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Wednesday, June 27, 2018

Timing

As many of you know, we had a rocky start to our summer with Madelyn being hospitalized for 4 days and needing to make 2 separate trips to the Twin Cities all in the month of June.  Happy Summer.

I often find myself laughing thinking "what crazy timing".

To really tell this story, I need to rewind about 18 months.  Madelyn was meeting with her palliative care doctor at Children's MN.  He said to us "have you considered applying for Make a Wish?"  I immediately said "what? no! we don't need that"  I left that appointment thinking what in the world, we can't be "make a wish people".  Our kid's condition can't be that serious.  NO way.

Then, 6 months ago, we were at a palliative care appointment at our local hospital for our quarterly meeting.  The social worker there said "has anyone talked to you about Make a Wish?"  I felt defeated.  I said we would think about it, but basically brushed it off.

Then, at the end of May, we received our parent newsletter from Gillette Children's hospital (another facility we now frequent).  In there was an article about a kid very similar to Maddie who received a Make a Wish.  The idea of a trip to Disney (which is a common Make a Wish) sounds horrible to me with Maddie.  An airplane full of people, no access to medical care for a couple hours in the air, a theme park full of more people, heat, humidity, and the obvious fact that Maddie makes her own schedule.  I could only predict that she'd end up being in the hospital when it was time to leave for the trip.  No thank you.  BUT, in this newsletter, this medically fragile child received a camper!  His family was able to take him on local trips, on their own schedule, and they always knew he had a safe spot to go.  This got me thinking.

After school got out in June, Greg and I decided to more seriously consider it, or at least look into it.  I filled out the initial application just to see if Madelyn was even eligible.  The next week, she was hospitalized and it totally fell off my radar.  I was sitting in the pediatric floor lobby reading a book when my phone rang.  It was a Milwaukee number.  My first instinct was to send to voicemail, but I picked up.  It was a Make a Wish staff member calling to get more information about Madelyn.  I talked with her and still didn't think much of it.  Maddie was sick in the hospital- I didn't really care about some potential wish.

Last week, our pediatrician let me know that she received some paperwork to fill out about Madelyn's condition and had submitted it.  So, we knew the process of determining eligibility was at least moving along.

Then, yesterday, we got the call.  Madelyn qualified for and is being granted a Make a Wish!  I was shocked.  I thought sure she might be eligible, but so are lots of kids, so I doubt they would pick her right away.  But, as we've known all along, Maddie is one special girl who steals a lot of hearts.

This will be a process over the next 6 months of meeting with staff, determining what Maddie needs/wants, and then actually obtaining the wish.  Our plan is to get a camper very similar to the one the boy in the newsletter received.  Make a Wish partners with a camper company and has made accommodations and adaptations many times.  We're hoping to get a camper that is wheelchair accessible, climate controlled, has the right outlets for her oxygen concentrator, and has storage for all her supplies!  It felt so "selfish" to be asking for this on the phone yesterday, but when I described it, the staff member just said "yep, that sounds appropriate for her!"  Now the process begins :)

So I titled this post "timing" for many reasons.  It took me time to come to terms with the fact that Maddie would even be eligible for Make a Wish, and what that really meant.  Like I said, 18 months ago I said absolutely not.  And now here we are.  These little coincidences and timing pushed us along and now we're at a place to receive a wish that our whole family will get to enjoy together.

The other timing piece was that when I received the call that Maddie qualified and was being granted a wish I was getting ready to go out.  Over the past year, I developed such a close connection with two of the CMN Hero moms.  I was meeting them for our monthly catch-up.  They "get me".  They have medical kids.  They know the lingo, know the hospital ups and downs, and know the issues you deal with in the community.  It's great.  But to get that call right before going to meet them was awesome!  Talk about timing.  Who better to celebrate with and who would best understand the importance and also the meaning behind it.  These women.  I could write a whole separate post about what it means to find friends who have lived what you're living, and maybe I eventually will.

But for now, I'll just say, timing is everything!  :)

Sarah

Monday, April 30, 2018

So many feelings in one short year

We recently had the honor of attending the Children's Miracle Network Emerald Ball.  It was inspiring, empowering, supportive, emotional, fun, sad, happy, and every other feeling rolled into one.  The video below was created for the ball. It played right before the live auction began.  At that auction, cakes went for thousands of dollars.  Madelyn's painting went for $1500.  It was remarkable to see the community open their (deep) wallets to support kids. 


This video is technically our grand finale of Madelyn being a hero kid.  We will still participate in CMN events (especially Miracle Treat Day and the Radiothon).  But this video sums up our journey.  Seeing the photos of Maddie from infancy to now as a 4 year old took my breath away.  It's hard to believe that one little girl has gone through so much in 4 short years.  She is such an inspiration and over this past year has opened so many people's hearts.  If you're reading this, I hope you find hope in our story. 

Friday, December 22, 2017

Our "Animated" Christmas Card

Like most moms I know, I spend a chunk of time figuring out our Christmas card.  What message do I want to send?  What should we wear?  I hope Maddie is awake.... etc etc.  Below is the Christmas card that we mailed out. 


But, I could've just sent out a simple piece of paper with a web address to summarize our family's year.  Last month, Madelyn's Hero Story was aired on WXOW.  We worked with Dustin Luecke to get footage of our family in the community.  As Madelyn's mom, I am protective of how others perceive her.  It was important to me that she didn't look sick or unresponsive.  We know all of the great things that Maddie can do, but she certainly has her moments where she'll just sleep through an event.  I had my fingers crossed that the story would show the Maddie that we know her to be.  And it did.


Merry Christmas!


Tuesday, November 14, 2017

Recent CMN Happenings

Click this link to hear our Children's Miracle Network advertisement, which is set to "Here Comes the Sun".
CMN Radio Ad

The Radiothon was such an exciting time for our family.  Madelyn's family members, friends, and school support staff showed up to answer phones during her hour.  And wow, were they successful!

Thank you to everyone who called in to donate!  We had 37 calls and raised over $3600 in her hour.

Team Maddie



Summit Elementary Staff
Maddie's Miracle Phone Bank Team




Up next for us is Madelyn's Hero Story, which will air on WXOW at the end of November.  We've been working on this with Dustin Luecke and are excited to share all the great things happening for Madelyn in our community.  

Thanks for all the support :)


Sunday, October 1, 2017

When the Bright Side gets harder to find

This has been a rocky start to our school year, and I have to say that I'm struggling to see the bright side of things.  As I write this, Madelyn is laying on the recliner next to me, hooked up to oxygen after a Sunday spent at the hospital.  These occurrences have somewhat become our normal.  In the 30 days of September, Madelyn has had 6 appointments at our local medical facility.  She's had 4 trips out of town for her specialty care.  We've become used to always being on the go after work and on our days off- a trip to St. Paul for a scoliosis brace, sure!  A trip to Minneapolis for an orthopedic procedure, why not!  Another trip to St. Paul for the immunologist, no problem!  That's our job as Maddie's parents- to make sure she gets the best care possible, wherever that may be.  It may be exhausting hauling a medically fragile child on a 6 hour round trip car ride just to see a doctor for an hour, but we've made it work. 

What gets challenging for me- the highly organized, always trying to be positive, constantly scheduled mom is the unplanned events related to Maddie.  This weekend was the Oktoberfest parade.  Maddie was sick with a cold at the start of it, and by that evening she was seriously sick.  The next morning, we're meeting with our doctor about respiratory supports and the pros and cons of hospitalization as it relates to her palliative care plan.  We're home now, but that doesn't mean she's better. That's something to get used to too.  We'll take over providing respiratory treatments and monitoring her oxygen.  I'll take off work tomorrow since Greg has taken off a lot these past few weeks.  We'll get through it. 

Seizures.  Another challenge for us.  They show up at the worst time.  Madelyn has had two prolonged seizures at school this month.  Each time an ambulance had to be called.  And each time, I was at work, in a meeting.  Getting called by your child's school to hear that an ambulance is coming for your daughter is terrifying.  What makes it worse is the logistics- telling your coworkers you have to leave, trying to find your keys, getting through traffic without getting in an accident, and making it to school to get to your daughter's side without totally falling apart.  One time is what you think of as the worst case scenario.  And when it happens again, it's hard to process.  Worst case scenarios can't keep happening, right?  I really don't wish this aspect of our life on anyone.  There are many amazing aspects of being a special needs parent, but this is not one of them.  Madelyn has recovered, and she will forget it happened.  But Greg and I won't.  We won't forget what we were doing when it happened or how we felt.  We won't get over the fear of it happening again, and furthermore the fear of what if she doesn't recover next time. 

We have absolutely no tie to St. Jude Children's Research Hospital.  But, like the rest of you, I see their commercials and I remember the phrase: "Be thankful for the healthy children in your life and give to those who are not."  For whatever reason, that phrase comes to my mind frequently.  And that's what I'll end with here.  Be thankful for the healthy kids in your life!  Send positive thoughts and prayers to those who are not.  Give us your patience.  I know that this will pass and we'll get through it (hey Madelyn is almost 4 years old!).  Help us remember the bright side. 

xoxo
Sarah

Friday, August 4, 2017

Giving Madelyn a Voice

Over the past year, I feel that I have been given a platform and duty to give Maddie, and kids like her, a voice.  As I shared one year ago, I was asked to write an article for Minnesota Epilepsy Group and Children's Hospital of MN.  This was a wonderful opportunity.  In January 2017, we were approached by Children's Miracle Network as Madelyn was asked to be a hero and brand ambassador for the next year.  Again, this was such a gift to our family.  Last week, I was extremely honored and surprised to be asked by Ron Kind's office if I would speak at a press conference with him regarding healthcare accessibility and affordability, as it pertains to children with special medical needs.  Needless to say, I was shocked.

We've done a few CMN events so far, and I have to say that I leave each event feeling more empowered than the last.  I give our family's speech in front of the 100 or so people at said banquet, and I feel supported.  I am becoming more and more comfortable sharing Madelyn's story.  And, I am also seeing the good that comes from it.  There is such a need for people with disabilities to be better understood, to be included, and to be supported in society.  After each speech, I have had community members approach me thanking me for sharing our story, and more importantly, thanking me for the greater understanding that they now have.  I can literally feel people's compassion and acceptance grow in that room.

Thank goodness I had had these positive CMN experiences as my foundation to public speaking.  When a congressman asks you to speak at a press conference, you don't say no.  :)

Below is the 23 minute, unedited press conference.  I speak from 7:10-10:08 if you want to skip ahead.



I am so thankful for these opportunities, and I look forward to what is it to come.  I'm confident that this won't be the last time I climb my platform and give Madelyn a voice.  

Thank you for watching!

Monday, May 15, 2017

She will teach them....

Madelyn is wrapping up her first year of school as an Early Childhood student. Last fall, her extensive IEP was written.  One of the therapists on her team wrote "besides her above mentioned challenges, Madelyn also has many gifts".  She went on to write "she will teach them about patience, gratitude, love, and compassion".  This was written in reference to Madelyn's impact on her classmates.  However, anyone who knows Madelyn would agree that she teaches this to everyone she meets.  This was one tiny section of a massive document, but it has stuck with me all year and I constantly find myself repeating it in my head. That sentence sums up how Madelyn has shaped us as parents and as people.  That sentence also is a beautiful description of how she's been received by her classroom and school community.

As a parent, it's hard sending your kid to school.  It's especially hard when your child is medically fragile and can't tell you how her day went.   But, in true Madelyn fashion, she has shown us that she can handle it.  She has blossomed over these last several months.  She's smiling and laughing at her teachers.  She shows excitement at school assemblies.  She drives her Mini Cooper around PE.  She participates in crafts, listens to stories, and enjoys music time.  She's watching her peers and taking it all in.  All we've ever wanted is for Madelyn to feel loved at school and to be accepted.  And she is.  There are obvious challenges, but that therapist was right.  She has taught her classmates and her staff about patience, gratitude, love, and compassion.  And we become more proud of her each and every day.

Swinging
At a school assembly

Using scissors for the first time!

Planting her Mother's Day gift
Not impressed with Dr. Seuss day
Driving around PE class

Painting with her classmate