community. Over the last couple years, St. Mary’s has gone under an
amazing multi-million dollar renovation and built a magnificent, new rehab/hospital
facility. When their new doors
opened, unfortunately, the decision was to close their admissions to long term
needs and focus on short term rehabilitation.
We were upset to hear that we no longer had an option for a
hospital closer to home. However,
Sunshine Children’s Home (initially a division of St. Mary’s) has been such a
blessing and we were happy that Chloe was being loved and settling in well in
Ossining. We formed ties with the
community in Westchester and were pleased with our decision. Chloe has really grown over the past
2.5 years and they have brought peace to our lives. We planned to make this work for as long as she needed to be
there. Our life at Chloe’s made
sense – we made wonderful relationships with the staff at Sunshine both on a
personal and professional level, we shared Mass with them during special times,
Olivia had playdates with staff children, we learned to have
wheelchair/bike/stroller races around the pond, Jackson showed off his first
steps and words in the lobby area.
We also built a little life in Westchester with having our routine hotel
stays, eating at our favorite pizza/pasta joint, shopping at the market or the
Mall, spending time in Tarrytown, and finding special local family activities. It worked and we made it as wonderful
of an experience as we could BUT it was always so far from home. It’s not just a quick little ride; we
had to plan ahead with travel time, meals, naps, and play/visit time.
We made it work but always hoped we could make a better
life, a better way to manage everything.
The phone call from St. Mary’s on Wednesday literally shook us and left
both Reth and I speechless. We
would never have been able to get through any part of our journey without the
many advocates we have met along the way.
Each person that has met or heard our story about Chloe and our family
has helped us take another step in our healing process and we are humbled by
everyone’s kindness and so appreciative of everyone’s efforts. The admissions officers at St. Mary’s
had kept Chloe’s name close to their hearts all this time without us even
knowing and had been advocating to bring her closer to home even when the
decision had been made to not offer any long term bed. We found out that our Sunshine team has
also been quietly, yet aggressively, advocating for Chloe to their colleagues
at St. Mary’s. The Admissions team
ignored the rejections and kept bringing up our family needs. When an opportunity came to overturn
the initial decision and allow for a long term patient admission, Chloe was the
first person on the list!!
So, in the last day and a half, through much shock and
excitement, we toured the newly built St. Mary’s hospital in Bayside, filed
Chloe’s paperwork, packed up her Sunshine belongings and moved her into her new
space. It’s gorgeous and spacious
and bright. They have a state of
the art rehab floor, therapy pool, new accessible playground with a little pond
and mini golf (one of Olivia’s fave features). Chloe’s room is big and overlooks the bay. She shares her space with one other
girl. And, the hospital allows for
us to stay bedside, if desired.
There is a big common area for Olivia and Jackson to play with their
sister and enjoy activities and the outside pavilion is great for our family
and friend gatherings. As we settled Chloe into her room, we met a lot of the
staff and were reunited with some familiar faces who remember our baby girl
from when she attended EI and respite care. It was a great day and a beautiful beginning to this next
step.
We will miss our Sunshine family. Words cannot express our gratitude to them for their love
and care of Chloe. They gave her
so much. She was happy and calm
there; she grew strong and gained independence. She thrived and learned so many things. I will miss them dearly. I cannot thank them enough for
the peace they brought to my family and me. It has never been an easy decision to bring Chloe to long term
care but Sunshine was inviting and always listened to our needs both for Chloe
and for us as a family. They
maintained such a wonderful and respectful way with dealing with our family
that I knew I was always mom no matter where she lay at night. This part was ever so important to
me. I strive to be a good mother
everyday and it’s a hard thing to be when your baby is not with you, so for
that sentiment to stay with me and to know that I am still a part of her and
her life was priceless.
I know our move to St. Mary’s will be a great one and we are
excited for new possibilities and adventures. We look forward to being a part of another amazing
community. Olivia is thrilled to
have her sister closer and we are excited to have Jackson learn about Chloe’s
strength and beauty. Thank you
everyone for all your continued support, positive thoughts and prayers. We invite you to come visit and see
Chloe’s new home and be a part of her life. Please let us know and we hope to see you soon.
Much love,
Michelle, Reth, Olivia, Chloe and Jackson
