Tuesday, April 3, 2012

It takes a village.


I've had this post rattling around in my head for weeks now. I want to give it the justice it deserves, so I've waited to write until I had ample time... Turns out I need to make the time.

I've learned over the past several months how amazingly lucky my family is to live in Fargo. I almost can't find the words to effectively describe why I feel this way, so I'll tell you a few stories.

Warning: I will name names and name businesses. I sure do hope you're all ok with that!

Two weeks ago I was at Southpointe Pharmacy at the South Sanford location picking up some medications for Rowan.  Some things to note: 1. We call in for re-fills almost weekly. 2. Rowan is on a Ketogenic Diet, which means all of his medications must be sugar-free or it will really mess with his seizures and ketosis. 3. Often his medications must be specially ordered or made 4. Rowan is on around 9 or 10 different medications.
I bet you're wondering if I'll get to the point....  Point: When I call in to Southpointe, I ask for Jeff. Jeff answers and I say, 'Hi, Jeff.  It's Erin Mayer. I'm calling for some refills.' And you know what? He remembers who I am, knows my son's name, knows about his diet and his special needs. He's taken the time to learn about us... how nice. The last time I was in he asked how our little guy was doing.  Amazing.

Rowan receives therapy from Southeast Kids, as well. Beth visits Rowan a few times a month to help him learn and gain strength. She's let us borrow so many aids and devices. She's offered our family advice, has been such a gentle rock during our learning period...  I can't believe how lucky we are to work with her.  Fargo.

Linda from Southeast has come to see Rowan, too- She is a vision specialist and is conducting some assessments on him to determine if he's got CVI and how to work with that if he does.  Linda left Rowan and his caregiver a hammock-style swing that she was gifted.  He loved it so much she gave us a second one for our home- again, a gift.  Amazingly generous.

Rowan was in the hospital a couple of weeks ago. He was at Sanford on the 4th floor.  Nurses Julie and Adrianna took such loving care of us.  Dr.s Lydia, Stevens, and K listened to us and understood that we were advocates for our son. That we weren't leaving until we had some answers- and they didn't make us feel guilty for that. They spoke with our Neurologist at Mayo and ran more tests. They were a wonderful team and I thank them for that.
Nurse Julie even mailed a shirt to our house! (Turns out t wasn't ours, but she thought we'd forgotten it... )Thoughtful, to say the least.

We work with Easter Seals here in Fargo.  Debbie, who we've worked with for a month or two, adores Rowan. She feels it's her job to 'love these little kids until they go to Heaven'. She's been a dream to get to know, but she called us the other day and was quite emotional. She explained that she couldn't work with Rowan any longer because she's already working too much with another sweet little girl and was getting too much overtime. She'd been trying to make things work so she could see both kids- but was too committed with Lucy.  She is lovely- sweet, honest, and so compassionate. We'll miss her.
Maria, coordinator at Easter Seals, is patient and wants to help us get the best possible respite care for Rowan. We're blessed.

We've made friends with DMF Lend a Hand. They've loved us and have taken such good care of us. We're so lucky to have worked with their team.

Our neurologist at Sanford, Dr. Lindley, has called me directly countless times and at all hours of the day and night.

Our neurologist at Mayo has done the same.

Our primary, Dr. Stephanie Hanson, keeps herself updated, follows up, and knows exactly where we are at with almost all aspects of our children's care.

Nancy at Southeast Human Services more than a good resource- she's OUR advocate. She seems to be the center of everything. Facilitates trips to Mayo, reimbursements, therapies, respite care.

The community came out in droves to our benefit. And if people weren't able to be present, they donated, sent cards, and loved us from afar. Amazing.

NDSU's Wellness Center, where Rowan used to frequent, made a special book for him and saved donated change from the kids.

Further, family and friends have offered unending love and support.

Would we have all of 'this' in other parts of the country? I really don't think so. I think our community has blessed us- and if you don't know how lucky you are to live in Fargo- at least you know how lucky we are...

Thank you.



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