It’s no secret this past year has been a rough one for us and many times it’s challenged my faith.  In those moments when well-intentioned people say things like, “it’s all in God’s plan…” or “God only gives you what you can handle…”  When you have a sick child (and I would guess when you deal with any sort of devastating sickness, uncontrolled crisis in life), your perspective on statements like that changes.  I completely respect others beliefs and know that these things are only said with the best of intentions.  For me though, I cannot have faith and also believe that this was meant to happen to my little lady.  For me, things happen, they aren’t necessarily given to us so we learn a specific lesson, they just happen.  How you handle them is where the lessons happen.

Easter is about re-birth – a new start.  Maura has shown this past year how to keep faith even faced with these situations.  She’s shown so much strength and tenacity and humor through a pretty crappy deal.  We are so very grateful and thankful for all the wonderful things she has accomplished.  At times it’s hard to see past the feelings of wishing this hadn’t happened to her, but it did and if we don’t move on, how can we expect her to.  It’s still a work in progress of course, and there is still a lot of work ahead of her, but I have faith that she will continue to be a strong fighter.  I also have no doubt that their are countless lessons yet for her to teach me.

This week, through an amazing connection, Maura was able to meet another person who has JDM and is in remission.  They even have the same doctor.  I will never forget the look on her face when she realized that the person sitting across from her had gone through a similar struggle and was now doing okay.  It was amazing.  She also went to Children’s in Chicago to see one of the leading researchers in the nation for JDM and got an amazing report (thanks to all the wonderful care she’s received here in Green Bay 🙂 )  I was amazed at how compliant she was sitting in an 8×8 room for four hours and being poked and prodded and asked to do so many things that most people take for granted.  She’s definitely my hero.

So in the spirit of re-birth here are a few pictures of her doing things that a year ago were impossible for her to do.  There is an energy to her movements that weren’t there before because she remembers and truly appreciates the ability to spin, twirl, walk, and run.  She has incredible faith.

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I’ve had the pleasure of photographing this little guy a lot over the last year and half.  Sometimes he makes me work, but there is always fun and a lot of joy from him.  And he’s beyond adorable…

I love the juxtaposition of him at three months and then at 18 (and I also love seeing photos on client’s walls!  such a treat 🙂 )

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So we finally got the baby room painted and had time to put up the decorations!  We ordered vinyl decals instead of painting what we wanted on the walls and my back, arms, and neck are thanking me.  These only took about two hours to put up start to finish!  And I am so glad we put in a special order for my favorite quote from the Lorax instead of the standard one that comes with this set of decals.

Before – obviously 🙂

Prepped for install

And done!

And a little peek of a project I’m doing with Maura 🙂

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Last year, when Maura first got sick, I had just started student teaching.  Imagine student teaching, while your husband is doing his first year of teaching (and your health insurance is connected to that job) and then you are told that your child can no longer go to daycare and instead will need to go to the hospital for daily treatments for an undetermined amount of time.  At this point, I assumed that teaching would fall to the wayside.  All the work and time gone, all the tuition money owed back to the school.  So on top of getting some awful news concerning our daughters health, there was a bit of stress.  At this point, I had only known my cooperating teacher for 4 weeks.  I already knew she was an amazing teacher, mother, person to name a few, but I had no idea the amount of compassion, empathy, and trust that one person could show someone else that they hardly knew.  She helped me come up with a plan that allowed me to finish student teaching and also gave me the flexibility to be the one who did the majority of Maura’s hospital treatments (along with my mom and dad who were also amazing…).  I did finish student teaching and even ended up with my first teaching job working along side my cooperating teacher, talk about good luck!  Anyway, why tell this story now?  Well, I have never had the chance to really thank her for her kindness and support.  I’m hoping these pictures of her new little one and family can be a good start to a proper thank you for all she has done for me.

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I love when I get images like the following – they make it hard for me to find words to describe them.   All I know is when I look at them, I smile at the computer and they make me happy.  I can only hope they make the people in them feel that same way and remember those moments 🙂

I love how she’s looking at her mom in this one…true adoration in those eyes.

And I had to pull out the classic BUMP!!

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So one of my student’s asked me an innocent question today… “What’s the date Mrs. Couch?”  I thought for a minute and said, “It’s February 19th.”

And then it hit me.  One year ago today Maura was diagnosed with Juvenile Dermatomyositis.  (A word that my spell check still thinks I spell incorrectly because obviously I don’t take the time to add it to the dictionary – maybe in hopes that it really isn’t real.)

So where is she a year later?  Well, she has gone through a lot.  When it all started she looked at me and said,  “I’m scared Mommy – scared of how my body doesn’t work anymore.”  I have a now 4 year-old that knows what a PICC line is and how it works (but no longer has one 🙂 ). A four year-old that is mature enough to look at me and say, “Mommy, I don’t want to be sick anymore.  I just want to be a kid.”  For all the hardships she’s gone through this year, she is really doing quite well.  The daily medicine still masks some of our little girl and it won’t be out of our life for at least two more years, but for JDM that is a really wonderful prognosis currently.  She can run and jump and climb and one year ago, as I said here, I would’ve given anything in the world to see those things and we are grateful everyday for how much improvement we have seen.

What have I learned?  I’ve learned that we have the most wonderful friends, family, and healthcare providers.  The team of people that have banded together to take care of Maura this last year is full of loving, caring, amazingly brilliant people who just happen to have careers in healthcare.  We would not have made it through this past year without the support of our friends and family and a whole slew of others that we have met in the middle of this.  You all never cease to amaze me with your thoughtfulness and kindness.  (And your willingness to listen to me complain about the select few that have been less than supportive 🙁 )

A little “THHPPPTT” from our family to JDM

Hopefully one year from now the reflection will be similar to this and we will be another step closer to helping her get back to “being a kid.”

A kid that spent two hours making her teacher this valentine’s book.  I was almost jealous, but so proud that I couldn’t be 🙂

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I am going to try to approach each day like this little lady – knowing there is something good around the corner and looking for it with a smile…

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“So give me hope in the darkness that I will see the light
Cause oh they gave me such a fright
But I will hold as long as you like
Just promise me we’ll be alright”

– Mumford and Sons

This past month marks a year from the start of Juvenile Dermatomyositis showing its face in our lives.  It started with a rash on Maura’s cheeks that looked like wind burn.  So rosey cheeks combined with some strange lab results have caused me to lose sleep the last couple of weeks.  Through it all Maura’s strength looks great and her rhuematologist has made time to listen and take our concerns seriously.  For now we just keep doing what we are doing and watch closely, hoping it will all be alright.

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I woke up on Christmas Eve and didn’t really look outside, just ate some breakfast and got in the shower to get ready to go to my engagement session and start the holiday.  As I opened the garage door, I got really excited because I saw that it was lightly snowing!  And then I got to the parking lot and they got out of the car and pulled out an old school wooden toboggan!  Amazing couple + amazing backdrop = some of my favorite pictures ever

And then there was a bit of a snowball fight…

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2012 was a tough year for our family to say the least, but we did our best to keep life normal and enjoy the time we had together, no matter the situation.  Here’s a little video of our year in pictures.

(*note – for visitors that aren’t familiar with our daughter’s year and disease, please be kind as you see the changes that happen in her appearance due to her medicine.)

2012 Year in Review from Amanda Couch on Vimeo.

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