It was a long weekend thinking about the meeting that took place this morning. Up until now, we have been getting services for Chloe through an interim plan. Today we sat down with a city official, our service coordinator, and an advocate from the agency we have been using and worked out a new plan for more services.
It was hard to gear myself up again to retell Chloe's journey - to talk about what life was like before and how it is now. I cried last night as I set out old pictures of Chloe before she got sick. It's so hard to create a picture of how beautiful and full of life she is so we have always displayed a series of pictures taken just weeks before her hospitalization. It's still difficult to look closely at those pictures but at the same time you find inspiration as well. I typed out highlights of her therapy so far and our goals as a family both short and long term. When I woke up, I was exhausted from tossing and turning. I worried that I wouldn't pull myself together, that I wouldn't fight as hard as I should. How could I really make them listen and hear what I am asking for - to bring Chloe back to those moments before she became sick.
I woke Chloe a little earlier this morning so I could spend some time with her before the meeting. I became so wrapped up in our play that I forgot about last minute prepping for the meeting. I only had time to gather some paperwork together.
In the end, my playtime with Chloe reminded me of what really needed to be done - I needed to be mommy and speak from my heart. I decided not to put Chloe down for a nap. I wanted her by my side during her meeting. I wanted her support. I wanted her energy. I wanted this team to see who she was, how far she has come, and how much more can be done to help her along.
The meeting was painless. The city official who came was the same one we had for our interim meeting so she already knew Chloe's story. What made this even more pleasant was that she knew what my goals have been from the beginning and I could talk to her about the progress Chloe has made in just a few weeks. She was happy to hear that therapies have made a difference and she granted our services to continue. So, we begin a new plan in the next week or so. Chloe and I will now have a routine that will include 3 PT, 2 OT, 3 Speech with feeding, 2 Vision and 2 Special Instruction sessions. We have also been given a social worker to meet with me once a week for an hour to help me get through paperwork and have a support for me as a parent. Our service coordinator has also arranged for an evaluation to be done for adaptive equipment - stroller, chair, bath chair, stander, splints, etc. We have also begun filing an application for respite services so that I can take a break once in awhile.
We are so thankful for the services that have been offered. We will meet our new team over the next few days and pray that we all form solid relationships with them.
Thank you everyone for all your comments, messages, and emails of support.
Much love,
Michelle, Reth, Olivia and Chloe
No comments:
Post a Comment