Sunday, April 13, 2014

Avyn



    I have dreaded writing this blog post for so many, many reasons.   However, I have put it off long enough, and it is time for me to speak about the season of life that my family is currently walking through.   As a gardener, I am well aware of the seasons.   I know that we endure the cold and bitter seasons, and eventually they pass and we can enjoy the beauty of the warmer, easier seasons.    I also know that without the hard seasons we cannot fully appreciate the joy that springtime brings.   And so, I begin to share Avyn's story. 

      Avyn was born at home on September 2, 2013.   Sy and I were alone in our bedroom when Avyn made his hasty appearance.   It all happened so quickly that it was mostly a blur of excitement.   However, when everything settled down, Avyn nursed heartily and all seemed normal.     The next few days were pure bliss for me.  I enjoyed being forced to rest, and for once in my life, I was completely content to do nothing but care for my new baby.   After a few weeks, I began to return to my tasks with a new baby attached to me. He was a very pleasant baby with a laid back personality and easy demeanor, and so I was not concerned about him until he was about 2 months old.   It was then that I began wondering why he was not moving as strongly as my other babies did.   His grasp, his cough, and his strength all seemed weak. I kept putting my concerns aside. He was full of joy and plump as can be. Perhaps he was just a bit fat and lazy.   

   
  Around 3 months, I realized that he was not yet lifting his head on his own. He could hold his head up and seemed to be progressing well, but he could not lift his head up off the mat when he was on his belly.  I decided to contact Early Intervention and begin physical therapy to help him develop.   They came to the house and reassured me that with some extra attention his muscle tone would improve, and he would be fine.   


    Christmas came and went and in early January my children all caught the RSV virus.    While my other kids coughed, hacked and got better; Avyn struggled more each day.  We ended up taking him to the emergency room and then to the PICU. He recovered very well from the virus, but the doctors were concerned about his lack of muscle tone. They began testing, and he was seen by a neurologist.   I began to realize at this time that maybe something was very wrong.  I thought perhaps he would be slow or disabled, but could not even fathom something worse.   One doctor mentioned something called Spinal Muscular Atrophy, and I began to panic.  However, I still was not ready to accept that something was seriously wrong with my sweet baby.  One evening in the hospital, Sy and I decided to google more information about each of the diseases we had heard the doctors mention.  We read about a few that did not seem to describe him completely.  Then we began to read about Spinal Muscular Atrophy and with a sinking nauseous feeling in my gut, I realized the information was very accurately describing Avyn.  I cried and I cried as I discovered more about this horrible genetic disease that has no treatment or cure.  I began to understand that this disease would steal my baby’s strength bit by bit, and eventually he would no longer be able to breathe.  I read that this disease is the most common genetic killer of all babies under the age of 2, and Avyn would more than likely not make it to his first birthday.  
      We left the hospital a few days later, mostly stunned and completely overloaded with information.   Something in me still held hope that maybe there was a misdiagnosis.   However, one cold, snowy day in January, I received the call that confirmed my fears.  Avyn’s bloodwork had returned, and he did test positive for Spinal Muscular Atrophy (type 1).  I spent the next few weeks shocked and depressed.  Life seemed an impossible task.   My worst fear and scariest nightmare had thrown themselves at me and knocked me flat on my back.   Eventually, however, I began to realize that each moment we have with Avyn is sacred, and we needed to move on with life and enjoy each second with him.   He has a smile that can warm even the coldest hour, and I was missing it while focusing on our hardships.   So, I stood back up, took a deep breath, and began to live again.

     We had worked all fall on converting a school bus into an RV, and we wanted to travel a bit this winter with our bus.   We returned to this plan, with renewed energy and heavy hearts.   Somehow for my family, hopping into a school bus and driving around the United States is comforting and normal.    We visited family, saw new places, and filled our days with new memories.   Avyn met 2 new cousins, one just a few days older than himself.  He put his toes in the water of the Atlantic Ocean and climbed the Ozark Mountains.   He sat around a campfire, played in the snow and felt the love of 10 second cousins on a small farm in Ohio.   It was a healing trip for all of us, but Avyn only knew he was having a blast with his family.    

    We have since returned to Virginia.   I am trying to just live our normal lives once again, remembering to treasure every moment.   Today, Avyn is well.  He is breathing and nursing fine, it is just more work for him than other children.   He will probably never hold his head up or sit up by himself, but he has an awesome smile.   He spends his days playing with his sisters, hearing music, and taking walks.  He loves stories and clapping games.  I give him a bath and massage every day and he enjoys the ability to move in the water when his body is weightless.  We are extra careful to keep him from getting sick, but otherwise try to treat him just as we would our other children.  
     In every situation, no matter how bad, there is always some good that can be found.   I struggled to see any positives here, but eventually I did find some.   Avyn is in no pain.  This disease has a hold of his body, but not his spirit.  He is joyful and greets us with smiles all day long.  He is happy with his life and has only known complete love from everyone around him.    We are devastated, but he is simply having a wonderful time.  Our family has grown in many ways.  We treasure each other more, and spend more time loving each other.  No longer is life taken for granted and every day is a new blessing.   I feel we will all be more compassionate, gentle and understanding humans as a result of this trial.   Avyn has taught every one of us so much, and I know he is not finished yet.   We are all so blessed to be given the chance to walk down this road of life with him. 



 “It is not death that a man should fear, but he should fear never beginning to live.”   Marcus Aurelius

16 comments:

Anna M. Branner said...

Though holding sad news this is a beautiful, loving, gracious and insightful post. I was so happy to see Avyn on Saturday. His gorgeous smile just glows with joy and I know all of you are appreciating every moment as you should. What a gift he is!

Ellyn said...

Beautiful post Rachael, thank you. He is blessing my life with his joyful smile.

Mosquito Creek Farm said...

We are so blessed to have meet him. Thank you for coming to see us, it makes it even more relevant having been able to hold Avyn and hear his sweet voice.

Thank you too Rachael for posting this. I appreciate your courage so much. You are a continuous inspiration with your example of gracious calm in the midst of a storm.
All our love, those 10 second cousins!

anna mae said...

Thank you for sharing your story in such a beautiful positive way ! Iwill share this on my wall so that it can be an inspiration to others to stay positive and see the good in a sad situation.

Joy said...

I came to your blogpost through Ginny's post on Facebook. Interestingly, I don't usually click through unless I know the person whose story is posted. My children go to a wonderful arts-based charter school, and we've gotten to many amazing families through this school. My youngest (7) has a little girl in his class with SMA. I think she has the rare form which is slower moving. She is the light of the classroom. Last year at Valentine's Day, my little guy made her Valentine twice as large as the others because "she has the biggest heart, Mom". I'm sorry to hear of this news for your family, but I'm glad to hear you're enjoying his big heart as well.

Hullabaloo Homestead said...

You are amazing. I found you via Ginny Foreman...and your lessons learned are SO powerful and deep and strong. Your family is beautiful. May your days be treasured indeed. Thank you for being storing enough to share your story. I will be praying for you and your beautiful baby boy.

:)Lisa

Tricia Gaitan said...

What an amazing blessing in Avin! A smile to end all sadness and you get to see it all day. YOu have blessed me with your story. Thank you so much for sharing your story. I will be praying for your family.

Jackie testa-jerndal said...

Thank you so much for sharing this beautiful post which I am reading with tears streaming down my face. Avyn is pure unconditional love, joy and pure bliss, what a blessing that you are able to take this journey with such incredible insight. I know the pain must ride right along with it. I cant imagine. We love you all and wish nothing but love peace and understanding to all of you through this. Thanks again for sharing. hugs to all of you.

jim said...

A wonderful sharing, Rachel, truly a shock and yet a clear, simple lifting for us hearing it for the first time. Courage, guidance, and protection to you all. I am so saddened by this.

Erin Cunningham said...

So beautifully written, thank you for sharing. He is so precious, hope to catch up with you guys sometime this summer. Best wishes to you all!

Elizabeth said...

You are both amazing parents and you have a glorious family. I cannot begin to imagine what you are going through but the awesome grace that you have projected here in this post is awe inspiring. We all need to treasure each moment you have been given a gift in that you know with certainty that you must do so!! he is such a beautiful little guy!! I look forward to seeing you all soon!!Thank you for sharing your story and your sweet baby with the world. peace.

Merry said...

Blessings to you all on this journey. All my love to you!

Roy said...

God bless you all! i seen Ayin today, very cute little puddin. Watched your husband chopping out one of the bowls. He is so gifted.

Debbie W said...

Thank you, Rachael, for sharing Ayvn's story. You are right, his smile is adorable!! He has had some amazing adventures for a person of any age!!! I believe the quote at the end is so true. It's key and I think God wants each of us to live this way.

CLR said...

Rachael, I was so thankful to have seen your family once again at the farmers market today. Thank you for speaking with me. Your Avyn is so full of joy and loved by his family. He has the most beautiful smile. We will be asking for the Lords comfort for your precious family.

Anonymous said...

Avyn's smile never failed to warm my heart; your love for him and your care for him inspire me to face trying times with hope and love. I remember him often, when I see you smile, when your children laugh and run barefoot in the yard. As with you all he has marked my life in ways that I could never express.

Tim