Lily rocks out

Lily had her End of Year program at school last week and I recorded this awesome video for you all to watch! She's a rocker:)

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.

Click here to view these pictures larger

Baby Rowan and Lend A Hand

When we found out Rowan had Lissencephaly back in September, I remember wanting to be quiet and I didn't really want people around. I just didn't know what to say, and I didn't want to ask for help. Even if I could recognize we would need help, I didn't have a clue what that would entail.

I'm not sure if it's a Midwest thing, or a love thing- but our friends wanted to do something for us and to show their love and support for Rowan. One day a friend called to say they wanted to put on a benefit for us.  I said, 'no- please don't.' And I meant it. I didn't want anyone feeling sorry for us and I didn't want the attention that would come with an event like that. I'm not saying my reaction was correct- I think I was so numb and confused, I just didn't know what to do or say.

About two seconds after I said, 'no', I realized that it was not for me to decide how my friends should act or what they should do. I needed to let go and allow them to take the actions they felt necessary. They wanted to have a benefit for us, and I needed to allow them that...

And let me tell you something- It was one heck of a benefit! Our friends, family, and the community were amazingly generous- and we were supported by DMF Lend-A-Hand, too.  Doubly blessed.

Us with Michelle... Notice Lily's awesome smile:)

Us with Jeana from Lend A Hand- again... Awesome 'cheese' from Lily.

Since this whole thing started, I've marveled at this community. I've been blown away time and time again at the nurses, caregivers, donations, cards, therapy providers, doctors, and businesses...
Our benefit was a huge success thanks to family, friends, and DMF Lend A Hand.

I wasn't able to thank all in the community who donated; there were just so many.
So- if you're reading this and you helped our sweet Rowan- thank you so very much. Fargo/Moorhead is an amazingly supportive community and we were blown away with love.
Thank you all.

Today, though, I want to let you all know what a wonderful organization Lend A Hand is.
Jeana Peinovich has taken care of us since October. She's emailed, called, and has loved our little family... We couldn't have been luckier to have her to work with and Lend A Hand along with all the families helped are blessed, as well.

A few years back, Jeana came up with the idea for Giving Hearts Day.  On February 14th, Dakota Medical Foundation matches funds donated to Lend A Hand along with other organizations.  The beauty of Lend A Hand, though, is that 100% of gifts are distributed to local families experiencing a medical crisis.

Please show your support for them and other local families.
Donate HERE.
Contact Lend A Hand:
Phone: 701-271-0263
Toll free: 1-877-977-5770
Fax: 701-271-0408
Address:
Dakota Medical Foundation
4152 30th Avenue South, Suite 102
Fargo, ND 58104-8403

Does prayer really work?

Yesterday I went up to the 4th floor PICU at Sanford to visit a sweet little boy who's fighting for his life.  All day yesterday I prayed and prayed. I thought about him and envisioned good energy traveling in his direction. I asked other people to pray for him and I woke up praying for him.

It struck me yesterday, though- the fact that so many were sending love and energy to this child and that I was praying so wholeheartedly for him.  I felt good about doing it and felt like it was helping.

Most people who know me and who know me understand I'm not a religious person.
I've often wondered about prayer, though, and my partner and I discuss matters of the soul, the spiritual, and of a higher power often. We discuss whether souls exist, where souls might go if, indeed, they exist and what happens after death.  We talk about prayer and how it might help- or who it might help.

I've thought for quite a while now that prayer and meditation are things we do for ourselves that lift our consciousness to another level. To me prayer is aligning my energy with the person or situation I'm focusing on.  If I'm praying or meditating on a certain situation occurring in my personal life, I feel prayer sorts out the conscious and unconscious enough to allow an answer to come from 'somewhere'. Is it God, I don't know- and I don't care, for that matter.

I think whether there is or isn't a God is none of my business. It just doesn't matter.  What does matter to me, is love and is sending that love out to people. It matters to me to look within, because that's where the answers are. We already know the answers to most things...  And I'm not saying this in a narcissistic way, mind you. I'm saying that God is within...whatever this God thing is.

We know the answers and we can affect people in ways we can't even comprehend. I truly believe- I know- that all of the prayers that have come for Rowan and that are still coming help. I know there are people who pray for us every single day. I know prayer works... because we're all connected.

What's my point, you ask? I'm wondering how you feel about prayer and the power behind it.

Oh, and please pray for sweet little Lucas.  He could really use it right now...

Benefit day

I've been thinking for a few days about the benefit that was held on Sunday for Rowan. I've wondered what to say and have wanted to make sure when I wrote I didn't leave out anything, didn't forget to acknowledge people, and that I addressed benefit-day with appreciation.

I sure hope I do that- and those who know me know I like to communicate with pictures.  Unfortunately, I was so busy on Sunday saying hello to family, friends, and thanking people for attending I didn't have my camera with me much.  I wish I'd taken more pictures- and some in color!

Anyway, here is the story about Rowan's benefit:

1. People drove from all over the Upper Midwest to show support and love to us.
2. More businesses and individuals donated items and hard-earned money than I can barely comprehend still today.
3. Friends spent two months preparing, promoting, gathering, and allowing us to take care of our son and daughter.
4. Even more friends gathered on Sunday to serve food, take tickets, set up, tear down, and head up the auction
5. My wonderful Grandma and Grandpa Mayer came- in addition to family on the Matz side, the Hammer side, and the Mayer side (all driving great distances) to see us and to love us.
6. DMF Lend-A-Hand showed support and promoted the event while matching funds.
7. We got to see people from every little niche of our lives; AA, family, work, school, ex-colleagues, nurses, caregivers, strangers... All friends, though. And we sure have loads of friends.
8. Cards have poured in since Rowan's diagnosis.
9. Prayers have come our way from all over the country.
10. Lily thought the party was for her and in the middle said, 'I'm so happy, Mommy- I'm so happy'
11. I forgot to take a picture of Michelle
12. I can't figure out how to write anything at the bottom of this post
13. People are amazingly generous.
14. Their generosity has inspired me to do the same.
15. We are so very lucky. Our life is exactly how it's supposed to be.
16. 'Thank you' will never feel enough to express our appreciation.

My Aunt (one of the people I want to be like when I grow up), Holly

My beautiful cousin, Becca, on her 17th birthday

Amundsons bidding on the guitar and amp they won for their boys

Grandma Joyce and Canyon

Grandma GG and my smart Uncle Karl

Dan and one of my favorite people, Rose

Our lovely friends took time from their weekends to work

More working friends- one I only just met

Olivia with lettuce-and a scarf

Lily had a blast- and was exhausted.