Sunday rolls on

Cora spent the day traveling along the floor, pulling dvd's off the bottom shelf of a bookcase and staring anyone down who was eating.  Her antics brought me such joy that at one point tears filled my eyes.  I was filled with such love and understanding for this child.  I watched her roll this way and that way.  I saw her reach up, grab a dvd and put both hands on the dvd to look at the colors of the case.  I could see the concentration in her eyes and the determination in the direction of her rolls.  She was totally engrossed in whatever had caught her curiosity and gave her the next direction of her rolling to discover what it was that had needed her discovery.

At one point I was so tickled with her abilities that I clapped my hands and told her how proud of her I was and just laughed at the look on her face.  Cora gave me the biggest smile and a little "hoot hoot" a bunch of happy leg kicks and her blue eyes just sparkled with her laughter.

It brought me to tears for the simple fact that she, in these moments today, was exactly like my other children.  She wasn't an infant with Down syndrome.  She wasn't an infant with special needs.  There was nothing different about Cora than any of my other children.  She was a ten month old baby who was enthralled with her world and determined to explore everything she could get too.  Normal??  Yep.  Average??  Yep. 

I am reminded so often (by others) that Cora has Down syndrome and what I need to do or not to do for her and her care and her well being.  I am always aware of her needs, whether it be subconsciously or consciously.  Today I was gifted with a time of normalcy and no reminders.  Today I was gifted with an absolutely astounding normal moment.  That, my friends, is what brought tears to my eyes and filled my heart with overflowing gratitude.  The sparkling blue eyes were an added bonus.

 

Women time

Cora  had lunch with the women today.  She is usually the topic of conversation, but today she was just chillin' in Auntie Lee's arms.  And stayed there for the entire lunch because once Auntie got a hold of her she didn't want to share.

What a blessing for me!  I got to eat my lunch and had desert.  What a blessing for Cora!  She got to spend time with some of her greatest supporters on this journey of hers.  She had lunch time with Auntie Lee, Auntie Kim, GG and mama.  That's pretty good company I think...

I am continually amazed by this baby girl and her ability to adapt and grow.  She was eating bread (with dressing on it) and egg yolks and a had a few bites of cheesecake for desert.  She was keeping it all in her mouth and chewing like a pro.  For me it is so rewarding to see her one day not able to do something, and the next day doing it like she has been for days.  Cora even accomplished sucking from the straw and holding the straw in her mouth.  Once she realized we found it humorous to see the straw sticking out of her mouth she was game to try again and again.

The blessing in lunch today was to witness the softness and love that Cora offers to another woman...without expecting anything in return.  It is like Cora has a sixth sense  and knows when a woman is needing a hug and cuddles.  I am told that she has a way of calming the soul when you hold her and making one feel peaceful.  I have often felt this when holding Cora but have attributed it to a mother's love and bond.   To hear my "heart sisters" tell me that they feel this same gift from Cora that I feel is such a wonderful knowing for me.

 Auntie giving Cora a straw using lesson.

It reassures me that the path we travel is the chosen one.  Now we just have to keep from stumbling along the way.

 Cora after lunch with the women.

Cora teaches again

Yesterday Cora and I traveled to Charlevoix, Mi to see Dr. Statler. Dr. Statler has been practicing there at a new pediatrics office and I was so releived that Cora and I could go there and see her. We haven't seen the good doctor since her goodbye dinner at Applebees . Some of Cora's latest colorings have worried me a little bit and it was reassuring to have Dr. Statler look at Cora and tell me that its all okay.

While Cora's hands are turning purple with any extensive exercise, her well being and overall happiness is at a high. The swelling in her hands and feet come and go depending on how much she is rolling around and playing, yet she babbles away and continues on her mission to reach whatever toy has captured her attention.

When being weighed yesterday the scale showed that Cora has gained another ounce. Yeah for her! Dr. Statler and I both looked at each other and smiled a huge chest-ire cat smile and she said, “An ounce in the right direction, we'll take it!”. I agreed whole heartily.

The four hour trip leaves time for reflection while I am driving, and a time of rest for Cora. The truck is quiet, the baby babbles softly and blows raspberries and music plays quietly in the background. The sun shines in the windshield and warms the truck on a cold winter day and the roads were clear. Reflection is an easy thing when the day is quiet and the truck is filled with a babies quiet snores. I started thinking about my and Cora's travels and this journey we are on. Traveling the two hours to see a pediatrician to some parents would seem ridiculous. For me, it is a necessity to Cora's overall health and well being. This is not something I would have considered doing if you had asked me before Cora was conceived. I probably would have looked at you funny and said “No way, would I travel four hours to take my child to a doctor just for a check up.” But travel four hours is just what I did yesterday and I did it for my child. Why? Because Cora needs to be with a doctor who has traveled this journey with us since the first week of Cora's life. A doctor who knows my child as well as I do and who can tell , just by looking at her and holding her, how well Cora is or isn't doing.

Cora is worth the time and she makes these moments of quiet a welcome gift for her chauffeur. Quiet leads to peace and in that moment of reflection I again understood what this child has given to me and to others. Some label her as a special needs infant or just a baby with Down syndrome, one with a heart defect that has jetting sutures. Some see her as a patient number and miss out on the wonderful gift she has to offer.

For, when I look into her eyes I see abundant good, awesome joy, heartfelt peace and open love. I see myself in her eyes and I am thankful for this quiet reflective moment she has been able to offer me. A moment I might have missed if I had not chosen to take this journey with Cora Jean. I've said it before in this blog, and I am gonna say it again...thank God she is sharing her gift with me and that I am still young enough to learn from a child.

Double Take

I make it a habit to look in the mirror each morning and greet the day by looking into my eyes and telling myself that I am a beautiful and phenomenal woman.  I tell myself that I am going to help someone today and give what I can of this love that I have inside of me because I am a lovable person and a lovely woman.

Today, while I was working on paperwork, Cora worked her way to the closet mirror and proceeded to gab quite a bit with the baby she found there.  She was all smiles , and cute looks and baby babble.

I watched her and I thought "how wonderful that she finds herself so cute".  I started talking to her and telling her that the baby she was looking at was beautiful and wonderful and smart and loving.  I told her that the baby in the mirror was Cora and Cora is an amazing child that will grow into an amazing woman.  I told her to listen to the baby in the mirror when the world tells her different, because that baby in the mirror is her gift to herself.

Can you look yourself in the eyes in your mirror?  Can you smile and babble cute talk to yourself?
If not, you are missing out on a great blessing.  One that you can give to yourself.  A blessing that no one can take from you and no one else can give to you.

Let Cora give you that gift as she smiles at herself.  Maybe you can even give yourself a little kiss like Cora did to her mirror image.  Because there is no one else like you in the world, and God blessed you with his awesomeness.

No problem is permanent

I was reading in a book today that Colonel Sanders (the Kentucky Fried Chicken Guru) tried 1,009 times to get a yes before he was finally seen as a food genius instead of a funny man dressed in that white suit selling bites of chicken.  Did you know that Walt Disney was turned down 302 times before his dream of creating the worlds happiest place on earth was financed?

Okay, so where is this going?  I think for me it is so important to remember that persistence will have a reward in the end.  That no problem is permanent and even though it affect my life, it will at some point pass. Just like the heart failure and the two surgeries.  Just like anything else Cora will face.  It will present itself, it will be dealt with and it will pass.

I decided that in light of this information and this path of thinking that I was going to focus on giving Cora foods that would increase her weight instead of focusing on the "why" of her losing weight.  She is happy, playful, signing words, babbling baby talk, and just plain enjoying life.  She is full of cuddles and really starting to laugh.  She has even started this cute little "hoo hoo"sound.  She has one "hoo hoo" for happy and one "hoo hoo" for upset. 

I again remind myself to be grateful for the wisdom of  mother's before me.  I have been asking the elder women in my community, my family and in general what they would have done for a baby that wasn't gaining weight.  Some of the answers would put the fear in Cora's doctors, but others have been wonderful answers.  I know that at times our science is  not as advanced as the knowledge of  a mother's instinct.  Because of this I have found that Cora loves pumpkin mixed in with her cereal.  And she absolutely LOVES bacon grease....just kidding!

The problem of weight gain is being dealt with and it will pass.  For today, I am grateful for the ounces she has gained instead of focusing on how much she "should" or "needs" to weigh.  Really, in the happiness of her moments and the love she shares, its a small thing.

I wonder if she likes mashed potatoes with sour cream and butter?

Unsuccessful Crib Break

Cora tried to make a run for it during her nap time, but asleep before she was successful.  You gotta love her.  She just does the cutest things. 

 
Her new thing is to rub her feet up and down the crib slats while she listens to her musical giraffe and falls asleep.  It is not uncommon for me to find her like this lately.  Makes me laugh.  It is such a "average, normal" kid thing to do. 

Therapy team arrives

Cora has therapy today and worked her little abdominals really hard.  She likes the idea of sitting up, but doesn't quite have the coordination of sitting up or the muscle tone to do this .  We were shown a way of using her bobby pillow to help her learn how and to help develop those ab muscles that she will be needing for sitting and crawling.

Veronica (black hair) and Sarah (blond hair) both worked with Cora on the exercise.  By the end of the session , about 45 minutes, Cora was trying to sit up by herself.  The Early On Team left very happy with Cora's improvement and success today.

The homework for Cora is to continue sitting in her Bumbo seat, and for her to continue sitting up with the aid of her boppy pillow.  I also need to use a mirror or picture in front of her, on the floor, so she will straighten her arms to lift herself up and be able to look down at the picture.  This will help her learn to straighten her arms and ready her for crawling.  Cora is doing this now but not for a very long time.  By placing the mirror close to her on the play floor she will tend to stay on her straightened arms longer.

After they left Cora drank a full bottle and then napped.  She really deserved that rest.

Oh, and today at her weight check the scale showed a weight gain of 2 ounces.  Now for those of you that have been following the blog, you know how much this means to Cora.  So raise your hands in the air and let out a "WOOT< WOOT" for Cora.  Because I sure did at Pickford Medical did when I saw the scale and it read 12 pounds 14 ounces.  I think there is something to that coconut oil (mct oil).