Saturday, April 28, 2012

A sunny day

Cora met another milestone today.  We had been walking outside and over to GG's house and back home again.  The sun was shining and Cora was babbling away, riding in her stroller and looking at all the farm animals.  It was a beautiful and warm day and it was such a blessing to be able to go outside since the last few days have been windy and cold.

Once back in the house Cora decided to show her own added blessing for this day.  She was able to get up on her hands and knees and rock back and forth in this position for a few seconds before her legs would slide out from under her.  (Up till today she has only been able to get up on her fully extended arms and sometimes tiptoes.)

I watched in awe at this wondrous event and then clapped my hands and signed "good job" while encouraging this new milestone.  Cora gave a big grin and tried it again, and again and again.  She succeeded almost every time she tried. 

Then she laid down on her belly, looked at me and signed "milk".  I agreed.  A reward was definitely needed after all that hard work. A beautiful ending to a beautiful day.

 Cora  wearing her outside bonnet. The old fashion style helps shield her from too much sun.

Wednesday, April 25, 2012

Cora gets her point across..

Cora had Early On therapy today.  She was napping on her play blanket when Veronica arrived for the physical therapy session.  Cora wasted no time in waking up and getting to work.  Today she was able to show off her sitting skills and balancing skills.  Cora showed Veronica that she is able to sit with little support from a person's hands on her hips and she also showed her skills at sitting in the Boppy pillow. 

Veronica decided it was time to see how Cora was developing in her grabbing skills when sitting.  Veronica had brought cute plastic, beanbag, colorful turtles and Cora's eyes grew big at the new toys.  Cora immediately reached for the toys and was very content in looking at them and holding them.  But Veronica was more focused on getting Cora to reach for the toys.  Veronica would hold one turtle off to the side and support Cora's hips while getting Cora to reach to the side for the turtle.  Cora had no problem doing this.  In fact she reached for the toys every time.  The problem was , Veronica wasn't letting Cora look at the toys for very long or letting her discover these new beautiful toy things.  I could see Cora's expression change from curiosity, to concentration, to disappointment.  Cora really wanted a minute to explore these new toys and Veronica was intent on the new skill.  Veronica was so intent on this new challenge that she forgot to take a few seconds to allow Cora the reward of reaching for the toy.  A simple reward of allowing Cora the time to explore the new toy.

After about five minutes of this Veronica tried to get Cora to reach for the turtle and Cora simply put her hands in front of her and wouldn't reach for the toy.  Then she very boldly babbled a few words, put her hands up and down, and then gave a big sigh and sat quiet.

Veronica laughed and looked at me.  I said, "I think she isn't happy that she doesn't get to play with a turtle before you take it away."  Veronica agreed.  Cora definitely got her point across.

By this time, therapy was over and Veronica said "bye bye" and waved.  Cora waved "bye bye" -  another milestone for Cora.  She not only knows how to get her point across she can also wave goodbye. A coincidence for today's happenings?  I don't think so...I think Cora got her point across in a few ways.  haha.

Sunday, April 22, 2012

Cora says "HI"

Today was a beautiful and warm day here in the Upper Peninsula.  The sun was shining and a gentle breeze was blowing.  The perfect kind of day for taking babies outside for sunshine and stroller rides. That's exactly what I did.  I took Cora out for a walk around the horse pastures and enjoyed listening to her babbles mingle with the birds chirping and the ducks quaking.  We have an increase in ducks in the creek and even saw a barn swallow checking out the old mud nests under the barn eaves.  Its was shaping up to be a beautiful day and Cora and I were definitely enjoying the weather.

Since the day was so pretty and the weather warm, the indoor arena was warm as well today.  I decided that at a year old, Cora was old enough to be introduced to my horse Taksi. Up to this point she has only seen them from a distance. I know that Cora won't be able to ride until after her spine
x-ray when she is two years old, but I figure she can at least get to know the horses now.

When I brought Taksi in from the pasture and led him up to the stroller (Big sister Emily had the camera ready) Cora just stared at him with those big blue eyes of hers.  She looked at me and I signed "mama's horse" and kept talking to her and signing "mama's horse".  The whole time Taksi was smelling Cora and looking at her with his gentle eyes.  jAll of a sudden Cora started to wave her arm and out of  nowhere, clear as a bell, she says, "HI"!

I looked at Emily and Emily looked at me and we started laughing.  Cora had just verbalized another word.  "HI".  Cora verbalized the same word two more times while waving her arm at Taksi.  It was music to our ears and Taksi gets all the credit for this new milestone. 

It was indeed a beautiful day at our indoor arena.  We hope your day was just as beautiful...

Wednesday, April 18, 2012

The Bundle Fable

There was an old woman who was on her death bed.  She grew weary of hearing her children bicker with each other and seeing the struggles they each faced were heart wrenching.  She called to her eldest daughter and asked her to go outside and get the bundle of sticks used for the fire.  The daughter returned and the old woman asked each of her children to try and break the bundle of sticks.  the four children tried and tried and could not break the bundle.  The old woman then asked each child to take a single stick out of the bundle and try to break the stick.  Each child again did as the mother asked and were successful in breaking their stick.  The old woman then looked at each child and said, "Do you understand what I am showing you?".

I thought this was important to share with Cora's readers today.  I spent the day thinking about the struggles that Cora overcomes everyday.  I also thought of the successes that she has proudly achieved.  The train of thought then followed along the tracks of her journey and at every depot there was someone who was standing in support of her and I, waiting for us to disembark from that train and willing to shelter us in support: emotionally, physically and spiritually.

On this journey of Down syndrome and raising Cora it is so essential that when I feel overwhelmed by it all, when I see Cora struggle with her health or physical trials, that I remember we are surrounded by a bundle of supporters.  Cora has the ability to greet these individuals with smiles no matter what the day has brought her, I sometimes greet them with tears in my eyes.  Doesn't matter, for this bundle of people that surround Cora are very strong.  I am ever grateful for all of you.  Because in this alone I would surely break as easily as a stick will under all the pressure.  We all make the choice to be a stick or a part of the bundle.  Any parent who tells you they can be the stick and raise a child with Down syndrome is telling a fable of their own.  It definately takes the bundle!

You do understand what I am trying to tell you today....right?  Blessings to you who are in the bundle of Cora's journey.

Sunday, April 15, 2012

If your happy and you know it......

Clap your hands!  Cora has figured out how to clap her hands.  Since she realized this will illicit a joyful noise and happy claps from those who see her do it, she has spend the majority of her time clapping her hands. 

Friday was the magic day for this new milestone to appear.  I had to take Cora to Petoskey for another hearing test.  While there Robin the audiologist asked Dayna to help distract Cora.  Robin put the ear piece into Cora's left ear and Dayna blew bubbles in front of her.  Cora was so happy to see the bubbles that she lifted her hands up and clapped.  Like she had been clapping for months, as simple as that.  Clap!  Clap!  Clap!  It was music to my ears.

The testing took awhile since Cora's left ear was not responding to the test, but this didn't bother Cora because she was totally engrossed in the bubbles appearing from the bubble wand and floating in front of her.  Finally the test was over and Cora passed on both ears.  This in itself is a miracle as Cora was born deaf and didn't pass her first couple of hearing tests.

A magical day indeed.  A passedt hearing test and a clapping Cora.  If your happy and you know it clap your hands....and Cora will keep clapping right along with you.

Tuesday, April 10, 2012

That which is broken

I found myself in the company of a book over the weekend.  This book is written by a parent of a son with Down syndrome.  Her son is grown and in his thirties and she decided to write a book to parents from a parent.  While I find a lot of helpful information in this book, I have also found some information that I don't agree with or that just doesn't pertain to my and Cora's journey.  This is with any good book.  There are parts you like and feel and parts that you walk away from.

In one part of the book she says that her son is broken to other people but to her she sees a whole person.  To her he is not broken.  I feel like that might not be a good thing.  Let me explain....

I have been approached by people  when I have Cora in my arms and when they are confronted with the fact that Cora was born with Down syndrome they are sometimes (more often than not) apologetic about this.  Like I somehow ended up with the wrong Christmas present or I was somehow given a  goldfish instead of the puppy that everyone else gets.  Or I received a gift that malfunctions, one that is broken.

Cora is not a child that was born and then broke.  She was born broken.  What an absolute blessing for her.  What?! Keep hanging in there....

Do you remember the bible story from when we were children and it talks about the Fishes and the Loaves of Bread?  The one where the disciples took the basket from the little boy and fed the masses with a few loaves of bread and a few fish.  There were over 4000 people in that crowd and every one of them were fed and left with the feeling of self-empowerment for having heard Jesus' talk and share his view of life with them.  Many of those people were broken.  Many of them were broken to the point of feeling as though they could not be broken further.  Many of them were at the end of their rope, their personal bottom,  BROKEN.  Yet, when the bread was broken it gave blessings.  Because it was willing to be broken so that others could be blessed.

If your not willing to be broken then you cannot be blessed.  Some of the greatest people have been incredibly broken at some point in their life.  How wonderful it is that Cora was born broken!   To think that she was willing to be born broken, to be born with Down syndrome so that she could be blessed and bless others....what a huge gift for those that know her.  Because I don't know many people who would honestly say they are willing to be broken so that a blessing can be received.  In my eyes, that makes her pretty honorable and special...in a blessed way.

Friday, April 6, 2012

Cora's Doctor Visit Lesson

Good news.  It was a growth spurt last week when Cora had that huge weight gain.  Such a great relief for both myself and Catherine at Pickford Medical.  Cora gained a normal amount for her in the past week.  She gained 4 ounces.  This brings her weight to 14 pounds and 12 ounces.  She also grew another bit and her length measured at 27 inches.  She is truly getting to be a big girl in a good way.

Catherine and I both sighed a breath of relief when we looked at the scale and it showed the simple 4 ounces weight gain.  I grabbed Cora from the scale and gave her the biggest hug and this week when I walked down the hallway, there was only smiles and pleasant thoughts.   Just to be on the safe side, Catherine did a thorough exam of Cora and declared that Cora indeed looked great and lungs and heart were sounding clear.  Catherine listens to Cora's heart by holding her in her arms and putting the stethoscope on Cora' back.  This enables her to keep Cora from squirming, but it also lets Catherine snuggle with Cora.  Something they both enjoy.  When Catherine went to hand Cora back to me, Cora turned around in her arms and grabbed a hold of Catherine's collar of her lab coat.  Cora was NOT done with the snuggle time and Catherine just laughed and snuggled her for a little while longer.

 Cora has a great "people radar" and I have learned to watch for her reaction to people.  She has a way of letting you know if the person she is encountering has a good vibe or a negative vibe.  She is interactive with those she deems as "good energy" and will just stare blankly at others she deems as "negative".  It is a lesson in seeing people for who they are and not how they appear.  When Cora decides you are accepting of her and give a good vibe, she often makes it hard to stop the snuggle time.

For me, it is a gentle acknowledgement that Cora is not only teaching me, but others around her.  Such a wondrous child she is, to be teaching those so many years older than her.  One would think that with age comes wisdom, but somehow, I think in Cora's case, the wisdom was born with her and she is passing it on to us.

At a time of year when religions are reminding us of the resurrection of Jesus and the reason for the Easter holiday...Cora is doing some of that resurrecting of her own.  She continues to resurrect the desire to learn and serve better for those that are involved in her medical care.  She continues to resurrect the feeling of youth in those that work in her therapies.  For me, she resurrects my laughter and optimism that has accompanied all my life.  It was lost to me for some years now....she is enabling me to find the intense ability to again look for the positive side of very dire situations. 

A great teacher this little button is becoming.  I only hope I can continue to be a good student in this journey of life I share with her.

Tuesday, April 3, 2012

Cora teaches mama

Early on came and loaded me down with books and information today.  It was a speech therapy session for Cora, yet I found myself learning as well.  Funny how that seems to be the result lately. 

Ann brought many things today to help with Cora's learning, but they definitely filled in many of the "blank areas" for me as well.  Along with books she brought Cora a really neat mesh thingy (yes, thingy is a real word!) that allows me to put a piece of teething biscuit inside of it without the fear of Cora choking.  This new gadget will allow Cora to continue to practice her chewing skills and also encourage her to try to keep an item in her mouth once she has it there.  Cora still lacks the coordination to bring her own hand to her mouth, but this little gadget seems to already be helping with that.

The books that Ann brought are interesting and scary.  Just when I think I have heard everything, I am given a book that tells about more problems that Cora might encounter along this journey.  The good news is, the book also tells about the blessings and achievements that Cora has to look forward to as well.

We are all learning more sign each day and Cora is recognizing these more readily.  While she understands the spoken word, the sign seems to help incorporate the meaning for her.  Yesterday while Kelsey was working with her horse in the arena, Cora and I were watching from the gate.  Cora was watching intensely and following the movements of both horse and handler.  When she looked at me  I said and signed, " Sister is teacher of her horse.  Do you see sister?"  With that Cora nodded her head "yes" and looked back to the arena.  It is moments like these that I wish I could freeze in time and keep with me.

Later on I brought it my horse and took him near the stroller to see Cora.  Cora's eyes were huge (her first real face-to-face encounter with a horse) and she got the biggest smile on her face.  I signed and said "mama's horse".  I did this several times and kept signing and repeating the sentence.  During this time Cora was watching my horse with interest as he smelled the stroller and her.  When it got to the point that my horse started to smell the top of her head Cora looked at me and signed "all done".   I am so proud of Cora and her communication skills.  While she is still limited on the use of her signs, she definitely knows how to get her point across.

Cora continues to learn and I continue to learn right along with her.  I can think of nothing better that the realization that the baby I thought was going to have such difficulties as a student of life,  is actually becoming my greatest teacher.



Sunday, April 1, 2012

Accepting Life

Cora's had a doctor's visit on Friday.  Despite the fact that she has packed on 12 ounces in the last 6 days, there doesn't seem to be any fluid in her lungs and she doesn't appear to be terribly bloated.  Pickford Medical and I decided we would count it as a growth spurt instead of fearing that it was a huge weight gain indicating the start of heart failure.

The fear of Cora's heart failure is always going to be there, I think.  The ever watchful eye for the sign and indications that the leaking and regurging repair has started to let go again.  I try to deny this fear, even push it aside when I feel it starting to choke me and making my heart beat faster.

But on Friday I could  feel that panic set in as I looked at the scale at saw that huge jump in weight gain and that protective mother instinct start to come over me as I take her off the scale and hold her close.  My mind races and I tell myself its just a growth spurt, its not heart failure. 

My memory flings me back to the morning when I found her lifeless in the crib and pale as a porcelain doll.  I remember how I tried to wake her and she didn't respond, the sobbing and choking fear that I had lost my youngest child.  The sickening relief when she finally responded and the rush to vomit in the toilet instead of on the floor by the crib.

I found it surprising and alarming that as I walked with Cora snuggled in my arms back to the exam room, that the morning of her "not waking" should flash back into my moment of silent walk down the hall.   The inside of me feels sick and my mind is rushing, but my mouth still asks the questions and smiles.  I sometimes wonder if my eyes tell of the fear and the panic that I feel?  Can others tell at that moment what I am really thinking and feeling?  Can they feel the emotion of wondering if I am again loosing this beautiful child?

Maybe not...for Catherine continued to talk with me and tell me that she found nothing alarming in Cora's exam.  She said that the huge weight gain could merely be a growth spurt and that "little Cora" is merely  making leaps too catch up with the growth charts.  Then Catherine tells me that if the weight gain is still huge next week we will do blood work to see if her heart is not functioning as well as it was.  Yep, there it was.  That cautionary tone and suggestion.....maybe I wasnt' hiding it as well as I thought.

Friday left me with enthusiasm and fear. Today is Sunday and I still feel that lingering caution in the pit of my stomach. When Cora finally woke up this morning it was almost 10am, and for Cora, sleep and naps are an indication that something is amiss.  I felt the dread start to choke me and then slowly leave my body as I watched this chortling baby and felt her tight grasp on my hand as I changed her diaper. Cora was all about wrestling and playing this morning when it came to getting out of her pajamas and getting ready for the day.  I felt the concern take a back seat to the joy of the moment. It was a welcome relief.

I find that in the past year with Cora I have learned to become more optimistic than I normally am  while not putting on or wearing the rose colored glasses.  I think, despite it all, part of this journey is learning to accept everything on it.....even when that sometimes means accepting the scary sh#*!  For that is life and life is sometimes scary.  Learning to Accept Life as it is handed to us is half the battle.  The rest just kinds of falls into place, and I trust in that knowledge and find it useful on this journey with Cora.