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.
Wednesday, March 21, 2012
Routine
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.
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.
Friday, February 10, 2012
Sweet girl
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.
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).
Love,
Mommy
Monday, February 6, 2012
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.
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
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
Wednesday, January 25, 2012
The strongest person I know
Last week I had prayer on my mind and there was some wonderful discussion on BlogHer. Over 1700 people read the post, which is testament to the site and to its reach throughout the world.
I have continued prayers for Lucas- whom I'm happy to report is on the mend, off of his ventilator, and may come back to Fargo from the U of M Hospital in a week or so. What a difference a week makes. Lucas went from critical condition and a helicopter ride he might not have survived to sitting up, looking at books, and smiling. He's a fighter, that's for sure. Prayers, energy, medicine... whatever you'd like to attribute his improvements to; he's improved.
This type of stuff changes you, you know?? This having a sick child, setting up camp in the hospital, wondering all the time if something will happen... I'm sure you're thinking I'm saying something so obvious; of course it changes people. But I mean it REALLY changes you.
I'm fortunate to know Lucas's mother and to have spent time with his family. We've been up in the hospital two or three times together and have a pretty good understanding of each others child's conditions. And there's something about that... the knowing what you know you'll go through. The knowing of the struggle that awaits. The knowing that the life you planned is going to be totally different and will include excruciating heartbreak.
'My guts are different' is the only way I can really describe how I feel since Rowan's diagnosis. My heart, my guts, my cells. All have changed. There are some things I just don't care about anymore. I have had a change of focus and now appreciate so much I feel I didn't even see before. I'm overjoyed by some of the smallest things Rowan does and by what may seem to others to be little
accomplishments. Lately, for example, he's been going up on his knees when lying on his tummy. He tries to use his arms a bit more, too. This is huge, my friends. I'm so sad to share that I kind of gave up for a couple of weeks after we brought Rowan home from his first two hospital stays. He was so lethargic and was nowhere to be found...My baby boy was just gone. I thought that he'd remain sedated and limp- and I conceded. I wasn't giving him any credit for how his sweet little brain could process when not wrecked with seizures. I didn't have a clue what he was capable of. I sold him short.
Now, thought- expectations have changed. He's in therapy and seems to be doing well. He's, of course, no where near where other one-year-olds are. He can't sit up, can't talk, cannot grasp anything for more than a second or two... but he can change your guts.
I wonder what the future holds for our little boy? I am excited to watch him touch others and learn in his own way at his own pace.
I know one thing; he has made me an entirely different human being... and for that, he's the strongest person I know.
I have continued prayers for Lucas- whom I'm happy to report is on the mend, off of his ventilator, and may come back to Fargo from the U of M Hospital in a week or so. What a difference a week makes. Lucas went from critical condition and a helicopter ride he might not have survived to sitting up, looking at books, and smiling. He's a fighter, that's for sure. Prayers, energy, medicine... whatever you'd like to attribute his improvements to; he's improved.
This type of stuff changes you, you know?? This having a sick child, setting up camp in the hospital, wondering all the time if something will happen... I'm sure you're thinking I'm saying something so obvious; of course it changes people. But I mean it REALLY changes you.
I'm fortunate to know Lucas's mother and to have spent time with his family. We've been up in the hospital two or three times together and have a pretty good understanding of each others child's conditions. And there's something about that... the knowing what you know you'll go through. The knowing of the struggle that awaits. The knowing that the life you planned is going to be totally different and will include excruciating heartbreak.
'My guts are different' is the only way I can really describe how I feel since Rowan's diagnosis. My heart, my guts, my cells. All have changed. There are some things I just don't care about anymore. I have had a change of focus and now appreciate so much I feel I didn't even see before. I'm overjoyed by some of the smallest things Rowan does and by what may seem to others to be little
accomplishments. Lately, for example, he's been going up on his knees when lying on his tummy. He tries to use his arms a bit more, too. This is huge, my friends. I'm so sad to share that I kind of gave up for a couple of weeks after we brought Rowan home from his first two hospital stays. He was so lethargic and was nowhere to be found...My baby boy was just gone. I thought that he'd remain sedated and limp- and I conceded. I wasn't giving him any credit for how his sweet little brain could process when not wrecked with seizures. I didn't have a clue what he was capable of. I sold him short.
Now, thought- expectations have changed. He's in therapy and seems to be doing well. He's, of course, no where near where other one-year-olds are. He can't sit up, can't talk, cannot grasp anything for more than a second or two... but he can change your guts.
I wonder what the future holds for our little boy? I am excited to watch him touch others and learn in his own way at his own pace.
I know one thing; he has made me an entirely different human being... and for that, he's the strongest person I know.
Wednesday, January 18, 2012
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...
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...
Tuesday, January 10, 2012
Ouch
I really don't like creating a blog post without a picture in it, but since I've been too lazy to upload new images from my camera lately, this will have to do... (and a warning, that this post probably won't be super flow-y)
I'm sorry, I guess, for people who come to this blog and think I write about Rowan too much, or who get tired of reading about how I'm feeling... but this is really how it is, I guess, so it's what you get.
So much has been good lately; my relationship with Steve has gotten better and stronger, Lily is great and is an expert at using the potty, and Rowan's been healthy and seizure-free.
I realized the other day, though, that this won't last forever with Rowan. His seizures will start again- it's just a matter of time. I was telling someone it feels like I'm just waiting for the dropping of the other shoe. Then this weekend I thought I noticed some more Infantile Spasms...
We adjusted one of his medications again and he seemed really happy this morning again, which was nice to see. I know we'll be fighting seizures forever.
I've been thinking about our little boy so much lately. Those who know us know that Rowan's not the best sleeper. At all. In fact, he really sucks at it... So we've tried something a little different with him to try to get him to sleep better and so he doesn't wake Lily up: We put his mattress in our walk-in-closet and built a little pillow fort around it so he can't slide off. He gets his space and Lily gets hers. We did this so we could try to re-train him to sleep without waking up every two or three hours to eat or to play. He seemed sturdy enough to try this and it worked well for a week or so. The past few nights, though, he's been pretty fussy and just can't seem to sleep for too long at a time. I go in when he's crying at night and the look on his face is so sad to me- but I'm not really sure why. I guess I just wonder what he's thinking or how much he understands. I hope he's not scared, is my point. Not of the closet- but just of the dark and of lying there...
I was thinking last night about the day we found out, again, and was just so sad. I guess I'm just sad today... but a good thing has happened, I think. A woman emailed me who lives in the area. Her daughter has a diagnosis surprisingly similar to Rowan's. Reading her blog broke my heart all over again... for her and for us.
Don't get me wrong, I see the good- I have to. I count my blessings and I try to stay positive. It's such a strange dance- the one with reality and hope and sadness and a positive outlook. I guess one just tries to not stay in one place too long- it's good to look at all sides.
My grandma and I talked the other day. She's amazing. She makes me feel like I'm doing a good job and I think the fact that she's proud of me makes me want to do better.
So again, I'll do better.
I'm sorry, I guess, for people who come to this blog and think I write about Rowan too much, or who get tired of reading about how I'm feeling... but this is really how it is, I guess, so it's what you get.
So much has been good lately; my relationship with Steve has gotten better and stronger, Lily is great and is an expert at using the potty, and Rowan's been healthy and seizure-free.
I realized the other day, though, that this won't last forever with Rowan. His seizures will start again- it's just a matter of time. I was telling someone it feels like I'm just waiting for the dropping of the other shoe. Then this weekend I thought I noticed some more Infantile Spasms...
We adjusted one of his medications again and he seemed really happy this morning again, which was nice to see. I know we'll be fighting seizures forever.
I've been thinking about our little boy so much lately. Those who know us know that Rowan's not the best sleeper. At all. In fact, he really sucks at it... So we've tried something a little different with him to try to get him to sleep better and so he doesn't wake Lily up: We put his mattress in our walk-in-closet and built a little pillow fort around it so he can't slide off. He gets his space and Lily gets hers. We did this so we could try to re-train him to sleep without waking up every two or three hours to eat or to play. He seemed sturdy enough to try this and it worked well for a week or so. The past few nights, though, he's been pretty fussy and just can't seem to sleep for too long at a time. I go in when he's crying at night and the look on his face is so sad to me- but I'm not really sure why. I guess I just wonder what he's thinking or how much he understands. I hope he's not scared, is my point. Not of the closet- but just of the dark and of lying there...
I was thinking last night about the day we found out, again, and was just so sad. I guess I'm just sad today... but a good thing has happened, I think. A woman emailed me who lives in the area. Her daughter has a diagnosis surprisingly similar to Rowan's. Reading her blog broke my heart all over again... for her and for us.
Don't get me wrong, I see the good- I have to. I count my blessings and I try to stay positive. It's such a strange dance- the one with reality and hope and sadness and a positive outlook. I guess one just tries to not stay in one place too long- it's good to look at all sides.
My grandma and I talked the other day. She's amazing. She makes me feel like I'm doing a good job and I think the fact that she's proud of me makes me want to do better.
So again, I'll do better.
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