A new chapter... closer to home!!

Chloe's view

Chloe's new room

It has only been 36 hours since we received such wonderful news for our family. Chloe has been granted a long term bed at St. Mary’s in Bayside!  She is now only a quick 20 minutes away from our home. 

 “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