I've been thinking quite a bit lately about our dear boy... For me, things seem cyclical. I'll have several weeks of strait-up positivity and then a crash back to reality. All is well, don't get me wrong. But I've found myself daydreaming quite a bit...
I've been imagining what Rowan would look like walking. I imagine opening up my front door and seeing him run over to me and giving him a huge hug. I wonder what words he'd be saying and how he'd be tormenting his big sister.
I wish I could see him sit up.
Walk.
Grab toys.
Hug me.
Talk.
So today I'm going to stay in this spot of wishing.
I wonder if I wish hard enough what could happen...
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...
I haven't been good about writing on here lately... I blame my iPad.
It seems it's much easier to just use that little thing to watch shows, check emails, and to stay connected. For some reason opening up this 'huge' computer has proven challenging!
I have been meaning to write, though, about so much. Every day I think, 'that is something to tell', or 'remember how that feels for the blog'. But then I get home and it all disappears.
Tonight, though, I am sitting on the floor looking at our Rowan and wondering about a couple of things. 1. I wonder if we have just gotten used to this diagnosis, or if we've accepted it finally- because I haven't cried about it in a while. That worries me, I think. I don't think I really want to accept it. Maybe I do. I don't know. I have noticed, though, that a lot of things have become routine in our house. I call the doctors several times a week or they call me. We check ketones with test strips and cotton balls. We make up ketogenic foods. We set up therapies, we get Rowan eye exams, we get his labs done, we order medication refills, we order special formula, we track mood, appetite, bowel movements, sleep patterns. We sign paperwork, meet workers, go to more appointments, get EEGs, upper GIs, chest X-rays, fax doctors, call doctors, have doctors speak with each other. And it's all become routine.
Scary how quickly that has happened.
2. I wonder about his eyes. Rowan's had a couple of visits from an eye specialist who is trying to determine whether he has Cortical Visual Impairment, or CVI. I think both Steve and I know he does. Some days he seems to see much better, but most days he doesn't track objects, has a difficult time focusing, doesn't have a flinch-reaction and seems to like gazing at lights. Children with CVI are also known to need more stimuli in other areas- and Rowan seems to really need a lot of movement. They're also more vocal... So I guess that's what's on my mind tonight. I think I'd just feel such relief to know he could see his sister and us. It really saddens me to imagine him not experiencing the world like we get to.
I wonder how he feels; on so much medication and being poked and prodded and measured and tested...I hope our sweet boy feels all of us loving him through it. I hope he knows that I carry his heart in my heart.
Here is a picture of Rowan on his 1st Birthday- What a handsome boy.
Dear Lily- I'm kind of at a loss for words right now. I sit here wanting to write a profound letter to describe how much I love you and how much you fill up my heart. I see this picture and all I can do is smile.
Tonight there aren't enough words. You're sleeping and I can't wait to start our day tomorrow- to just hang out together. We've got plan; we went over it tonight while you were lying in bed.
Wake up and you say, 'good morning, mommy!'
Snuggle on the couch and watch toons.
Decorate Valentine's Day cookies with frosting and sprinkles.
And that's pretty much it.
Saturdays are my favorite days because we can stay in our PJs and can enjoy each-other. Weekends are when we can really connect for longer than a few short hours, and this weekend is a special one. Your daddy is taking your brother to the doctor in Rochester on Sunday afternoon- and we get to spend time alone. I am so excited.
There are so many things I want to tell you, my dear... but tonight all I have is this:
I carry your heart with me (I carry it in my heart).
