Lois update

Please read Catherine's latest blog post:

Lois

Not all hope is gone.

It's Definitely December!

Yep, I always take the month of December off from homeschooling.  We have so many other things to do that we'd go crazy otherwise.  Recitals, parties, fun outings, helping friends, etc.

Last week we spent a night at Great Wolf Lodge in Williamsburg.  They had a homeschool discount, and we had friends who were staying there too.  It was lots of fun.  We picked up Chris and his roommate for the evening and they had fun at the water park.   Hannah and I were a bit wimpy--it was chilly in there!  But we did go down a few waterslides.

(Hannah says, "Now THAT'S a Great wolf!")

She also asked what you call a bunch of wolves.  I said, "A pack.".    She said, "No.  It's a gang, right?"   She was being serious and I didn't understand where she came up with that.  We talked about other animals: a herd of cattle, a gaggle of geese, a pod of dolphins, a pride of lions, etc.    But she wouldn't let go of the "gang".   Finally she said, "Mom.   It's called a Wolfgang."      Totally. cracked. me. up.


Here in Virginia we've already had three measurable snowfalls!   And it's not even winter yet!

Hannah worked hard on the Gingerbread House.  Mostly by telling me what to do.  But she did do the roof, and added all the candy.  And ate a good portion as well.

We picked Chris up from school last night.  Tonight we decorated the tree, which was nice.  We have a tall skinny tree this year.   And Hannah wanted to put the angel on top, so she used a step ladder (she's a bit afraid of ladders--she doesn't trust them).  We were proud of her for doing it!

There was just a little bit of time left before bed, so Hannah and Chris had an all-out dirty-sock war.

Hope your family is having fun, spending time together, preparing for holidays!

Sweet Lois, update

Today I received a Christmas card from Catherine.   There is the cutest picture of a bald little girl, smiling.   Her little brother is grinning with his bright eyes.   So cute!

A few weeks ago I had the pleasure of spending the night at the hospital with Lois.   I have to tell you how amazing this child is.   She had an off-and-on fever, living in the hospital for 10 days or so, with no real end in sight.  She was recovering from a strep infection which landed her in some serious danger--no immune system, so no easy recovery.   When I was there, she was bouncing back.  I couldn't believe how easy going she was!  She was pleasant and friendly to everyone who passed by her door.   She had the cutest little twist of her hand to wave to everyone.  She never complained.   She was gracious to all who entered, even though they were wrapped in disposable plastic gowns. masks and gloves.

This is an honorable child.  She carries herself with dignity.

I had been a little worried since Lois doesn't really know me much at all.   I've kept my physical distance through all these months of chemo treatments since I never wanted any of my potential germs (or Hannah's) to reach her.    But she was just as pleased sitting in my lap as if we were old friends.   Of course, I did bring a bribe.  I didn't need it, but she did really enjoy the new Elmo book.   We sang songs, read stories, talked about dogs (a favorite topic), we cuddled; she smiled!  I tried to take a self-portrait with Lois (didn't come out so well, but at least you can see her sweet smile!).

It was bedtime, and she pleasantly snuggled down with her dolly and her blanket.  Never made a peep.   All through the night.  The IV machine was beeping (VERY LOUDLY).  Vitals had to be taken.  Blood draw. Diaper change.  Oral medication.  Adjustments to the IVs.   Plenty of interruptions, but Lois slept through nearly all of it.  And when she was awake, she didn't fuss.

Totally amazing child.

She wore a t-shirt that said "Fight like a Girl" on the front.  And on the back it said, "Win like a Woman".

A few days later she was well enough to go home.

The next week it was determined that the most recent chemo potion didn't do the trick.   So now she's getting a new concoction--this time it's outpatient.   The goal is to get Lois to remission, or close to it, so she can have her bone marrow transplant.   Lois is still moving forward.  

I am amazed at how much Lois has learned over this past year.  She's signing, saying words.  And she's mighty fond of medical equipment.  The girl knows her way around pulse-ox monitors like nobody's business.   She was working on taking my blood pressure when I was there.    She's got a sense of humor, like her parents.   She's got an easy smile.  And an extra portion of love.

Leukemia is awful.   There is nothing good about it.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Good news: There is something you can do!

Join the Bone Marrow Registry.   You could save a life.   It only takes a cheek swab to join the registry.  Totally painless.  Totally worth the 10 minutes it takes.  Go here to order your swab kit!

If you're local to Richmond, you can join the registry on January 8th at our Save a Life Like Lois's bone marrow drive at Ginter Park Presbyterian Church..   You can volunteer there too, if you want!  Hannah and I will lure you in with our baked goods...

If you won't, or can't, join the registry (you have to be 18-61 years of age), then please consider making a contribution to the registry.

Lois needs a bone marrow transplant.  So many other children and adults need transplants.  You really can make a difference.   Honor this remarkable child.  She's fighting hard and she could use some champions on her team.

Christmas is Coming to Town!

Personalize funny videos and birthday eCards at JibJab!

Back to earth

So...I'm really still here.  I have approximately 8 half-written posts, none of which I expect to finish before spring...I just can't seem to to get up off my duff and move forward with them.

So, I'm moving on with light and fresh stuff!

This is our newest addition to our Christmas Cookie repertoire.   Pretzels, mini-chocolate chips and a cinnamon red hot.  Easy and fun!

(I'm adding instructions for all of Natalie's readers:   Roll out sugar cookie dough.  Cut free-hand or use a 3" biscuit cutter.  Squeeze the sides together a little bit to shape the head.   Add pretzel antlers.  Bake for regular amount of time.  While still hot on the cookie sheet, add the chocolate chips and red-hot (or M&M).  Ta-dahh!)

Hannah and James went to see Yo Gabba Gabba Live a few weeks ago. They had a great time, and last week she was reminiscing about it, so she drew this picture.

Friday was Chris's last day of classes for the semester (2 weeks of exams coming up!).  We helped him celebrate by going to Busch Gardens Christmas Town.  It was FREEZING (at least, by Virginia standards), but we had a good time.

Yesterday Hannah performed in a concert, singing  "Somewhere Over the Rainbow" with a choir.   She has been taking music classes privately this fall, and she can *mostly* match pitch to familiar songs (this is a big deal to us, a family of musicians, and also an unusual skill in the Down syndrome population).   Since she worked so hard, she was invited to join the choir for one song.

This video is of a rehearsal--the cameraman at the actual concert sort of forgot that there is a zoom feature on the camera, so Hannah is only about 3mm high in that video.

Make video montages at www.OneTrueMedia.com

After a celebratory ice cream sundae, we went tree hunting!  We found a nice tall skinny one, and will put it up in a couple weeks when Chris comes home.

Hope you're enjoying the start to the holiday season!

Nan Talk

Science camp can have it's own post once I finish enjoying this extra-long weekend (+ 1 hour).

But here's a quick taste of Nan's camp humor:

#1. Our beach residence was Fiddler Cabin.   I was explaining the name to Hannah (there was no Fiddler on the Roof).    She said that she thought our cabin ought to be named Fiddler Crabin.

#2.  We were walking along the wooden walkways, and I was constantly prodding Hannah to go faster.   Exasperated, she said, "These are boardwalks, not board-runs."

Wonderful

Here's my little girl, ages six through nine, and a little bit of ten.

Make an on-line slide show at www.OneTrueMedia.com

#31/31 Guest Post! Prenatal Diagnosis-A Friend's Journey

After I posted the link to the new Down Syndrome Pregnancy site I received an email from a local friend. Bobbi was enthusiastic about the site since she has a young baby with Down syndrome.  I asked her if she'd like to tell her prenatal story.  Since I didn't have a prenatal diagnosis, I never had the turmoil and roller coaster feelings during pregnancy that comes with an unexpected diagnosis.  Thank you Bobbi for sharing your experiences with us!  Sorry I couldn't get this posted in October, but you make a terrific finale for the marathon month of blogging!
-Beth

My world is Perfect

     It’s fitting for me to be writing this during this month of Ds Awareness because my Ds journey really began a year ago.  In October 2009, I found out I was pregnant. My husband Mike and I were excited, anxious, fearful, happy, but most of all - Scared. It was four more weeks before we saw the doctor and all I could pray for was a heartbeat. We were scared because just a few months earlier we had a miscarriage; we had never heard the baby’s heartbeat.

      Nov 8th:  I made the doctor’s appointment for the last appointment of the day, so if we did have the heartbreak like last time, we didn’t have to worry about going to work or facing the rest of the day.  Isn’t it odd, that while I was going through what should be a wonderful and great experience, I went into defensive mode.  We heard great news!  A heartbeat, or, as the medical world puts it - we have a viable embryo. We were only 8 or 9 weeks pregnant, but went ahead and shared the news with good friends and family.  I was looking forward to hitting the 12 week part and getting past the next set of tests: transnuchal and triple screen. 

     Dec 3^rd : I woke up with a sense that my life was going to change forever. It was ultrasound day, when I’d find out if my “advanced maternal age” was going to be a factor in this pregnancy.    I felt hesitant and tense; however, I put on a great acting job for my husband.  He was feeling anxious and tense as well.  I assured him that all would be just perfect - words to remember.  I also remember telling him that no matter what, we had each other and that we survived our summer, so it was now our time for joy and good news.  Looking back, I said those words to not only convince him but to also convince myself.  We arrived at our appointment and went through the routine of the ultrasound. The technician talked to us the whole time, pointing out the head, arms, and feet of the baby and explaining that she has certain things she measures.  She never explained what it was she measured or if those measurements are OK and we didn’t ask.  As she left, she said, “The doctor will be right back to talk to you”.  I felt my anxiety start to disappear. 

      The doctor popped in and the next half hour turned into eternity.  I don’t remember hearing much except “I don’t have good news.”    “You have less than a 1 in 5 risk of Trisomy 13/18.”   “You are at a 1 in 5 risk for Trisomy 21.”  “You have time before you have to make any big decisions”.

      In addition, he discussed genetic testing options (CVS or amnio) which would tell us exactly what, if any, chromosomal issues were.   I was crying. I was confused.  Through my tears, I remember asking the doctor, what is Trisomy 13/18/21 and what decisions do we have to make? I don’t recall his answers, nor do I recall really much of anything else.  I just remember feeling that I needed to be out of the examining room and I needed time alone with my husband.

      The doctor was very understanding and moved us to his office.  I cried—it felt like forever, but was probably only 1-2 minutes.   How, what, who or why – but clarity came to me and I looked my husband in the eyes and I knew he was thinking the same thing as me ~ we had to know “what is going on”. We would move forward with the genetic testing.  (I could digress into the CVS vs. the amnio procedure since I had both, but I won’t. Suffice it to say I would not recommend the CVS).  

     The week between December 3^rd and 11^th was a time when my husband and I went into seclusion. We cancelled plans, and stopped talking to friends and family. I researched Trisomy 13/18 and 21.  Neither of us talked much – it wasn’t bad or tense--we just kept our thoughts to ourselves.  I remember my best friend sending me a text asking how I was doing.  I replied that I was numb.  I had no feelings, good or bad – I was just numb. I didn’t know how to feel or what to think. 

      December 11^th: Amnio day.  It wasn’t nearly as traumatic as one would think.  I don’t do well with needles at all; however, this was very uneventful.  It literally felt like having blood drawn (I didn’t dare look at the needle).  The doctor did a great job and I left his office feeling hopeful.  At least I would get an answer to the question – “What in the world is going on?”  From there I could make educated decisions about my family’s future.

      Of course, the weekend and waiting was long.  The following Monday and Tuesday dragged out and finally on Wednesday as I was sitting down for a meeting at work, my cell phone rang.  I hopped out of my meeting and took the call in my office.  My doctor then delivered the news that my child has Trisomy 21. Two thoughts went through my head, “Whew! It’s only Trisomy 21!” and then, “Oh my goodness, it is Trisomy 21!”  I asked the doctor if we could meet with the genetic counselor at his office since I knew my husband and I would have a lot questions.  I hung up the phone, and as if nothing had happened, I walked right back to my meeting and participated for an entire hour, fully engaged.  To this day, I’m amazed at how I pulled it together.  After my meeting was over, I walked out and went back to my office, shut the door, and cried. At some point, the genetic counselor called me and we arranged to meet that afternoon.

      Now we were at decision time – we knew the answer to “what is going on”, but what do we do with this information? I was scared.  What if my husband and I weren’t on the same page on how to move forward?  Before we were pregnant, we had talked about my age and the risk. At the time we said that we didn’t care. But now that we were faced with the reality, did we still not care?  I knew where I was in my heart, but I wasn’t sure about him.  I was more upset about the possibility that he and I would not be at the same place with our decision than I was about the actual diagnosis.  I had 2-3 hours to wait before I could speak to Mike.  I thought of all the directions our conversation could go. I was fearful for us.   

    Well, I wasted a lot of energy worrying over nothing because when I walked in the house my husband was at the kitchen counter.  I didn’t say Hi. I didn’t ask him how he was doing – I asked him “Gut check, where do you stand on this?”  He looked at me confused at first, not realizing what I was asking.  When he realized what I was asking him about, he said “Oh, we are having this baby”.  At that point, I just cried and hugged him for a very long time because I knew that no matter what, we were moving forward together.  We both knew that there was a loving child that we created and that no matter what, this child was a part of us.

 

      Later that afternoon, we met with the genetic counselor and after her repeating our “options” to us a few times, I spoke up.  I said that we were moving forward with our pregnancy and there were no other decisions to make.  At that point, I was given a good amount of reading material, websites to visits, and a DSAGR brochure (Down Syndrome Association of Greater Richmond, VA).  Our counselor was very helpful and answered our questions, which mainly focused on potential health problems, quality of life for our child and other general information.   She followed up with a reminder that the doctor would want to see me at 18 weeks gestation so he could look possible defects in the baby’s heart.

    Mike and I left the office and spent the next week or so in mourning. It’s odd to say that we were mourning our child, but it’s true.  We grieved for the child we thought we were having, but were not.  We were lonely because no one else was dealing with this and we didn’t want to be the only ones. We were jealous of our friends having typical kids. I don’t think it is possible anyone can avoid grieving.  Mike and I each grieved in our own way.  Mike was quiet and worried about his child being bullied at school or made fun of.  I cried silently at night and worried about my child’s ability to be independent.  We both worried about the potential health issues that our child could face, as well as being accepted by his peers socially.  We were fearful of what our friends would say, would they support us and would our peers accept us?   I spoke to very few people in those weeks, including Mike.  I knew our families loved us and supported everything we did, but I wasn’t ready to talk. If I talked, I cried.  I received emails with poems and the essay, “Welcome to Holland”. I Googled everything I could find about Down syndrome (and found Hannah’s Shenanigan’s website).  I thought of a dear friend who had a child with special needs and I realized how I never supported her enough. That made me feel like a horrible friend.  I spoke with another dear friend who connected me with her sister whose child has Down syndrome.  I had met the sister over the years, but never her child. It was wonderful to have her introduce me to the world of Down syndrome, to answer our questions, and to give us hope.  She also introduced us to the DSAGR and made our entrance into this new community very easy.

      Finally, on Christmas Eve, I came up for air.  I reached the point of acceptance where I could wipe away the tears, and rejoice in my loving child.  It was time to move forward.  I felt empowered because I knew my child’s diagnosis.  I could educate and prepare for whatever was in store for me and my baby.  I made a promise to my unborn child and to myself that I would never stop educating myself and I would do whatever was necessary to make sure he lives a VERY normal life.  Over the next eight months that is exactly what I did.  I read everything I could.  At one point, I had to remember I was having a baby and needed to put aside the Ds material and learn how to take care of a baby.  Don’t get me wrong, the emotions did not suddenly disappear. I still cried at night when the lights were off and everyone was asleep.  The worst were the dreams I had while pregnant.  You always hear that pregnancy makes you have crazy dreams; mine were crazy and always ended badly.  I would cry often in the shower after a night of bad dreams.  This way Mike wouldn’t hear or see me.  I never wanted to worry him. I would share a few things with him, but not everything because I knew he had his own fears and anxiety.  I felt that Mike and I had an unspoken understanding for each other’s feeling.   For the first 8 months of my pregnancy, it seemed that we would never walk out of a doctor’s appointment feeling the way new parents should feel – happy and excited.  At our 18 weeks check up the ultrasound determined that our baby had a heart defect.  In addition to the regular visits to the perinatologist, the regular OB, we added the cardiologist to the list of doctor’s appointments. To the outside world I handled the process by making light of it all and trying to see the humor. Internally, I would process it, have a private cry and then move forward.  However, after reaching a level of acceptance, I embraced everything and never allowed myself to regret or look back. I could only move forward.   

The grieving process is different for each person. I reached my moment of acceptance much earlier than Mike.   He was very interested in learning along with me, but emotionally we were at different points in the process until March 1^st.  That was the day we emailed a close group of friends the news about Baby J. Up to this point, we had shared the diagnosis with our families and a few of our friends.  This was our first test to see who would be accepting or whether we would have to skinny down our Christmas card list! I wasn’t too worried because I knew our friends loved us.  Mike was more anxious.  As the day moved on and the emails of support and love came back, we knew that we had made a giant step and we were stronger because of the additional support.  I never heard an “I’m sorry” or sadness from our friends (nor from any family member). My email to the group was positive, loving and upbeat.  I told them how blessed and proud we are of our little baby boy and how excited we are to meet him.  I also attached a recent 4-D image of an ultrasound.

      Finally, after the long and emotional pregnancy, our beautiful son – Owen – arrived on June 7, 2010.  Throughout the pregnancy I heard that babies with Ds come early.  But not my boy!  He was right on time and didn’t want to leave his cozy womb. The first few weeks after Owen was born were fuzzy.  I remember the NICU doctor declare that our son was healthy. He wasn’t going to admit him to the NICU unless the cardiologist wanted it ~ he didn’t.  The social worker met with me in the hospital and I could tell she was hesitant and unsure of where I was emotionally.  However, after a few seconds of hearing me speak so proudly of my son, my knowledge I had of Ds, the local support group, early intervention – she left saying I taught her a few things and she would send my referral onto the County for early intervention services.  We told the rest of our friends and co-workers the news of Baby Owen.  More positive support and congratulations came our way.

      Where am I today? I’m a proud mama of a beautiful baby boy.

      I’m watching in awe as he grows and develops.  I love to hear his giggle when his daddy tickles him.  I’m enjoying my time with my family and trying to balance work and personal life.  I’m also re-reading my Down syndrome books and papers because now I have a reference point in my son and things make sense to me.  I’m continuing to educate myself on feeding, speech, and child development (muscles and cognitive).  I’m actively involved in Early Intervention with my son  and thinking about not only the “now” in his life, but the future. I pay close attention and ask many questions when visiting his pediatrician.  I don’t assume anything and keep as much detail as possible. If I hear something interesting about Down syndrome, I Google it or ask another mom.  I’m developing relationships with other families, relationships that I will have forever. 

After the many emotional ups and downs, worries and fears ~ My world is perfect and I wouldn’t change a thing.

       

     

      

#30/31 Boo!

Well, I bet you were expecting Hannah to be Pippi Longstocking!  

Nope!  I was hoping for twin Pippis, but Hannah was not going for it.  

She wanted to be a clown.   She had a good time trick or treating with a couple of her Southern friends (that's Shea who is the witch!).   Unfortunately, this is about the best picture that I got.

Tomorrow we'll be at our science camp, and won't have any internet access for several days (wouldn't you expect scientists to have internet access???)   I'm one post shy of finishing all 31 posts.  I actually have the post ready to go; it's a guest blogger, and I needed her final OK to post it.  But my computer won't let me send email (even webmail!) if I'm using someone else's internet provider.  So it's going to be later in the week before I get it posted.  It will be worth the wait!

Thanks for reading all through October!  It was both fun and exhausting!  I'm much more of a 1-2x a week blogger.

#29/31 Dancin' with Nan

I'm'a gonna have to change my password or something--obviously someone has hijacked this blog!!  Clearly someone else besides me loves this Nanabird.

Did you know that the Cherokee people had seven clans?  We decided that Hannah would've been a member of the Bird Clan.

If there was Dance Clan, she'd opt for that one, she loves it so.

Visitors are welcome to the last five minutes of Hannah's dance class.  I take the opportunity to video the class so Hannah can review the music and movements. She's coming along, regularly a half-beat behind, but she's getting better.

This is a routine they've been working on for a few weeks. It's not yet complete. Hannah loves it because the music comes from Toy Story 3 and all the dancers are pretending to be toys/dolls.

Hannah is the one wearing all black except for a white waistband from her shorts. She's on the opposite side from where I was filming, so I mostly have her reflection in the mirror.

Make an on-line slide show at www.OneTrueMedia.com

#28/31 Guest Post!

Hi everybody!

It's your friendly neighborhood Peace Corps Volunteer, Kate.  In answer to your question, Mom, I own this blog!  At least for today.

Ever since Mom asked me to do a guest post, I've been trying to think of what to write.  I don't really want to write about Jordan, because I get enough of that in my daily life (ha!).  So I decided to write about when Hannah was born.  I'm sure this story has been on the blog at least once before, but not from my perspective!

Hannah and me, ages 7 and 16

When Hannah was born, I was 9 1/2.  I was so excited when Mom told us she was pregnant, and argued with my brother for months about whether it would be a girl or boy (I won! He was so upset at the ultrasound...).  He also wanted to name her Guinevere.  Glad that got sorted out. 

When Mom went into labor on March 12th, I stayed up with Dad timing the contractions, until we got shipped off to a friend's house for the night.  Hannah was born at 12:51 AM on March 13th!  The next day, we went to the hospital with my grandparents.  I was pretty surprised--I hadn't seen a newborn baby before, so I had an image in my head that they came out all chubby and beautiful.  Not the case.  She was little, wrinkled, and red, and slept the whole time in her little swaddling hospital blanket--I couldn't even feel her through all that cloth!  After a while, we left to stay with friends.

Later that day, things went downhill for Hannah.  I later found out that they had taken Hannah away because she wasn't breathing correctly, and the doctor had come in and told my mom her baby had Down syndrome.  All I knew was that Hannah was in the hospital, and we couldn't see her. Mom and Dad didn't tell us she had Down syndrome.  I remember standing outside the glass door of the nursery (NICU?), and my mom pointing out which incubator was hers.  She looked like a giant, since all the other babies were preemies!  Over the next three weeks, Chris and I made signs to hang on her incubator, and visited the hospital with Mom and Dad.  I had no idea how serious Hannah's situation was.  I thought there was no doubt she'd get all better and come home.  I remember watching them move her incubator into an ambulance to take to a hospital more equipped to deal with her medical issues (pulmonary hypertension--high blood pressure in the lungs, which stayed with her in some degree until she was 2).  When I was considering this blog post, I wondered why my parents would take us to see that happen.  Now I realize they were worried it would be the last chance we would get to see our sister.

After she was moved to Carolina Medical Center (CMC), a nice NICU nurse snuck Chris and me in to see Hannah (parents only allowed).  It was crazy--Hannah went from a little raisin to a big grape, because of all the water she was retaining.  She had funny sunglasses to protect her from lights for her severe jaundice, and tons of tubes.  As we left, we walked through the pediatric unit, with jungle animals painted on the walls.  My dad made an offhand comment: "If Hannah has her heart surgery, this is where she'll stay."  I can picture clearly in my mind the glare my mom gave him.  I knew something was up.  On the drive home, just past the cement truck intersection (every time we drove past it, there was a cement truck!), Mom explained his comment.  She said that Hannah has a problem with her heart, and is going to need surgery.  Chris and I started crying. I asked, "What else is wrong with her?"  Then she said that Hannah has Down syndrome.  I said "NO!" and kept on crying.  I must have had some idea of what Down syndrome meant, otherwise I wouldn't have reacted, but I couldn't remember seeing anyone with it, though I know I must have.  Mom asked us what we thought Down syndrome meant, and I think I said something like "It means she'll be stupid."  I was so upset.  I don't think "devastated" would be too strong a word.  First, my little sister wasn't chubby and beautiful.  Then, she was in the hospital forever.  Now, she had Down syndrome, and had to have heart surgery.  Mom said she hadn't told us before because she wanted us to get to know and love Hannah before we knew she had Ds, so that it wouldn't matter to us.

Once Hannah came home, it didn't.  Mom dressed her in a starfish outfit, with a hat I hated, but she was still really cute.  She was a great baby.  When she smiled, she would open her mouth as wide as it could go, and we would kiss inside it.  We called them "moon smiles."  We met other babies and children who had Down syndrome, and started attending DSAC, the Down Syndrome Association of Charlotte.  Growing up, I always knew she had Down syndrome, but I never thought about it when I looked at her, or played with her, or she let me hold her (when she was a little older, she didn't want anyone but Mom touching her--Mom would hold her, and then we'd have to pretend it was Mom's hand rubbing her back, not mine!  Whenever she figured it out she was so mad.).  She was going to therapies, started crawling (with one butt cheek up in the air), started talking ("woof" meant "dog" at 9 months!), signing ("more!"), and reading sight words.

As she grew up, she was just Hannah.  Yes, I knew she had Down syndrome.  I knew she would have a tough time learning.  I knew other kids might make fun of her.  But she was still my sister.

As my mom said a while ago, I wouldn't take the Ds away from Hannah, if given the choice.  She is such a strong, beautiful, smart, independent young woman, and I know that without having to work harder for things that come easily to others, she wouldn't have the strength of character and mind that she does now (read: stubborn).  While I don't think she really gets what it means to have Down syndrome yet, when she does I hope I'll be there to explain what it was like for me when I learned she had Ds, and how it never stopped me from loving her, just made me love and want to protect her more.

at Easter Seals camp for kids with Ds and their families, last summer

If it weren't for Hannah, I wouldn't be halfway around the world teaching Special Education.  I wouldn't want to adopt children with Down syndrome.  I wouldn't call people out on using the R word (well, maybe I would.  But not as passionately).  She's the Baby Boo to my Sully.  The Nemo to my Dory.  The Murray to my Anthony (.....or Jeff).  I love her, and I love that she has Down syndrome.

at the DSGR Buddy Walk last year

#27.5/31 Honey, I Shrunk the Kid!

I heard grumbling all the way from Jordan telling me that my previous post didn't count for 31 for 21.    Hey!  Who owns this blog anyway??    Who is the Mamma?

But I do see her point.   So here are a few pictures of my 21st chromosome mutant to make up for the boring pre-trip post.  (Don't be hatin' for that mutant comment.  It's technically true, and I say it lovingly and humorously! And I love her mutation--she's adorable.)


On yesterday's southwesterly journey we took a midday break at the Greensboro Children's Museum.


Honey, I shrunk the kid!

In keeping with her new fascination with civil heroes, here are two of Hannah's latest career aspirations.

And if those don't work out, she's going to be on the pit crew for Lightnin' McQueen (or other race car, like Hot Wheels).

We hopped back in the car and made it to Flat Rock, NC without much trouble.

I have internet access here, but for some reason I cannot send emails.  Maybe that's a Comcast problem or some server glitch.   Don't think I'm ignoring you!

#27/31 Out of town, again!

So we're off on our next adventure!  Hopefully this will post as we head out the door at 8 a.m.   We're on our way to the North Carolina mountains.  We'll be staying in Flat Rock tonight.  Our good friends Chuck and Janet live there.   We met them when we were young parents--Kate was 2 months old--and James was stationed in San Francisco.    We lived in a tiny apartment in San Leandro, near Alameda.   Chuck and Janet took us under their wing as we were but poor, lost circus performers new parents lost on the West coast.  They've been cheering us onward, through many moves and trials.  They've been champions for Hannah since the day she was born.

Just about the time our family moved out of North Carolina, Chuck and Janet decided to move there!   We do get to see each other more than the 15 years we lived on opposite coasts.   And fortunately for us, they don't mind giving us room and board for a night while en route to the Museum of the Cherokee Indian.  

It's almost a 7 hour drive to Flat Rock.   Then another 90 minutes West to the museum (tomorrow).  Then another 3.5 hours East to my parents house in Tega Cay, SC.  We've packed videos, books on CD, a new coloring book and snacks.   Should keep us happily going!

I'll check in when I can...I have two guest bloggers chiming in soon, and I hope to squeeze in a Halloween post too!   I'll be home next Thursday night.

#26/31 Art

Hannah completed her art session at our local Homeschool resource center on Monday.   Miss Jennifer is a great teacher!  Hannah's been taking classes with her for over two years.   Usually I stick her in the 6-11 year old class, but she's outgrown it (physically); she doesn't really fit in.   This session Miss Jennifer offered a new class for advanced students. Over the course of eight weeks, the class would work on just two projects, one was pencil, and the other was acrylic on canvas.  The focus of the class was on color scale--from light to dark tones, shading, etc.   Now, I wouldn't ever intimate that Hannah is an advanced artist (yet), but it sounded like a class she'd enjoy.  And the age range was 10-15.  Perfect.  Jennifer and I chatted and she quickly said she absolutely would love to have Hannah in the class.

Everyone in the class did a similar drawing, with a ribbon through the fingers of their hand.    Then Jennifer connected each drawing and built a long accordion style book.

(click to enlarge)

Hannah really enjoyed this project!  (She managed to squeeze in a little bit of an electric guitar in hers too.)

Her second project was a little more challenging.  The teacher brought in a variety of glass bottles.  The students were to imagine something made out of them.   There was a charcoal sketch, and then a pencil outline on the canvas.   They had to pick one color and make a tone scale (light to dark). Her favorite color is red (like Murray Cook, the Red Wiggle, and like Lightning McQueen).

Hannah thought about a castle.   Here's her charcoal sketch:

And her final painting.   My favorite part is that little duck in the bottom right corner. (And that other creature is a pony, not a rodent. I think the thing that looks like draperies is a stall in a barn.  Not sure though.)
 

She was very happy with the class, and she's proud of her hard work.  She's looking forward to starting a new class in January.

#25/31 Learning from Others

Sometimes homeschoolers are a little too insulated.  

We generally don't use any profanity in our house, nor do we use slang for anatomical terms.

I remember when Chris and Kate were about 9 and 11.  A neighborhood kid used a word that they didn't understand.  So they asked us what it meant. It was slang for a "male private part".

James and I decided that we needed to give these kids a real education, so we calmly taught them every single foul word we knew.  (Don't forget James was a sailor....)

We spent a week politely saying things like:
"Where the *&% did I put that #$*@-ing washcloth?"    It was great fun!

Fast forward a decade or more, and we are having the same problem.  Well, it's much lighter weight than male body parts at this point.  

One of Hannah's friends (typically developing) was at our house the other day.   He was saying something about farting.  In our prudish house, we use the babyish term "toot", or the more formal, "passing gas". (As an aside, as a child, my circumlocutory family used the term "effluviate" for any malodorous fumes.)

Hannah figured out what "fart" meant by using "contextual cues".

She and L. had a great time making farting noises.   They used the word "fart" lavishly. For quite a while.   It was a bonding time of sorts.

They later had fun playing paper airplanes, PlayMobil, and Hot Wheels.  And no residual effluvium.  It was a fun play date.

L's mother later inquired whether her son behaved well.   I said yes, aside from teaching Hannah the word "fart", but that didn't count. Hannah was long overdue to learn that one (and learned it well, she did!).   I'd much rather have her laugh when it is appropriate than to not understand when something is funny.

Kate Update

A couple days ago was Kate's one-year anniversary in Jordan.    It's gone by quickly, and also s-l-o-w-l-y.   It's been less than three months since I was there, but it feels like I was there ages ago.

Kate has been having a challenging time in Jordan--everything is more difficult than it should be, and she's been frustrated with several situations.   But now that she's counted down her first year, she's got a new countdown--she just bought her tickets for a visit home!   She'll be coming home for a few weeks in late January!    We're so excited!   Three months until she's home! Can't wait!

#24/31 Quick Cookin' with Nan

More like, slipshod Cookin' with Nan....

Monster Toast!!

Get your bread.  White is best for this kind of toast.

Then make colored milk.  I picked red, blue and green.

Swirl the color around in the milk.

Then use a paint brush (we have ones specifically designated for food) and make a funny or scary face on the un-toasted bread.

You can paint both sides of the bread if you want.

Pop the bread in the toaster.  Don't make it dark toast or you won't see the monster faces!

The monsters are coming out of the toaster!!

Butter them up!

 And become a monster slayer!

#23/31 Running Away from Home (Me!)

So, I'm falling behind this 31 for 21 deal...and it's likely to get worse.  Hannah and I will soon be traveling for a week (Hello North and South Carolinas!).  So I'm officially petitioning for an extension of October so I can complete this challenge!

I ran away from home on Saturday.  I had a good weekend away with two Sisters of the Chromosome-hood, Wendy and Donna.    We had an overnight escape to a cottage on the York River, near historic Yorktown (of Revolutionary War fame).

We spent our time shopping, talking, eating, talking, mojito-ing, talking, sleeping and talking.   As it should be!

Donna and Wendy each have two daughters with Down syndrome.  Between them, they have one kindergartener and three 1st graders.  That's a whole lot of activity!  I know they needed the escape more than I did, especially since they each planned and executed a Buddy Walk in their town this month (and Wendy threw in a Golf Tournament as well for a good measure of insanity).

It was a wonderful time to share--without interruptions.

This extra-chromosome thing is really a sisterhood.  It's also a family tree.  Those of us who have a family member with Down syndrome really are connected genetically.   I don't know where I'd be without my extended Ds family.  Probably up the York River without a paddle.   Thanks, blogworld, for being part of my family!