In Memorium...

I was planning on posting Reagan's updates on life today, but I was looking back on posts from last year and putting together something to remember one of the most amazing women I've ever known.  Who lived her life quietly serving everybody she came in contact with.  I knew when I told her story last year that we didn't have nearly enough time left with her and indeed we had less than a year.  The other day we celebrated her life, but the story told in the bare facts of dates and places doesn't do justice to who she really was, so I am re-posting her story again today, because as I said last year, her story is Reagan's story too...

Living Legacy

I want to tell you a story that spans 4 generations.  The story of a simple lady who just loved God and loved her people, but in doing so taught me so much about being a mother to Reagan.  Mrs. J.  was a surrogate mother to my mom when she was growing up.  The kind of neighborhood lady who took in all the kids who needed someone to love them.  That makes her my surrogate grandmother.  And a finer one I couldn't ask for.  Her daughter was friends with my mother growing up  and her grandchildren were a few years old when I was born.  I was just a baby the day she called my mother to say her daughter had been in a bad car accident.  Sadly her husband couldn't handle it and took the children and left her despite her calling for them in her coma.  So Mrs. J.  cared for her.  Unfailingly, Uncomplainingly.  Lovingly.  I grew up sitting on her bed and telling her about my day never even thinking it was strange that she didn't look at me or talk to me.  We knew she could hear us.  This is how I learned that life has value and purpose no matter what.  She never woke up from her coma.  I was only a baby when she had her accident so I never knew her awake.  But I never thought her life was sad.  She was my mama's friend and I loved her.  For 32 years Mrs. J cared for her and I sat and told her about my day.  Some would say her life had no purpose.  Some would say that Mrs. J sacrificed too much.  But she was alive.  She was loved.  She taught me how to handle things that make others nervous.  She taught me how to see disability as just a part of life.  She taught me that hard is not bad.  She taught me how to be the mother to my daughter.  And she never said a word to me in her whole life.  That is purpose, and that is only  my story....she touched others.  This is her legacy...and Mrs. J's too.  Because she taught me too as I watched her care for her daughter without fuss or fanfare.  She taught us all that love is bigger than circumstances and life is not measured by "productivity".  She never considered her life a sacrifice nor her daughter's tragic.  She taught me how to LIVE the life you've been blessed with.  Her daughter passed away a few years ago having never woken up from her coma.  The only regret I have is that she was never able to meet Reagan and see the influence she had on our lives.  Mrs. J.  on the other hand treasures the snuggles she gets from Reagan.  She is having trouble with her heart now and is in a care facility at the moment but she made sure that she brought the toys that she always kept at her house with her so that when "her girls" come visit they can play with them (these are the same toys I grew up playing with...they don't make them like that any more).  The girls are always excited to visit and share pictures of their latest adventures and build extraordinary creations with those toys.

Today they treated us to a pet show with robot pets and a "museum"  with the most fascinating artifacts.

 I cherish these times for my girls because I remember being their age and playing with those toys and hanging with Mrs. J. and I know that we may not have these opportunities for very much longer.

 But these are her legacy...these little lives that have learned so much about caring for others from generations of good coaching in the most unlikely set of circumstances.  We love you Mrs. J!

....

She lived life until the very last, treasuring her family... including me and my girls... until the final day.  She celebrated every accomplishment and moment, first in my mother's life, then in mine, and finally in my girls'.  And now she is in heaven with her husband and daughter, the angels are celebrating her and her beloved savior is smiling on her saying well done my good and faithful servant.

Welcome Fall

It is October again.  My favorite month...have I mentioned that before?  I love fall...and Down syndrome awareness.  The really cool thing this year....Reagan totally gets it.  She knows what the blue and yellow is for.  She is growing into an adorable self advocate!  There have been a lot of changes in her world lately and she will do a bit of telling you about them herself.  Because she can do that now :)  I hope you are all still wanting your daily dose of Reagan in October because she is ready to share!

Farewell October

Ahh the last day of my favorite month again.  I have posted a few times about how I'm not afraid for Reagan complete with pics of her friends helping her and not leaving her out.  I don't need to do that this year...she showed the world that she's got it all by herself.

Adorable Anna knew what trick or treating is,  how to say it complete with signs,  how to charm the chocolate out of all the houses.  She tried to tell her life story to everyone...and they listened!

 It was lots of fun to have my three girls trick or treating together,  no stroller, no carrying, no playing catch up.

These girls are my world,  and they are each others too.  Happy mommy...now do you think they'll notice if a few Milky Ways go missing?

Bittersweet

Looking back I realized that two years ago Reagan had only been going to school for three days when the Halloween party happened.  She was shy and just barely getting to know what it was all about.  

Last year she knew her way around no problem,  knew everybody on campus and showed off her skills.

It struck me today as she led the way for the other kids...it is her last year here.  We will be doing that a lot this year...last Christmas program,  last spring program, and ultimately last day.  While it is fun to see her growing and developing so much, it is bittersweet because we have to say goodbye to special people who have helped her on her journey.  Today was her favorite aide's last day and there were tears and hugs all around.

This may be her last year in this classroom, but these three friends won't let that stop them from celebrating together I'm sure!

Dad's Perspective

Like Cadie, I always enjoy taking part in Shauna’s annual month long blog-a-thon. I thought I would post what went through my head in the days following Reagan’s birth in case someone out there can be helped by my experience. For those of you who frequent Facebook, and if you’re anything like me (or Shauna) it’s frequent, you know that Facebook has recently added a feature called “memories” that pop up occasionally on your news feed that recall Facebook posts or interactions you made on that particular day through the years. A few days ago a picture of Reagan’s that was originally posted 5 years ago popped up on my news feed and it reminded me of her birth and the days that immediately followed. 

The months before her birth were pretty routine and besides one little test that gave a very small indication of a possibility of Down’s Syndrome all her tests came back normal and that we could expect a normal pregnancy but for some reason I knew she had DS, despite telling myself that I was just being paranoid, I knew but didn’t really want to think of what that would mean in case my sense was wrong. When she was born and she got the diagnosis, there was no time to think about the future. There was talk of NICU and heart issues and it was the weekend so the Pediatrician’s office would be closed and so many decisions needed to be made seemingly instantly. So needless to say the first few days after she was born was scary, and anxious, and fuzzy. It wasn’t until after three or four days, after we were able to get her to the Pediatrician and were assured that she was fine for now, that the whole idea of having a baby with Down’s Syndrome hit me and how it would impact the future.
If you’re a parent, I don’t think I have to tell you how when you learn that you’re going to be a Dad, thoughts of the future pop into your head. You’ll have thoughts of playing catch, or teaching them how to swing a bat, or help them learn to drive, or take pictures of them when they go to Homecoming or Prom, or just be there to be a shoulder to cry on when a date goes poorly, or seeing them graduate, or walking them down the aisle or etc. etc…. I would be lying if I said that those thoughts don’t change or even disappear once you find out your child has Down’s Syndrome and I would also be lying if I said that that didn’t make me a little sad. Is that vanity? Is it that to some large degree we all want to live vicariously through our kids? But, I have this discussion with Shauna from time to time, while looking back at those early days and watching Reagan as we BOTH grow together. And I always finish it with this idea: Being a father of a child with Down’s Syndrome is AWESOME! It has a quality that you will never know unless you experience it for yourself. She is the heart of this family and she can bring brightness to even the saddest of days! In just five years she has taught all of us in our little family and beyond about the dangers of expectations! I don’t worry about the future anymore, I don’t worry about her, and because of her independence, I know that she can achieve everything SHE dreams of.

Team Rainbow

The big girls' school has been spending the whole month of October investing in "awareness".  Each class has learned about something near and dear to their hearts and in their chapel last week and this week they wore the awareness color and gave a presentation telling the school about it.  Their theme this month was "we are all part of God's team".  I love this so much...its like they were doing Down syndrome awareness without even mentioning it, because a big part of Down syndrome awareness is accepting differences as a normal part of life.  We humans with all our strengths and disabilities are a great big team.  I wrapped the month of awareness up today by talking to the kids about Down syndrome.  Reagan has been a favorite at that school from the beginning (120 kids cheered when I announced she'd be attending next year) so the kids loved talking about what they've learned about her.  I decided to share how some of Reagan's strengths and weaknesses tie in with the things all the other classes shared about.  Hearing Loss,  Diabetes,  ADHD/learning disabilities, Childhood and Brain cancer and Alzheimer's.  A lot of those affect people with Down syndrome.  But Down syndrome is also helping push learning about treating some of them too.  The kids thought that was pretty cool.  And it helped with the realization (I have a long running theme here lol) that hard is not bad.  And even that something we see as bad always has a good side...we might not always see it, but that doesn't mean its not there.  Things can be both good and bad.  Our struggles and weaknesses shape us and we shape those around us.  So we shared not just about Down syndrome, but how it fits into the bigger picture.  A rainbow of colors for a rainbow of awareness....and remember that rainbow is a promise...the kids recited their chapel verse for me, proudly stating that they are "fearfully and wonderfully made...and they know it well".  I think they do know it well!  But just in case I sent them home with skittles to remind them of the rainbow ;)

Fair

Reagan has learned a new phrase this week.  I'm not sure where she picked it up and I had to laugh the first time she said it because I'm not even sure she knew what it meant.  She has however repeated it several times since and does indeed seem to know what she is saying.  Imagine an adorable three foot tall person crossing her little arms and stomping her cute booted foot and saying "Mama, dat not fair!"  Lucky for you when you bust out with a smile at the sheer funny cuteness of it you don't have to hide it from said small person.  She said it to me again today when I made her stop drawing and come with me when she did not want to...so yeah I figure she knows what she's saying.  And so begins the lesson we all must learn (though I'm fairly certain that way too many people never do),  life is not fair.  I ask my big girls all the time when they bust out with the "that's not fair" complaints (generally about something the other has that they want) do you really want it to be fair and equal?  And of course they realize with a moments thought that they do not.  Humans have that nasty habit...of complaining that "its not fair", without thinking through the consequences of fair and equal.  Fair and equal does not mean we all get the same good stuff.  It just means we are all the same.  Nothing different or interesting can ever happen to us.  We have to take the equal bad along with the equal good.  We can't build meaningful lives or relationships because there is nothing to work with or even against.  It ties into the sometimes difficult to accept idea that hard is not bad.  Hard is not bad and fair is not good.  Life is entirely too complex to break down into fair and not fair or to classify things simply into the file of bad or good.  We will be a lot better off if we stop comparing, stop complaining and stop basing quality of ease and comfort.

This is a lesson that Reagan has taught me over the last five years.  Is her extra chromosome fair?  No!  It isn't fair that she had to have open heart surgery at six months old and has been playing medical catch up ever since.  It isn't fair that she has to work harder to learn things.  It also isn't fair that she gets a larger dose of compassion for others.  Its not fair that she doesn't have to work as hard to see the good in people.  So how should we balance out the unfairness of it?  Take away her extra chromosome?  Or give it to everybody else?  See,  its too complex.  October is one of my favorite months. It  always has been because I love fall, but even more so now because I can combine that with Down syndrome awareness.  October is a hard month for me because Reagan's first October was very challenging with too many appointments and too much to learn and too much fatigue.  And every year that comes back and I usually don't realize that its weighing me down...that old tension...so I tend to feel stressed and overextended and don't even know why.  That's not fair.  But its also not fair to everybody else that I have a greater understanding of how to handle basic medical problems.  It's not fair that I get all this attention from the writing and pictures I post....ok it's Reagan that really gets the attention, but I'm getting to sleepy to think through good examples.  I hope you understand what I mean though.  No life is not fair.  Hard is not bad.  Every experience, every day,  every problem or relationship or interaction....hard or easy, positive or negative...shapes us, and do we really want to mess with that?  Because it's not fair?  I know I don't!