Thursday, October 27, 2016

31 Days of Down syndrome Awareness - Day 27

Our dinner conversations started with a prayer.  Father, Son, Holy NAKED!  It deteriorated from there.

Part of the fun and the crazy of Riley is getting to hear all of his insane comments first hand.  We try like crazy to keep a straight face and not encourage the insanity but some days I'm too tired to care or he is just too funny.

Another great moment when he dressed himself, headband included, and told me he was ready to exercise.  Gotta have a head band like brother :-)

Almost looks like his twin!  

Monday, October 24, 2016

31 Days of Down syndrome Awareness Day 24

Today we had an IEP meeting for Riley.  Thankfully these meetings don't create quite the stress they used too.  We were able to finalize the support he needs for the rest of his day.  I'll leave out all the nonsense that the District staff creates that doesn't improve the process and jump to the good part of the story.  Riley has support through out his entire day again.   There have been a lot of extra challenges this year with a change in his aid.  If it had been as simple  as changing support staff this fall would have been a piece of cake but nothing is ever a piece of cake it seems.    I am very hopeful that things will start to fall back into routine for him now that he'll have the support he needs.

His team at the actual school building is amazing.  They take amazing care of my boy and push him to be the best he can be.   Can't ask for any thing more than the support they provide Riley and the rest of his crazy family.  I wish his team didn't have to deal with all of the District craziness to deliver what they know is best.  It makes their job so much more challenging than it has to be.

Sunday, October 23, 2016

31 Days of Down syndrome Awareness - Day 23

Roxy thought this was a great place to hide this afternoon.  It was a busy day and I wish I could curl up and hide too.  I thought we finally had a sitter all lined up for Riley that he would love and she let me know this morning that she found a full time job.  Great for her but I am seriously frustrated with this search for childcare.  I never imagined it would be this difficult to find someone.

We spent  time at Gonzaga Prep's open house learning about what school could look like for Rex next year.  I've heard from lots of people that he he really needs to go to Prep.  We leaning that way but anyone out there in cyber land have just a typical student and that went to Prep and thrived.  I hear tons about the 4.0 taking a ton of honors but what about a regular student.  Don't get me wrong he isn't a bad student just not an enthusiastic one.    Obviously he's super excited about their football and baseball programs and the idea of being  part of those, but his mom is a bit more interested in his academics.    If that money tree I planted would start growing this wouldn't be such a challenging decision.

I think the fact that Riley was pretty much a stinker all day just makes it harder.  Its hard to focus on the details when you patience level is wearing thin.   Some days I just wish it was easier to take him places or at least the chance that you could take him places and not listen to him complain the entire time.  I feel like putting a sign on him that says "talk to him at your own risk"  He might bite, yell or insult you.  If your feels get hurt easily back away from the angry elf.

Saturday, October 22, 2016

31 Days Days of Down Syndrome Awareness - Day 22

Chef Riley is in the kitchen again.  He loves a good reason to make a cake.  Good thing Molly is coming to town so we have a great reason to get together and have a cake!

Friday, October 21, 2016

31 Days of Down syndrome Awareness - Day 21

One topic that is hard to avoid when you are talking about Down syndrome awareness is the fact that some where between 73 and 95% of pregnancies with a prenatal diagnosis of Down syndrome are terminated.  The statistics vary a little but the point is that pregnancies that would otherwise be wanted are being terminated simply because of a Down syndrome diagnosis.  Here is a link to a recent article on the topic.

MARK LEACH OCTOBER 13, 2016 GONE: estimate reduced by 20% of people with Down syndrome in United States

I should frame this by saying that I do not believe in abortions.  That is my personal belief.  Your beliefs may be different and that is OK.     It is OK if we disagree but  I want you to really think about the statistic that you just read in that article.   Here it is again for you reading ease :-)

  A 2012 study estimated that about 74% of pregnancies with a prenatal result for Down syndrome are selectively terminated, i.e. a 74% termination rate. But, that does not equate to a 74% reduction in total births of babies with Down syndrome. This is because many parents do not opt to have prenatal testing and (as reported in this post) more women than ever are choosing not to abort following a prenatal result. Plus, not all pregnancies carrying a child with Down syndrome will result in a live birth due to natural miscarriage (as reported here). Therefore, while there is a 74% termination rate, only 30% of all live births are reduced due to selective abortion.

We knew prenatally that Riley had Down syndrome.  I don't share that to claim to be better or have a stronger moral compass than anyone else.  I say that because I can also say it was one of the scariest times of my life.   I felt scared and alone and not capable of parenting a child with special needs. 

 There are more prenatal tests available now than ever before and they are easier and less intrusive than ever.  I don't think prenatal testing is bad.  I will always be grateful for the time I had to prepare for Riley's arrival.  I stressed and planed and cried and stressed and cried some more during that time.  Honestly I still had to look and make sure they got it right in the delivery room.   As stressful as it was I was able to read and research and grieve before I had to balance that with caring for a baby, pumping milk to take the NICU and trying to be a mom to Rex all while being completely hormonally imbalanced after giving birth.  

People that would otherwise be attempting to carry their pregnancy to term are deciding that it is a life not worth living because of a diagnosis of Down syndrome.  They are deciding a child just like Riley isn't able to life a meaningful life full of love, joy sorry, anger and 
sassiness.   Every life is valuable.  I won't lie to you and say everything for Riley is roses.  Sometimes life is hard.   I'll let you in on a little secret though Life is hard at times.  Life isn't always fair but it is always worth living.   

I guarantee you that our family looks at life a little differently now that we have Riley.  We celebrate more of the little things.   We try to remember that we are all different and that being different is ok.  We laugh a lot!  I hope that by sharing our family others can see the value in the life that Riley is living.  

Thursday, October 20, 2016

31 Days of Down syndrome Awareness - Day 20

 Riley's 4th grade gen ed teacher uses a project based approach to homework which typically makes it something Riley can accomplish.  This week we read a fun story about a little boy going on a grand adventure.  We were given options to make a map of our own adventure, a story poster or to write a recipe for an adventure.  Riley gave me all the ingredients for a great camping adventures.  He says I just want to talk about it.  Which is his way of telling me that he'd tell me what to write.  He did make the list completely by himself.  He knows how to have a camping adventure!

Then we made a video of Riley reading his recipe for a adventure.  So technically we are supposed read the story the first night and then pick a project each of the remaining nights I take a little liberty for our sanity and we typically just complete one.  It works and typically Riley is cooperative.

Wednesday, October 19, 2016

31 Days of Down syndrome Awareness - Day19

Tonight's post is brought you by the letter D.  DINOSAUR!!!  This was a perfect costume for my little dinosaur lover.   He used the pick up line "You like dinosaurs?' All summer to make new friends.  More than one of the parents on Rex's baseball team fell hook line and sinker for that line and ended up having very lengthy conversations about Riley's favorites.  Riley will be wearing this treasure for years to come.

I think that extra chromosome comes with a little extra love of the dramatic.  Its seems to me that most of the kiddos I know with Ds really enjoy dressing up and imaginative play.  One of life's many mysteries.

T Rex arms

Tuesday, October 18, 2016

31 Days of Down syndrome Awareness - Day 18

Tonight we celebrated my new job with my old office crew.   It was a great evening with really awesome people that I will always call friends.  I would highly suggest the book Bad Little Children's Books to my most inappropriate of friends.   Laughed until it hurt and then laughed some more.  I am going to miss this fabulous group of people!  

I am super excited about my new position  I have taken skills from all of my previous work and combined them with a whole lot of life experience and am now working as a Case Resource Manager for the Developmental Disability Administration.  I have lots to learn but I feel like this is going to be a really great fit for me.  Plus the insurance benefits are awesome and that makes  me super happy.  

One of the best things I have learned from working in a psychologist office is the official term for drinking with friends and laughing until it hurts.  Self care!  This is a great description for any time you need to recharge you parental batteries and hang out with grown ups.  All parents need to do this but especially parents of children with special needs.  All joking aside self care is critical.  You can quickly lose perspective if you never step outside your small little world and see that others travel similar paths.  Find joy in laughing at yourself and the crazy antics of our kids.  They are amazing little humans but it is exhausting work being a parent.  So take a break once in while and share a meal with friends and laugh.  It is good for your soul and you parenting skills.  

Monday, October 17, 2016

31 Days of Down syndrome Awareness - Day 17

Not sure how this happened over night.  

As a parent I feel like this one needs way more of my attention right now.  Its funny how it kinda bounces back and forth between the boys and who needs what.     Getting so big and hairy  but really just still a little kid.  So many responsibilities to organize and not quite prepared for it all.  He amazes me on a regular basis with his maturity  and equally amazes me with his disorganization.  This parenting stuff is complicated.

Sunday, October 16, 2016

31 Days of Down syndrome Awareness - Day16

Riley tolerated brothers game today.   Riley was not impressed with the rain and was ready to go home pretty much as soon as he got there.  Thankfully the rain didn't last long or Riley and Grampa were headed to spend some quality time in the car together.  I guess that wouldn't have provided some entertaining stories.  Riley always has his own version of things and mom is tired and so I'm taking the easy way out with a video tonight.  I captured him right before shower time but I assure you he has the bottom half covered...well at least his bottom.

Saturday, October 15, 2016

31 Days of Down syndrome Awareness - Day15

Riley loves to tell stories.  He was full of it on the drive home tonight so I thought I'd try to capture a little of it.  These videos capture a small glimpse of what it can be like to try to have a conversation with Riley.  There is often a continuous loop of topics.  Time is fluid and you may jump from today to yesterday to a week ago all the way back to preschool all in the scope of one small interaction.  It is pretty easy for our family to follow but outside of those of us that see him day to day the time jumps can be really challenging to follow.

Before you view this let me clarify that no one has died,  Rick has been his imaginary friend for several years and I have no idea where he came from, and Rex has no injuries.

Friday, October 14, 2016

31 Days of Down syndrome Awareness - Day 14

~Live to Dance, Dance to Inspire~

 Anyone that has spent any time with Riley knows that this kid lives to shake his groove thang.  He has always been a music and dance kid.  I had previously tried a dance class that was happy to include him but the class was geared for typical kids.  There were a lot of dancers and it moved fast.  It just wasn't a good fit.  When we found Inspirations Dance Studio and specifically Mikaela we knew immediately it would be a good fit. 

We stumbled into dance class at a time when Riley was really struggling at school. Both socially and academically he was a hot mess.  There were weeks that dance was the the only happy place he had.  It was an hour a week where he was 100% welcomed and completely accepted for who he is.  Mikaela has amazing composure and is not for a minute fooled by Riley's "cute" routine.  She has very high expectations for him and knows he is capable of so much. It is a special balance when you can meet a person where they are, challenge them to be more, and all the time make them feel special and accepted.  

This is Riley's 3rd year taking dance.  He still loves it.  This past week has been a rough one with a lot of transitions for Riley.  After class when I checked in with Mikaela on how he was since it has been such a bumpy week she says "well it started rough but I just looked at him and told him I needed him to be awesome.  I don't want to be grumpy so Riley be the awesome kid you are."  He turned it around and decided he could join in and did much better.  There is something a little magical about dance that tends to bring out Riley's best side.  
Riley loves to be like his big brother.  Rex plays baseball, football,basketball...  those are things that I am familiar with.  Dance brings an entirely new experience to our family.  I think it is so awesome that Riley has found something he loves and he can do on his own in a meaningful beautiful  way.  Seeing Riley's dance shoes next to Rex's football cleats sums up the beauty in the differences in my boys. 

Inspirations Dance has a full menu of dance classes for typical and special needs students.  You can find the studio at Inspirations Dance Studio   and read all about the classes, schedule and the instructors.  I have added the mission statement below for your reading ease.   

Inspirations Dance Studio is a non-profit organization dedicated to teaching all ages and skill levels the world of dance. We pride ourselves in making sure everyone has a chance to express themselves. We have made sure to implement a variety of diverse programs including: financial options for low-income families and dance classes for people with special needs. We are here to serve our community with highly trained staff and encouraging attitudes. There are classes offered in floor gymnastics, ballet, jazz, tap, and hip hop for all ages and abilities. Everyone will have a chance to shine their brightest. 
~Live to Dance, Dance to Inspire~

Thursday, October 13, 2016

31 Days of Down syndrome Awareness - Day 13

Some days you just have to honor the journey.  We travel a lot of ups and downs but this kid is nothing short of amazing.  I love to look back over the highlights.  Here are a few of my favorites.  

Wednesday, October 12, 2016

31 Days of Down syndrome Awareness - Day 12

The National Down syndrome Society reports:  There is a 50-100% incidence of obstructive sleep apnea in individuals with Down Syndrome, with almost 60% of children with Down syndrome having abnormal sleep studies by age 3.5 - 4 years. The overall incidence of obstructive sleep apnea increases as children grow older.

Riley was diagnosed with sleep apnea just over a year ago.  We started using the CPAP at home in late August right before he started 3rd grade.  A year later and we are still tired.  We are still struggling with Riley's sleep.  We have certainly made progress and over all he tolerates the CPAP amazingly well.   I truly believe that if we could get him to sleep well on a regular basis that we would see a huge impact on his behavior and his attention at school.

 We cycle up and down with how long he will wear the mask and how many apnea it is reporting he is still having each night.  We have not found the magic combination of pressure and mask for him.  Last Friday we picked up a new mask for him to try.  This one covers his mouth and nose instead of the old one that only covered his nose.   His mouth was opening a lot while he slept and that breaks the seal so the air comes rushing out his mouth instead of keeping his airway open.  The real issue is the noise its makes and the fact that it wakes him up.  Having him wake up is BAD especially since if he's awake then I'm awake.   You'd be stubborn and grumpy too if you were making up multiple times every hour.  Riley and I have a solid excuse for our sassy attitudes.

If we are on a good cycle and he's getting good sleep for several days to a week then we see those improvements in behavior.  It only takes one night of horrible sleep and we are right back at the beginning.  The Dr. did confirm that its not just in my head that it only takes one night to put us back at the beginning having to build on that good sleep again.

We will eventually find the magic combination of mask and pressure setting.  I live by the motto that we need to pick our battles with Riley.  I have picked this battle.  I just know that when we finally get it figured out we will all benefit from Riley's improved sleep.  It only took him about 4 1/2 years to be good with his hearing aids so I only have about 3 more years to go.

For those of you wanting a bit more info about sleep apnea and Down syndrome I pasted additional information from NDSS below.

Why Do Individuals With Down Syndrome Have a Higher Incidence of Obstructive Sleep Apnea?

Anatomy accounts for many of the reasons why there is a higher incidence of obstructive sleep apnea (OSA) in individuals with Down syndrome. Some of those factors include: central apnea, low muscle tone in the mouth and upper airway, poor coordination of airway movements, narrowed air passages in the midface and throat, a relatively large tongue, and hypertrophy (enlargement) of adenoid and tonsillar tissues.  Increased upper airway infections and nasal secretions and a higher incidence of obesity further contribute to collapse and obstruction of both the oropharynx and the hypopharynx when the individual is sleeping. 

What Are the Effects of Obstructive Sleep Apnea?

Sleep disordered breathing has been shown to affect cognitive abilities, behavior, growth rate and more the more serious consequences of pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs) and cor pulmonale (failure of the right side of the heart). Because of the high incidence of underlying congenital heart problems in individuals with Down syndrome, there is a higher risk of development of the more severe complications. Abnormalities in pulmonary vasculature (the circulatory system in the lungs) also increases risk of development of pulmonary hypertension (abnormally high blood pressure in the arteries of the lungs). 
Unfortunately, the ability of parents to predict sleep abnormalities in their children with Down syndrome has been shown to be poor. A sleep study or polysomnogram continues to be the gold standard test from which to evaluate sleep disordered breathing and sleep apnea. Because of the poor correlation between parental reporting and sleep study results, the new American Academy of Pediatrics health care guidelines published in Pediatrics in 2011 recommend a baseline sleep study or polysomnogram for all children with Down syndrome by age four. Sleep apnea is often undetected in both children and adults, so caregivers should moniter sleep patterns in individuals of all ages, especially if there has been a change in mood, behavior or ability to concentrate.  

What Are Symptoms of Sleep Abnormalities?

Symptoms that are suggestive of sleep abnormalities include: restless sleep, snoring, gasping noises, heavy breathing, apneic pauses, frequent waking during the night, trouble getting out of bed, daytime sleepiness and excessive napping. Sleep apnea can also cause behavioral changes, including symptoms of irritability, poor concentration and impaired attention. Uncommon sleep positions such as sleeping sitting up, sleeping with the neck hyper-extended or sleeping bent forward at the waist in a sitting position are all suggestive of a sleep disorder or obstructive sleep apnea.

What Causes Obstructive Sleep Apnea?

Enlargement of the tonsils and adenoids is one of the most common causes of obstructive sleep apnea in children. However, other causes of obstruction such as chronic rhinorrhea and congestion, nasal septal deviation, and nasal turbinate enlargement need to be assessed and treated. If the oral exam shows edema of the posterior pharyngeal wall, thus decreasing the size of the posterior pharyngeal airway, gastro-esophageal reflux (GERD) or chronic post-nasal drainage should be considered. Treatment with anti-reflux medications and/or decongestants, nasal steroid sprays and antihistamines can sometimes be helpful.

Tuesday, October 11, 2016

31 Days of Down syndrome Awareness - Day 11

This is one of my favorite posts to do each year.  It's  fun to hear Rex's take on life with a brother with Down syndrome.  The bond between these two is incredible.  Don't get me wrong they still argue like siblings do but they have a very special relationship.  I am very very thankful for the awesome big brother Rex is.  

What is Down syndrome?    It is a learning disability.  It makes you learn just a wee bit slower.  
What do you think about having a brother with Down syndrome?  Umm it's not bad.  It's a little bit challenging. 

How is it challenging?  He has to argue about EVERYTHING.

What is the best thing about having Riley for a brother?   All of the funny stories.  Like walking out butt naked from a public restroom or randomly throwing out cuss words.  

What is the worst part about having a brother with Down syndrome?  The fact that I can't share my sports with him.  I can't just go out and play catch with him.  

What would you do if someone made fun of Riley for having Down syndrome?  I'd probably explain what Down syndrome is.  Would you punch them in the nose?  Well ya if they kept making fun of him after I explained it.  I totally would.  

How would it make you feel?   Mad and sad.  Just because someone has a disability it isn't OK to make fun of the.  

What would you tell a friend that was worried about having a brother with Down syndrome?   I'd tell them that its OK because you will have a lot of funny stories.  

What do you think about Riley going to a different school?  It's fine.  

Do your friends ask questions about Riley and Down syndrome or tell you he bugs them?  If anything they talk about Riley in a good way.  Especially funny stories like the time he was in the dryer.  They talked about that a lot.  

Do you get tired of hearing how cute or funny he is?  A little ya.  Its kinda annoying.  But that would be the same with anybody though.  
What do you think about hanging out with friends like Hunter  that have a sister with Down syndrome?  Its good because you can share your stories and experience and they actually know what is going on.  He can relate.  

Do you and Hunter talk about Riley and Ella?    More just comparing the funny stories and what weird experiences we've had.  

Monday, October 10, 2016

31 Days of Down syndrome Awareness - Day 10

Chaos is the adjective that best describes our life right now.  Crazy busy time at work for Justin + new job for me + begging favors to put childcare together for Riley  = Chaos!  It seems pretty fitting that Riley picked Hungry Hippos for an after dinner game tonight.  

10 minutes of game time followed by cuddles will do more to help him have a better day at school tomorrow than any amount of lecturing, timeouts or punishments for his behaviors.  The poor kid had his entire routine picked up and shaken around and then Gramma dropped him off for school this morning.  He will settle in with our new normal but he doesn't like to make it too easy on any of us.

Sunday, October 9, 2016

31 Days of Down syndrome Awareness - Day 9

While Rex is doing is thing....
I love this one that Stephanie caught of Rex and his  QB.  

Riley does his!

Riley and I pulled up to Rex's school a week or so ago and the cheerleaders were outside practicing.  Riley smiles and says "I love cheerleaders!"   He speaks the truth.  He loves everything about a cheerleader.  Cute girls and sparkly pom poms.  Whats not to love!

The girls were super nice and helped get Riley all set with pom poms so he was ready to cheer.  Its one of the moments when you just cross your fingers and hope he keeps the inappropriate booty shaking to a minimum.  He was right on target and yelled for the team and Rex with no twirking involved.  

Saturday, October 8, 2016

31 Days of Down syndrome awareness - Day 8

We had the honor of helping celebrate the adoption of Ella and Hunter's  new little brother.  I guess we could say Riley's future brother in law :-)  This is one lucky boy to have a family to love him forever and always.

Here is your reminder to go forward and be kind and love.  There are way to many kids in foster care.  We may not all be in a position to open our homes to these children but we can all find a way to support them.  Donate the the programs that provide support, clothing and services to these families and children.  Pray for the families giving up their children and those taking them in.  Its a beautiful and insane thing to witness from start to finish.

Friday, October 7, 2016

31 Days of Down syndrome Awareness - Day -7

What does a typical day at our house look like?  It often varies a bit by season.  Football season, baseball season and so on.  As often as possible we sit down to dinner together.  Its likely not a fancy meal but we do sit down together.  Tonight's gourmet offering was gluten free corn dogs.  Our dinner conversation can often be the funnies of part of the day.  

Most often it involves Riley realizing that he has to go to the bathroom and rushing off to take care of his business.  This routine doesn't change much no matter where sit down for dinner.  Last night for example we were out at my mom and dads.  We are mid meal and Riley announces that he needs the bathroom and off we go.  The rest of us are continuing to eat our meal and here come Riley stripped down to his undies.  As Rex pointed out he at least leaves his underwear now.  I guess we'll call it a success.  

There have been some good stories about Riley over the years and his dislike of clothes.  In kindergarten he came out of the bathroom in only his the white polo shirt to his school uniform.  For a time he would come out of the bathroom yelling "wanna see my naked" .   During dinner last night Rex minded us of the time their sitter took them to the children's museum and Riley came out of the public bathroom complete naked.  That was a great way to break in a new sitter.  

Riley prefers to be comfy in his boxers and nothing else.  If given the opportunity that is all he'd wear all day.  We have at least established the ground rules that he can't help cook with out pants on and we try to make sure he has pants on before he heads outside to play.  He sneaks out on us every once in a while.  Thankfully our neighbors have a great sense of humor.  

Thursday, October 6, 2016

31 Days of Down syndrome Awareness - Day 6

Facebook reminded me of this post I made a year ago today.  A year ago I had the honor of delivering a basket from our local Down syndrome group to a family that had a baby all squishy and fresh in the NICU.  They were raw with the discovery that there newborn has Down syndrome.  It was amazing and emotional to travel right back to the the start of our journey.  The yummy new baby is taking his parents on their own amazing journey.  I feel like I've read the next chapter in the book they just started.

October 6, 2015
Often I think that unless you have had complications or a child with special needs you really don't understand what a parent goes through when trouble arises at birth.  When people ask about it I openly say I was scared to death learning that Riley had Down syndrome but I don't really talk about why.  What in the world is so scary?  Especially when people see Riley today.  He's a pretty amazing kiddo (ya I'm bragging again) and if you know him now you really wouldn't find anything scary about it.  You'd probably just think I was the mom who needed to get over it already and celebrate my amazing kiddo.  

The truth can be ugly and  uncomfortable so prepare to get really uncomfortable for a few minutes because I had some ugly things running through my mind 9 years ago.  Before Riley was born I was afraid of the health conditions he might have.   We had a few concerns in addition to just Down syndrome and honestly our biggest concern before Riley was born was how his brain was going to develop. I'm not talking about if he'd be good student I mean I pictured a person not only with multiple physical disabilities but a person that couldn't control their own body, couldn't communicate and didn't appear to be able to understand or participate in the simple day to day life going on around them. A person who required 24 hour care and that wouldn't be able to join in our family activities even in the simplest form.  Now I know that that scenario  is very very unrealistic and honestly I've learned more about how to appreciate life differently.  The people that back then (Before Riley) I didn't think found enjoyment in life I now fully believe  find joy and love in life.  It is amazing how when we don't know about something we become scared of it.  My brain especially likes to run with the worst case scenario.    I should remind you all that I knew prenatally that Riley would have Down syndrome.  I had several months to conjure up the worse possible mental picture  before I had a sweet baby to snuggle.  I like to think that for every snuggle you get your brain cells line back up in a way that allows you see more clearly.  I spent those months before Riley arrived as a neurotic mess.  I had a picture of a child that that couldn't walk, talk or feed himself.  How in the world was I ever going to care for this baby?   I wasn't qualified to take care of this new life that would need so much.   I was angry at God and most everyone else for a while.  Seriously if one more person told me God only gives special babies to special people I might have landed in jail for assault.   I still  need to apologize to the person that said that to me and I asked them what I did that was so f'n special.  I didn't feel special I just felt overwhelmed and inadequate.  

When I was told that Riley had Down syndrome it was like a rug being yanked out from under me.  I was suddenly not allowed to live in that naive world where you think that growing and birthing a baby is the simply most natural thing on earth to do.  In theory it is super simple.  In practice it is nothing short of a miracle every time a baby is conceived, carried to term and arrives in this world healthy. I had rolled those dice once and had Rex.  I had the miracle.  A healthy pregnancy that led to a healthy baby and with that miracle I took all of it for granted.  I didn't know that the fact that Rex arrived in this world with the ability to suck and swallow while at the same time continue breathing was a miracle all its own.  Riley spent 2 weeks in the NCIU learning just that seemingly simple skill. 

I was also very specifically scared of Riley not being accepted and valued as a person.  If his own mother was scared how could I expect others to react to him.  What would his relationship with his brother be like.  If he can't talk how will he ever be independent.  Will everyone always assume he isn't smart because he doesn't speak clearly.  The list goes on and on.  And on and on some more.  

When you have no real experience or knowledge of people with disabilities and specifically Down syndrome your mind can run with the unknown.  What if my child can't____ .  You can fill in that blank with almost anything when you don't have a frame of reference.  That is why year after year I continue to write about Down syndrome and Riley and our life.  I don't want people to pity me or to feel sorry for our family that we have a child with Down syndrome.  I want people to understand that having your emotions run wild is completely typical and you need to allow your self to have all of those emotions.  You are not alone!  If by chance by knowing Riley or even reading about our family your panic is a minute less than mine that sharing the ugly truth is completely worth it.  
I'm not really sure when things got to be less scary.  There wasn't a magical moment when the clouds parted and the heavens sang.  I did find my faith and it helped.   I found strength in my family and friends that have loved me through all the ugly moments.  There have been some ugly ugly moments. I made new friends that are walking a similar path and have found strength in numbers.  I found my sense of humor and my new friends have a sense of humor too.
Most importantly I let Riley be the guide.  I stopped thinking about Down syndrome and focused on Riley.  I don't need to be an expert on Down syndrome I only need to be an expert on Riley.   
In case I was too wordy here is the picture version of this post.  

Don't be scared mom.  (he's even telling you in sign language)
How can you doubt these eyes mom. 

I told you mom.  I've got this.  It's cool.

Wednesday, October 5, 2016

31 Days of Down syndrome Awareness - Day 5

Riley has the most amazing big brother.  Today I am extra thankful for the awesome kid Rex is.  Life is extra crazy at our house right now.  I'm preparing to start a new job with full time hours and it has become a logistical nightmare.  Not every 14 year old would be excited about walking their little brother to school but Rex stepped up with out batting an eye and said sure he'd do it.   Its not that its a huge distance but timing is going to be everything on this journey.  Timing things too close can get tricky on a good day but you add Riley's unpredictability to it and it can be a big task for any adult. Hopefully this doesn't end with Rex running down the street with Riley over his shoulder or Riley sitting in the middle of the sidewalk refusing to walk.  

 Time and time again Rex steps up and helps in a big way and I am so very grateful he is willing and able help with Riley.