April 22, 2016

Lucky enough for for a better plan

Many years ago I had purchased 4 matching Easter Baskets, 4 matching Christmas Stockings, and 4 matching baby pictures frames that would one day belong to my 4 healthy, beautiful, thoughtful, never a snotty nose children. Well, as you probably have guessed, I quickly learned that motherhood is a humbling process and sometimes no matter how hard you try or how much you plan, you just can’t always keep noses wiped, rooms perfectly clean, and everyone happy all the time.  In fact, somedays, you just might glue that baby bow to your child’s bald little head and it just might restick itself to you without you knowing it until the Costco employee asks if you were aware of the “bow tie" on your chin.”  My 3 beautiful kids had humbled me and taught me that my plan was not always the actual plan.  Usually the actual plan was way better than my plan! 

So, you would think I would have been more prepared when our 4th child was born. Approximately 5 years ago, the day had finally arrived for our 20 week ultrasound.  We were excited to learn if we were having a baby boy or girl, because in my mind that was the purpose of that ultasound.  We were excited to learn we were having a beautiful baby girl...but we sensed there was something that the ultrasound tech wasn’t telling us.  After much prodding and questioning from us with no answers, she let us know that if there were any concerns the doctor would be in touch.  Days later, as I was driving through the Walmart parking lot my phone rang.  The doctor informed me that our baby girl might have 1 of 3 different health concerns. I pulled the car over. The world stood still for a minute. The medical names were all so long that I couldn’t tell where one possible diagnoses ended and another one started.  We would have a follow up ultra sound with the doctor, as well as be sent to the neonatal specialist.  Our family and extended family fasted and prayed.  During that time I felt peace that no matter what we were told our Heavenly Father had a plan. I couldn’t wait to learn more about our baby girl. Imagine our relief when we met with the specialists that informed us that there must have been a mistake with the first ultrasound and that we would be having a healthy baby girl.  As I felt incredible relief in what they were telling me, something very quietly whispered to trust in that peace that all was well, but that it maybe was not as simple as what the doctor was saying. I put those thoughts behind me and continued to get excited about welcoming our baby girl.  

On August 5th our baby girl was born 3 weeks early!  She had the cutest chubby little cheeks and tiny fingers and toes.  The nurse commented on the slants in her eyes.  They whisked her away and quickly started feeding her a bottle.  I thought this was a little unusual, but was just anxious to hold our baby.  After we were brought to our room, I remember the lactation consultant paying us extra attention! (Little did we know that the entire nursing staff knew our baby girl had Down Syndrome, but they were waiting for the doctor to tell us.)  So as the lactation consultant was paying extra attention to us and was so impressed with my daughters eating skills, I was convinced it was just because I was a 3-time-returning nursing-pro  and we were rocking it so well that she wanted to watch and take notes on our feeding skills…I was patting myself on the back in all my pride.   In reality, she knew that my baby girl had very low muscle tone and a mouth that was structured in a way that would likely make it difficult for her to nurse or eat.  My daughter looked like she was eating like a champ, but in reality we would end up back in the hospital after being discharged because she was not eating sufficiently.    

That evening, hours after her birth, our baby's doctor came to our room.  As soon as the doctor walked in, my husband asked a question that I did not expect.  He said, “Does she look like she has Down Syndrome.” I was almost embarrassed that he would ask such a thing.  That was not part of my plan so why would he ask a question that would reroute my plan? The doctor responded, “I think she does.” For about 2 seconds all I could think about was that I just wanted to eat my chicken teriyaki they had just brought me. It is funny what your mind does with information that is “plan-changing.” After a few seconds, it hit me.  My world stopped again. I cried.  I questioned. I dried my eyes. I forced a smile through my concerns because within minutes our kids and parents were knocking on the door to meet their new baby sister.  My mind was swirling. I knew NOTHING about Down Syndrome. That was not one of the long words the doctor had told me in the Walmart parking lot.  In fact, ironically he had said “Your baby does NOT have Down Syndrome.”  So, after my kids left I called my obstetrician thinking if he could find that 2nd ultrasound that he could take us all back to that world where my baby was going to be a typical child by doctors definition.  As I said, my mind was doing funny things.  

I was anxious to be alone that night in my hospital room with just me, my baby, my thoughts, my fears, my tears, my questions, and ultimately my Heavenly Father in prayer.  I needed to understand what was happening to my plan.  He just let me feel.  To my suprise.....I felt peace.  I felt excitement.  I felt strong. I felt blessed.  I felt love.  I felt loved.  I felt that his plan was so much greater and eternal than I could even fully understand. I remembered that whisper that had been there after the ultra sound telling me that my baby girl was stronger than those doctors knew. I remembered experiences I had been given to prepare me for this moment.  I saw a picture in my mind of the people he had specifically brought into my life that were in a circle around me.  I was in the center and their strength was keeping me up and showing me how to be strong.  I knew that night that His plan was so much more complex and beautiful than anything I could have planned on my own and that my baby girl was a blessing that would teach our family more than we could imagine!  

Rylee has taught us faith! When our doctor came in the next day to speak with us I drilled him with questions. Like I said, I knew NOTHING! Will she be happy? What will school look like for her?  Would she have friends? Will she speak clearly? Would she live a long life? The list of questions went on and on.  Some of the questions have answers. Many did not. I quickly realized that many of the questions I was asking for Rylee, I did not know exact answers for my other 3 children.  The only real constant in our life is that we have a Heavenly Father that loves us and has an eternal plan. The details of our lives can surprise us, but I am continually learning faith that through the surprises His plan will bring us the peace and happiness in ways we maybe would not have imagined. 

Rylee teaches us that we all have strengths and weaknesses waiting to be developed and shared with others.

Rylee teaches us about love. It truly takes a village and we love our village! 

Rylee teaches us to celebrate life's little moments and milestones. 
(Photo credit: Ashki Photography)

Rylee teaches us that the unexpected "plan" may be more complex and beautiful than we could have imagined.  

Rylee teaches us the strength that comes through service. Anyone is welcome to join in with us as we partner with Rods Racing, "Racing for Orphans With Down Syndrome!" http://movetomakeadifference.com/events/  or rodsracing.org

Rylee teaches us about patience. 

Rylee teaches us that true beauty and intelligence leaves a mark for good on the world. 

She teaches us how to be flexible. 

About a year after Rylee was born a friend who was pregnant told me that she could see herself being, “unlucky” enough to have a baby with Down Syndrome.  Since then, I have wanted the world to know that my daughter’s diagnosis does not change the fact that I am not just lucky, but blessed beyond measure to have this “stellar spirit” and beautiful girl in our home.  I am forever thankful that she was part of the unexpected plan for our family! 

(Photo credit: Ashki Photography)

Related articles on parenthood: The Coat


ScottJ said...

An amazing story...Thank you so much for sharing it with us!

Becca said...

Having a daughter myself with special needs. Every single word spoke to my soul. We really are the lucky ones. Thanks so me in for sharing she is a light and so beyond adorable.

RaeAnn said...

Thank you for sharing! It made me cry to think of the unexpected, and uncertainty that kind of hit y'all full-force one exhausting night. You are lucky to have her, and she is lucky to have you.

Unknown said...

Thank you for sharing. This is exactly what I needed to read today. I am 16 weeks pregnant and recently found out that our little boy has down syndrome. This was not in my plans. It has been a little hard because I just don't know what to expect. Your story was wonderful.

Unknown said...
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Unknown said...

Oh Aubrey! You are one of my dearest friends and I can remember adorable little Riley coming into this world with such an angelic spirit, that I knew she would forever enhance your life. You and Mike are wonderful parents who have provided so much for all your children. Your family is a sample of heaven here on the earth! Love you so much! Heather Ogden

Lessa said...

Your sweet Rylee looks like pure sunshine. I couldn't help but smile liking at her pictures.

Click said...

I loved this video. I have a question as I am not very familiar with Down Syndrome. Are there level of DS? Rylee doesnt look severe like some others. In lots of those pictures I could not see any evidence of DS...and some you can. She is adorable!!! What a special spirit. I LOVE when I see stories where parents realize their blessings with these amazing kiddos! I often lose sight of the wonderful blessings my 5 kids are.

Aubrey said...

Thank you Becca!!❤️

Aubrey said...

Thank you, friend! ❤️

Aubrey said...

Congrats Allyson!! 👏🏻💙 I don't know where you live but feel free to contact me if you ever have any questions or want someone to talk to.

Aubrey said...

Love ya lots Heather!!! ❤️ Can't wait to get the Ogdens back in Idaho!!🎉

Aubrey said...

Thank you Lessa!!! 😊

Aubrey said...

That is a great question! Here is a non scientific answer. 😊 There are different types of Down Syndrome. Rylee has "traditional" Down Syndrome, according to her genetic testing. I have had people ask me if she has " mosaic Down Syndrome" which means that all of the cells do not contain the extra chromosome. The effects of mosaic DS differ depending on which cells have the extra chromosome. Regardless of the type of DS, just like all kids, they come with different strengths and struggles. For example some kids have have sensory disorders. Some kids have heart defects. It varies from kid to kid. Hope that helps answer your questions from a moms point of view. 😊 Thanks for your thoughtful questions!!!❤️

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