Stats

 One of the biggest shocks when Reagan was diagnosed with Down syndrome was the sheer number of doctor's appointments and tests there were just to make sure everything was functioning like it should.
 

Reagan has had more doctor's visits, ultrasounds and blood draws in her 1 year of life than I have in my 31.  Seriously...I'm not exaggerating!  And ironically for the most part she was very healthy.  Yes she had a heart defect and the cardiologist visits started to come with more frequency until surgery as did the pediatrician visits due to her weight loss from heart failure, but she has had no other concerns.  So since surgery the doctor's visits have become practically a rare occasion. :)  She did just have her one year visit.  I am pleased to report that she is continuing to be an adorable, but boring patient.

 She now weighs 14 pounds and measures in at 26 inches.  All her blood work is normal and her heart is ticking like it should.  We do have a few scattered appointments coming up in the next few months, but considering we were averaging more than 2 per week early on this is a piece of cake (never thought that I would be so immersed in the medical community).

Coming up over the next two months we have ears, eyes, heart and new therapy goals.  But this little girl is healthy, happy and GROWING!

In case you were wondering, yes I made this cake :)

What's not to Love? (31 for 21 post 6)

Each Thursday in October bloggers participating in 31 for 21 are writing about our take on the same topic.  This week's topic is what is one (or more) thing you love about Down syndrome.  I have had fun today reading the various takes on this question.  Some adorable physical traits.  Some personality traits.  Some changing world views.  I was pondering my own answer and having a hard time with it.  What don't  I love might be an easier question to answer.  I could (and probably will later) go on and on about the things I love about Reagan's Down syndrome.  But that is to be expected as I am her mother. :)  So, being inspired by my reading today, I asked some of the people in Reagan's life what they love about Down syndrome.
 Daddy:  What she has taught me.  What I have learned about myself and how it has brought out the best in me. I am a stronger person now.  I've learned to let go and trust God.  I've learned a lot of life lessons in the last year.

Grammy:  #1  I actually like the uniqueness- our other kids can just sort of skate by in our imaginations early                  on as typical, but Reagan was unique from the start.

               #2 the challenge of learning something new and putting out to help her get where she can do all she can--makes me pay better attention

               #3 I like the "reason" to play with her more than normal

               #4  I just see "special" as good

Auntie Megan:  The sweet faces and the spirit they have.

Me:  I love the passion she has brought to my life.  I live fuller, love more deeply and see more color in the world because of one tiny extra chromosome.

And one more bonus interview just to make you smile.  When I asked (4 year old) Clarisse what she loved about her sister..."she's got Down syndrome"  well baby what do you like about her Down syndrome?  "she was born"  I guess she's just happy to have such a cute baby sister. :)

Tell me what you love about Reagan, Down syndrome, or both and I'll add it to a grand finale list later this month.

The Value of "Functioning"

If you know me you know that I don't do political correctness, so please don't mistake this as a rant on proper terms.  However, there are times that I think some commonly used phrases don't do justice to what they are talking about.

Case in point: the classification of "functioning" levels for people with Down syndrome (or any disability) just looks in the wrong place for value.  Really, what defines "function".  Here's the dictionary definition.

Functioning: Verb
    1. Work or operate in a proper or particular way.
    2.  Fulfill the purpose or task of (a specified thing).

The first definition seems to apply more to a refrigerator or washing machine :)  And the second begs the question what is the specified thing.  It doesn't really leave room for the classifications of  "high" or "low".  Rather it implies (for people)  that each of us has a different purpose.  Now that is more like it. 

Reagan's Grammy says it right when she talks about Reagan "maximizing her gifts".  That is where we find value.  In the gifts of each individual.  And even better, when we view people in terms of their gifts, we receive the joy that can come from helping them maximize those gifts.  Ask any mom of a kiddo with Down syndrome and they will tell you that watching their kids achieve milestones is so much sweeter because of the work that is put into them.

As I was contemplating how I wanted to write about maximizing gifts I was reading through other blogs and it seems that I was not the only one with this subject on the heart today.  So I would like to share with you four other blogs that speak in different (and somewhat more eloquent) ways about this subject.  And let me know what you think too!

Tiffany, whose blog I stalk because I love her open, honest perspective writes about not judging a book by its "functioning" label.


Meriah writes about "suffering" from the perspective of a mom who has "walked a mile" in disabled shoes.


Amy must really live inside my head because she has taken all my thoughts and bits of conversation on this subject and put them eloquently down on paper blog.  I am a forever fan now!

Megan,  my very dear friend talks about her sister and her desire to bring home  her own precious gift. 

Every single human being has gifts...what are yours?  I think Reagan's are being cute and making people love her.  :)

Worthy? (31 for 21 post 4)

Today I have one question. 

What makes this little girl less worthy of life...

Then these two little girls?  Because by far too many people she is not considered worthy.  She is "a burden". Or "suffering".  Here in America we have tests to make sure our babies are not genetically "undesirable".  I'm going to be brutally honest here and say that it rips my heart out any time I hear about a baby killed because it wasn't perfect...that could be the little girl in the picture...it could be my little girl.
And it breaks my heart that there are sweet babies like my Reagan sitting in orphanages and institutions in Eastern Europe because they are not considered "worthy".  But they are wanted!  They have mommies and daddies and siblings and a little friend by the name of Reagan just waiting for them to come home.  I feel helpless in the face of the abortion rate here in America.  All I can do is try and educate those around me.  But there is something I can do to bring Autumn home.  And Sophia.  Helping bring these babies home is love in action.  I will help them know that like my Reagan, they are worthy of life and love.  Will you help me?  Pray for them.  Share ideas?  Donate?
P.S.  Baby A is Reagan and Baby B is Clarisse....even their Papa couldn't tell them apart :)

Which One? (21 for 31 post 3)

 Last October I was just learning about the world of Down syndrome and advocacy.  One of the things that really caught my attention was the idea that people with Down syndrome are "more alike than different".  This is an idea I intend to play with throughout this month.  One of the common fears, particularly for mamas who have a pre-natal diagnosis (not us),  is that their baby will not look like the family.  Misinformation can be cruel and the idea that people with Down syndrome all look the same and not like their families can hurt.  But it is not true!  Case in point:  I give you exhibits A and B.  One of these pictures is a newborn picture of Clarisse and the other of Reagan.  Can you tell me which one is which?

Exhibit A

Exhibit B

I promise they really are two different babies :)  Tell me your opinion and I'll reveal the correct answer tomorrow.

Beautiful Birth (31 for 21 post 2)

I had been having contractions on and off for a week.  After the very fast labor with Cadence I was nervous about know when it was real.  Lori told me that when it was real I would "just know".  I went to bed on the night of September 16th completely at peace about Reagan being born when she was ready.  I woke up at 5:30 and didn't really know why.  Then the first contraction came.  And I knew.  It was strong or painful...it was just...different.  So I lay there for a while thinking I'd go back to sleep if I could, but the contractions were nice and regular every 10 minutes, again not painful, but it was morning and I was excited about my baby so I got up.  I called my Dad and told him not to go to work, but that there was no hurry in getting my Mom out of bed and out here.  I restrained myself from calling Lori until after 7 since I didn't want to wake her up too soon :)  I told her she was right and that I knew it would be sometime that day.  Then Clarisse woke up and I spent some time cuddling with her and telling her that her baby sister would be born that day.  Then we woke up Daddy and told him not to go to work that day.  At around 8:30 my parents arrived and I cooked everybody eggs for breakfast. I had a chiropractic appointment scheduled for 10:30 which I wanted to keep since being in alignment can be really helpful in labor.  Through all of this my contractions were a consistent 7-10 minutes apart.  After the appointment my mom and I went to Target for some last minute shopping.  I don't remember why we went but I do remember getting this set of candles that I will always love for having acquired the day Reagan was born.

 After we got home I tried to eat some lunch, but suddenly my contractions were coming closer and I was feeling a little uneasy.  I didn't want to arrive at the birth center at the last minute again so I called Lori and told her I wanted to come.  She had prenatal appointments with other clients, but I didn't mind, I just wanted to get there and settle in and relax (it is an amazingly beautiful, relaxing place).  We got to the birth center at around 1:00 pm and settled into my beautiful birthing room.

 Lori took my vitals and went off to finish her pre-natals while my family and I settled in to play a game on the living room floor.  My family teased me about the time limit on my turn as I paused to breath through contractions every 5 minutes or so.

 Lori called me back to check my stats again right as I won the game (they all promise they didn't rig it while I was out of the room)  and I decided it was time to get in the warm tub for a while.

 Sweet bliss.
 I contracted comfortably in the tub for a little while until the other mamas were all gone for the day then I decided to get out and walk around the house for a while.

 Someone brought food for my family and I nibbled on some snacks I had brought and drank water as I roamed around.

 At a little after four I could tell things were really starting to move.  Contractions about 3 minutes apart that I could no longer walk through.  I kept moving and relaxing through each contraction for as long as I could and then I had to sit down so I sat on the ball while they re-warmed the tub for me.  I was feeling the slightly claustrophobic panicky feeling that always comes right before a baby is born.  Not so much painful as incredibly overwhelming and inescapable.

I climbed back in the tub sometime around 4:30 and again...sweet bliss.  (notice I haven't mentioned my water breaking...it never did)  I felt her moving down and tried hard to work with it and not against it.  At a few minutes before 5:00 we called the family in...the girls climbed up on the bed to watch their sister being born.

A few minutes of slow, gentle pushing and Reagan Candice was born (5:08) in the most beautiful setting and most relaxed birth I have ever known.  She emerged still in her amniotic sac which was cleared away as I pulled her up.

 I pulled her sweet, squishy body up onto my chest and looked at her perfect newborn face and as I kissed her head of dark hair...I knew.  My baby girl had Down syndrome.  Here's the thing though....in that beautiful candle-lit room, surrounded by love and high from a perfect birth, it didn't really matter.

Reagan's Down syndrome...birth preface (31 for 21 post 1)

Today is the first day of Down syndrome awareness month so it seems appropriate to kick it off with the story of how I started to become aware of Down syndrome.  With the birth of sweet Reagan.  It was the morning sickness that gave it away.  My beloved midwife warned us all that she was going to be gone in September and October of last year and to...err...plan accordingly.  With the busy-ness of the holidays and having just weaned Cadence I miss the fact that I was pregnant for several weeks until the morning sickness kicked in (not something I'd struggled with in my other pregnancies).  

A quick calculation told me that I was due when Lori was going to be gone.  After I started breathing again I decided to remember the lessons I learned through Cadence's birth, that God had a plan for me even if I didn't like it at the first look.  And if that meant no Lori then I would be open to what there was for me to learn from this experience.  An early ultrasound for dating and an adjustment of travel plans showed that Reagan was due Sept 20th, 5 days before Lori's departure for France.  Relief!  Joy! Gratitude!  Now to make sure she wasn't late.  Now on the the fun 20 week ultrasound where we got to find out we were having another little girl.  

Normal ultrasound with one tiny exception.  The report came back that she had an echogenic focus on her heart.  What does that mean?  Honestly nothing.  It could  mean a slight increase in the chance for Down syndrome.  It is a soft marker and the only one she had.  It is also present in 30% of Asian babies and Reagan is half Filipino.  I filed the report and though nothing more of it.  Until the week before she was born.  And then I started pondering what it would mean to be the mother of a special needs child.  I didn't obsess over it, but it was there on my heart and mind.  That was truly my introduction to the awareness of Down syndrome.

Tomorrow: Reagan's arrival :)