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!

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.
my

 
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!

If you can't say something nice...

Ok here we are one week left in October and all I've done is share how cute Reagan is and how much you all should be jealous that she is my kid not yours.  And of course that is true and I'm seriously the luckiest mom on earth to have given birth to the pure joy that is Reagan, but I haven't yet touched on anything controversial and it wouldn't be October if I didn't offend someone with my politically un-correct views, so here is a little bit for you.  I was at a wedding tonight...with my blue and yellow hair...and it struck me just how insane it is to be bent out of shape about peoples' word choice.  If I am standing there telling someone why my hair is blue and yellow because of Down syndrome awareness...am I really going to correct them if they don't use people first language? (If you don't know what I'm talking about, bless you, I will not tell you, you don't need to know!)  Seriously!  I am just happy that people want to talk to me about Down syndrome, and often, their positive experiences with (sorry haters) Down syndrome people.  I WILL NOT ever correct someone on their word choice when they are expressing to me something positive about my daughter and her peers.  And I will not teach my daughter to be offended if people choose the "wrong" word order.  I will teach all my children and anybody else who will listen...If you are saying something nice I don't care what words you use,  if you are being unkind I will rip you apart for being a cruel human being...oh yeah and these two old adages..."if you can't say something nice don't say anything at all" and "sticks and stones may break my bones, but words can never hurt me".  I grew up on those and I wish more people still did...the world would be a better place!

Slumber Party

When the biggest sister has her very first slumber party with friends from school what are the two littler sisters to do?...Have a slumber party of their own.  We already know what an awesome big sister Cadence is (thank you for all the sweet comments, she positively glowed!) so it is no big surprise that these two cuties made the most of their duo sister time.  First up chinese food that Clarisse doesn't like along with a new movie.

 Followed by cookies...fresh out of the oven.

Then Cadence reads a bedtime story

 

and they say their prayers.

Sleeping in Clarisse's bed is a novelty....sleeping in any bed is a novelty!!!

 I'll take it ;)

Anna and Me

We had and interesting day today.  Reagan, Anna and I.  Cause that's how she's rolling these days,  she has hit the stage where she is sharing her life experiences with Anna.  Everything from holding hands properly while crossing the street to going to the doctor.  Today it was going to the doctor.  It is good that she had her "friend" with her to share the experience because she has evidently also hit the point of being aware/remembering trauma and pain.  When we pulled up to the doctor's office she told me "no Mama, scared, hurt arm".  I guess the two pokes for her blood draw last week stuck with her.  I promised her they wouldn't hurt her today or poke her (and they made a liar out of me!)  so she was ok.  First step was teaching Anna how to dance in the elevator, cause you know that's what you do in order to not be scared of elevators when you are three feet tall.  Excuse me three feet and 1/2 inch tall!  Take that anything that requires 36 inches in height!   Temp, pulse, blood pressure are no big deal for her and she did well on her vision and hearing tests in a general sense (never worry too much since she gets further testing from the specialists).

 While we were waiting for the doctor she made Anna take the hearing test and push the button too...so I took a picture.

 So then she had to take pictures of Anna taking the hearing test. She's actually gotten pretty good at taking pictures lol.

 This is a very cute way to pass the time waiting for the doctor!
 Her labs generally look pretty good.  Her vitamin D levels are finally up to normal!!!  Her doctor was floored when I told her how much I was supplementing her, but Down syndrome can cause some pretty good Vit D deficiency.  I am happy she's in the right range as we go into "flu season" this year, especially as she is already working on another sinus infection...ENT has been called by her pediatrician and hopefully we can figure out how to stop this recurring cycle.  Iron levels and thyroid are perfect.  Her blood sugar was a bit low leading to the mommy lie as they gave her a prick test to make sure it was currently normal which it is, however we shall keep and eye on that as I have suspected for a while that she has hypoglycemic episodes...not sure what that means yet.  The most frustrating thing was that the lab failed to run two of the tests that were ordered...so she's going to have to get another draw done this week.  And considering her response to today I feel pretty rotten about it...we'll bring Anna and poke her too!  Overall a good report as expected but we have an agenda of getting her specialists to get her some help in a few areas.  So we are working on a line up of : ophthalmology,  ENT,  cardiology,  orthopedic, audiology and sleep study in the next few weeks!  I'm tired just thinking about it, but all but ENT and ortho should be routine.  Those two better get her some help or they'll have a mad mama on their hands ;)  You know for such a healthy kid she sure has a thick chart and a long list of doctors!  Kinda makes me feel silly sometimes...

That's it for now, bye

Today's post is brought to you by Cadence.  She has been saying for a few days that she wanted to write on Reagan's blog so I told her to go ahead and write it on paper and I would put it on the computer.  This is what she wrote.  Three speech bubbles with three little things important to her.

"Down syndrome is not a bad thing.  It might make people better than without Down syndrome but it might be hard to do a lot of things or hard to learn with Down syndrome like Reagan so that's it for now, bye."


"Well here is some ways I like people with Down syndrome like Reagan.  One way is because they can be cute and funny and cheerful and also loving so that's it for now, bye."


"Well I went on a field trip.  I went to a nursing care facility.  We played some games and passed out cards, we had lots of fun bringing joy to the people there so that's it for now, bye."


(I fixed the spelling and some punctuation, but if you can see some of her original spelling it is priceless)











She went on a field trip with her class today that she has been looking forward to for several weeks.  The kids prepared a couple of songs and took puzzles and games and visited a skilled nursing care facility and shared love and homemade cards.

 I overheard a conversation between Cadence and her friends who were saying that they were nervous to talk to the people because they didn't know what to say...Cadence's response "just be yourself".  She really lives that, and it brings joy to so many.

 She is not yet seven years old, but she has an incredibly wise and empathetic soul.  Reagan really couldn't ask for a better big sister.

Fatigue and Fun and fffffff

I am sorry I did not get a post up yesterday.  I have been pushing too hard for too long and went to bed with a migraine.

Better today after some rest and caffeine so I'm back to catch up on what Little Miss has been up to.

 Yesterday we started off with Sunday school...coloring and writing her name was evidently much more fun than being with Mama as she decidedly told me she was staying with Miss Jessica for the second hour.

 I love how well she is starting to express her desires.  After lunch (little piglet yesterday!) we went to a first birthday party for a couple of adorable twin girls.  Little Laurin is special to Reagan because she also had open heart surgery halfway through her first year.  Reagan and I were at the hospital for her surgery and believe me Reagan understood somehow in her sweet little soul what was going on and she has been very attached to Laurin ever since.

 At the party she jumped in the bounce house which is a pretty big deal since up till 3 months ago she was too scared because of her lack of balance.  Then of course what is a birthday party without CAKE.  I would be remiss if I failed to mention that Cadence designed this cake.

 Reagan did her part by declaring it "nice" and "pink" and eating a big piece.  Today when I picked her up from school I had a nice chat with her speech therapist on how she is doing, which of course is "really well"...but she told me that Reagan needs to start working on not dropping fff's and sss's which is true.  The interesting thing is that she told me those sounds are the hardest for those with hearing impairment from....drumroll please...fluid in their ears.  Which explains why some of her articulation comes and goes.  So we will be determined in our attempt with oils to keep it drained...and schedule a visit to ENT and audiology to see where she is with that fluid.

Pop Quiz

I have been realizing over the last couple of days that I am missing the mark on some of this Down Syndrome Awareness thing.  It has been slowly occurring to me as I explain that my hair is blue and yellow for Down syndrome awareness month....that so many people don't even know what Down syndrome is.  I have been writing and sharing pictures and stories of life with Reagan and that does a fantastic job of showing that Down syndrome is nothing to fear in the whole scheme of life, and that while our story may be different, really so each every family's story.  Reagan has certainly shown quite a few people in this world that Down syndrome isn't what they thought it was....but I'm suddenly realizing that I have assumed they all know what it is.  So here is the pop quiz for tonight.  Do you know what Down syndrome actually is?  Do you know how many people have it?  Do you know how it is diagnosed?  Do you know what effect it has on those who have it?  I want to know what you know.  What you don't know.  What you would like to know.  Because I suddenly realize that while being aware that Reagan is amazing and Down syndrome isn't scary is a good thing....how can you be an advocate for her and her friends if you don't really know the facts....so please...tell me what to teach you.

Don't leave me hanging...I expect answers ;)  And if you are related to anyone with an extra chromosome your answers don't count lol.

Cookies and...Reagan

One of Reagan's favorite things is "cookies,  choc-o-late chip cookies".  And if she gets to make them herself then they taste even better.  So we did :)  Reagan would be happy to share with you.  Now Reagan has been watching Mommy bake for a long time now so she has a pretty good idea of how its done and what ingredients to use.

 First you add the "flour, and salt mama"  and "baking soda?"

 "Stir Mama, stir it"

 Mix the "sugar Mama"  with the butter and the eggs

 Add the secret ingredient which isn't so secret since she's telling you "Orange oy-ole, smells good"
Put them in the fridge for a bit then we count them out onto the tray to bake them

Then comes the most important part...

I'm not sure which is yummier, the cookie or the cutie ;)

Loss

As I have mentioned previous years, October 15th is Pregnancy and Infant Loss Remembrance Day.  All day as I scrolled through facebook I saw posts about losses and the pain that never completely goes away.  Nor really would we want it to, because the pain is part of the beauty of the little one that was so loved whether born or still just cherished in mother's tummy.  Some of you my treasured friends, I have known about your losses.  Some of you I know have lost more than once.  Some of you I didn't know had lost a beautiful little one until today.  All of you I know would give anything to have had the chance to hold your child.  Or to have one more day with him.  My heart grieves with yours tonight as I think of your precious little ones safe in heaven now.  But thinking of all of your little ones who were so wanted and treasured twists my heart even more for the little ones who were never given the chance.  I think of my Reagan and how she might not have been given a chance at life if someone else were her mother.  Because its the truth...too many babies diagnosed before birth with Down syndrome don't ever get the chance to live.  And why?  Fear, mostly.  The parents just don't know that its going to be ok.  They don't know its worth it.  They don't know what they are throwing away.  So precious mamas who are remembering your babies in heaven....pray with me tonight for the mamas who are scared.  That they will realize the gift they have...the gift you would treasure if it were yours.  There are already too many broken hearts tonight.  xoxo

Brave

Reagan has a high pain tolerance.  It is a blessing and a curse.  It is helpful when she has to get her annual blood draw done and veins in these little arms are never easy to find.  We had better success this time, only two pokes and one tiny "ouch" from Miss Reagan.

The techs always fall in love with the tiny girl who holds so perfectly still while they poke and draw  8 vials of blood!  Small bumps and bruises don't bother her.  But on the other hand that high tolerance makes it difficult to know if something is wrong and what it might be....so we end up with things like 9 month long chronic sinus infections with no fussing on her part.  Which get treated with three week courses of antibiotics.  Which she is allergic to.  The hives do bother her.  When you combine that with a physiology that doesn't drain well and turns into to stuffed up everything you tend to look for ways to avoid that.  So we work on preventing colds and allergies and blocked up ears by supporting and maintaining healthy functions.  One of the tools we use Reagan really loves.

  "Oy-ohs Mommy!"  She dearly loves having essential oils applied which is a good thing since I got oil happy today at the first hint of a runny nose!  She wanted to smell every bottle and point out her favorites :)

 That and story time at the library with her friend more than made up for a couple little pokes...

now which oil should I apply to restore my sanity from the insurance fiasco over the bloodwork....

Goodbye Summer

I love fall.  And it is October, so I keep pretending it really is fall even though we are in the throes of the typical SoCal Indian Summer.

 Now we are scheduled for some rain, so maybe we're almost there, and to help it along I thought perhaps I could post a summer farewell from Reagan here.

Ok, apparently I only have swimming pic of Cadie, but its a good one :)

  After all if she can't swim in the pool anymore (despite the hot days, the night are too cold to keep the water temp up) then we need to get on with the scheduled wet weather so she can use her umbrella.

 I'm with her, its time for HOT coffee, sweaters and rainboots.  So here's to a great summer....we loved you, we'll see you in a couple of months...now goodbye!

I did it...

There is something I heard very frequently in my house...fortunately I don't get tired of it!  Life with Reagan consists of regular exclamations of "I did it Mama, I did it".  And of course when those accomplishments no matter how small they may seem to big people are achieved...especially unprompted or unassisted,  it is a source of great pride for Reagan.  And she is becoming very independent so we hear it over many things a day.  And they are a big deal.. Getting dressed all by myself Mommy.  Putting shoes on...the wrong feet...and fixing it.  Going potty!

 "Helping" fold laundry.  Sometimes she is even truly helpful...unloading the dishwasher all by herself. 

Feeding the dogs.

And sometimes she shows off how much she's learning at school...doing her homework properly.

 So yeah, I don't get tired of hearing "I did it".  Lets be honest...many times I tell someone else..."she did it"...you know, like right now ;)

Therapy Applied

Reagan struggles with low muscle tone.  This is not the same a not being strong.  The simplest explanation is that her brain doesn't properly tell her muscles when to engage, so no matter how strong they are they don't always help her do what she needs.  Gross motor skills have always been an area of weakness and she has had physical therapy all her life.  She has never walked long distances...until now.

The difference that physical therapy can make (especially when coupled with targeted nutritional therapy) is asstonishing.  Today we applied her five years of therapy to the real world.  We went for a 2 mile hike!

And she walked pretty much the entire trail.  Uphill and down.

 Over rocks.

Along logs.  These are all skills that she has worked hard on in therapy.  Until recently she didn't have the endurance for this long of a walk,   We applied her sensory therapy too.

The mushroom was "cold and squishy".

The moss was "soft".

The lichen was "scratchy".  By the time we reached the end of the trail I think she may have collected her weight in rocks and acorns in her pockets.

"look Mama, nother rock, put it in pocket?'  See,  speech therapy, applied.  Driving the car over the bumpy rutted road..."careful Mama".  And when her poor little flat feet just could go any farther..."Mama I can't,  foot hurt".

 She wasn't so worn out though that she couldn't join in the creative imaginary play while we waited for Papa to go back down the trail to retrieve the keys that Mama might possibly have airheadedly left in his car.

 We played  Hot Stick, which is a lot like hot potato except, you know, with a stick.

 We played pine cone soccer.

 We roasted pine cones over a pine cone fire and played telephone.  We built pine cone and leaf castles.  It was a good day.