Down Syndrome 1st Year

Sadness      Worry        Faith        Gratitude     JOY

    Is there a difference between fear and worry?  You see . . . I’m not afraid of facing Ella’s future but I do worry about her future.

 I’m not afraid because I know that my Father in Heaven loves her and loves me and has a beautiful plan for our lives.  I know that He will guide me along the way and do whatever is necessary to stretch me and help me become the person he wants me to be.  

Yet, I worry about some things.  I worry about her speech and if she will be able to communicate with others even though I know that we are a part of the best early intervention program around and that Ella is surrounded by individuals that daily work with her to help her succeed.  I worry about how I am ever going to send her off to school even when I know that our school districts are awesome for students with special needs, that she’ll have good bus drivers, good teachers, and many people that care about her and want to help her develop and learn.    I worry about if she will have any health concerns even though she has been very healthy so far and we have the most amazing and caring doctor out there.  I worry about if she will have friends even when I know that I live in a town with people who are so accepting and considerate of others . . . . a town who is like one big family.   I worry how she is going to feel when high school dances come along, graduation, work, her friends and siblings get married and have children . . . .  . What does her future hold?    I know that I don’t want to limit her but the unlikelihood of her being able to have children just breaks my heart the most.    I don’t know …. maybe it won’t matter to her as much as it will to me.  Maybe by then, my Lord will have filled my heart with understanding and I will be at peace about her life.  But for now, my best way of keeping my hopes up is to take on my worries one at a time.  

For now, we spend time each day working on her speech development, physical strength, and health.  Those other moments will come and I will take them on as they come with faith, strength, and a LOT of prayer.   Looking back on the first year of Ella’s life, my heart is filled with gratitude for her and the JOY that she has brought to our family.  It hasn’t been perfect, though, by any means.  

There are SO many days that Ella is happy and healthy but some days where she has been fussy and sick.  There are SO many times when she never ceases to amaze me at how quickly she is growing, learning, and developing but some times where I’m made starkly aware of the fact that she is behind other children her age, even ones that are younger than her.  There are SO many wonderful people who absolutely love Ella and give us SO much love and support, but occasionally we come across someone that is a little rude or ignorant.  There have been SO many nights that my prayers were full of gratitude and joy but there have been some nights when my prayers were full of tears of frustration or worry.  BUT, ONE THING IS FOR SURE…THERE HASN’T BEEN A SINGLE DAY THAT HAS GONE BY THAT SHE HASN’T MADE ME SMILE, FILLED MY HEART WITH JOY, AND MADE ME FEEL LIKE GIVING HER A MILLION KISSES AND NEVER LETTING HER GO.

My heart has turned to Mrs. Jumbo, Disney's Dumbo's mother, when she sings to her little baby who is teased for having big ears.

“Baby mine, don't you cry.  Baby mine, dry your eyes.  Rest your head, close to my heart, never to part, baby of mine.  Little one, when you play, don't you mind what they say.  Let those eyes sparkle and shine, never a tear, baby of mine.  If they knew sweet little you, they'd end up loving you too.  All of those people who scold you, what they'd give just for the right to hold you.  From your head down to your toes you're not much, goodness knows.  But, you’re so precious to me, sweet as can be, baby of mine.”
  

And an inspiring quote that came from Timothy Mouse.  A MOUSE!  The one thing that the other elephants are known for being afraid of becomes Dumbo’s best friend. When they found out that Dumbo could fly, Timothy Mouse said, “The very things that held you down are going to carry you up, and up, and UP!” 

· Down syndrome is not to be afraid of.

· Ella is the sunshine in my day.

· One day when Ella is soaring we will realize that the very things that held her down will carry her up, up, and UP!  

Happy World Down Syndrome Day!

March 21st is World Down Syndrome day because people with Down syndrome have 3 of the 21st chromosomes.  :)  To celebrate, we wear lots of crazy socks so that people will ask you why and you can raise an awareness of Down syndrome.  I am so grateful that I live in a day and age where people are so loving, caring, and understanding towards people with Down syndrome.  I can hardly believe the support system that is already set up for me to give Ella the best chances.  She has already had help from the following, pediatrician, nutritionist, lactation specialist, audiologist, ENT doctor, cardiologist, hematologist, nurses, physical therapist, speech therapist, Down syndrome foundation president, social workers, teachers, grandparents, aunts, uncles, cousins, great grandparents, great aunts and uncles, friends, etc.  Isn't the list amazing?  I am sure that I have missed somebody too!  Words can hardly express the gratitude that we feel for all of this support!  Ella is one blessed little girl!

How is Ella doing?

I get this question a lot and most people want more than the regular answer of “good” or “great” . . . . . so here it goes.  She is doing absolutely wonderfully!  I just simply can’t explain to you how blessed we feel!  Being born with Down syndrome comes with a large list of health problems that Down syndrome babies tend to have. . . . heart defects, low muscle tone, poor lungs, digestive problems, hearing loss, leukemia, etc.   . . . Ella has none of these!

Here’s how Ella’s doing:

·        - Directly after her birth she had low blood sugar but that was corrected rather quickly with an IV and some food.

·       -  She spent her first 8 days in the NCU because of an infection that was taken care of by antibiotics given to her through the IV.

·     -    She was having blood cell counts that were off and had to have her blood drawn out of her little heals a ton of times.  We were told not to let anyone see her until her counts were back on and we were so glad to get the news last time her blood was drawn that the counts have worked themselves out and we are free to have visitors! 

·      -   They did an echocardiogram on her heart and there are no heart defects.

·       -  She is eating from a bottle wonderfully but has a hard time nursing due to congestion.

·        - She is gaining weight – She now successfully weighs 7 lbs. 6 oz.!  She’s 6 weeks old and still only fits in newborn sized clothes and diapers but that won’t last very much longer.

·         -She sleeps well at night and usually tends to give me 3-5 hour stretches.

·         -She had oxygen as a precautionary measure for the first month and is completely finished with oxygen and is completely monitor and cord free!  That makes it so much easier to take care of her. 

·         -After failing 3 hearing tests, at the hospital, we were sent to an audiologist.  The audiologist did 3 hours worth of tests that Ella was supposed to be well-fed and sleeping through.  Talk about stressful!  Anyway, I shouldn’t have worried because she did so good that we only had to go to the audiologist twice as opposed to most infants it takes 3-5 visits to finish the tests.  We were told that she has mild to moderate hearing loss but that her auditory nerve worked perfectly so it was a sign of a blockage and would most likely be fluid or bones or cartilage.  So then we went to the Ear Nose and Throat doctor and it only took him 30 seconds to tell me that she just had fluid in there and it could be corrected by putting tubes in her ears which is a very common procedure and no big deal!

·         -The Ear Nose and Throat doctor commented several times how her ear canals were a typical size and not small like is expected for a Down syndrome baby.  All of the nurses and doctors have commented on how she doesn’t seem to be a typical Down syndrome baby . . . she is very active and very healthy.

·         -We had a physical therapist come to our home and work with her and he said that her muscle tone and strength is very similar to any infant her age and nothing like most Down syndrome babies deal with.  I told him that all of the nurses have noticed this and that I noticed she was a strong kicker several months ago.  J

·         -Ella gets to be a part of the Up to 3 program at USU but she only qualifies purely because she is Down syndrome because everyone that has come out to our home and tested her and asked me questions about her says that her health and progress are doing too great to qualify for their program.   What great news!

·         -She is a very happy, active, and content baby and is easily soothed! 

·         -I am so in love with her and somehow she can make my heart melt when I have to wake up for the 3^rd time in the middle of the night and her brilliant little eyes sparkle and look up at me from her bassinet. -

-I am loving dressing her up in all of the absolutely adorable outfits, hats, bows, and blankets that everyone has given us!  She is so much fun and I l love being a mom!

Our Sweet Little Angel

I’m not the same person I was two weeks ago.  Two weeks ago today I gave birth to a beautiful baby girl.  We couldn’t have been more excited!  We were totally prepared and ready for her to come.  Nate and I have been married for 4 ½ years.  We both have finished our college degrees and both have steady jobs.  We spent the last couple of years praying about, deciding and finally purchasing 6-acres of land in Newton, Utah.    Our decision was based on where would be the best place to raise a family, where they could learn to work, have great friends and neighbors, be part of a wonderful ward, be close to family and attend a good school.  We got all of the necessary insurance and made sure our finances were all in order to start a family.  We spent months making a perfect little nursery for her, decorated with butterflies, washing and folding every piece of clothing and blanket, and triple checking lists of things that you need for a newborn.  With all of this preparation, none of it prepared me to hear that our sweet little angel would be born with Down syndrome. 

 After 30 hours of labor, my sweet little baby arrived.  I asked the doctor to please bring her straight to my chest when she was born but instead they rushed her over to the warming bed and had three people frantically working with her because she wasn’t making enough noise or responding well at first.  I couldn’t even see her for a few minutes but Nate was standing over there with her.  I heard a few things that were going on and then I heard the nurse say, “There are some flags for Down syndrome.”  The doctor said, “You’d better explain to dad what you are seeing.”  They showed him a few things and then the nurse finally held her up for me to see.  I was in awe of the moment and I told the nurse, “She looks just like me when I was a baby.”  The nurse said that Down syndrome is sometimes hard to tell because she will think the baby has Down syndrome and then look at the family and not know.  I have to admit that I was a little bit angry with the nurse for even saying anything if there was still a huge possibility that she wasn’t Down syndrome.  Finally they let me hold her.  What a beautiful moment!  No matter what anyone said it couldn’t ruin that moment of holding her for the first time there with Nate and our perfect little angel.  In my heart I knew that she was Down syndrome and I knew that I had known for several months but I was definitely still in denial at this time and hoping that it wasn’t true.  It was only an hour later or so that the doctor came in and told us that he would be highly surprised if she wasn’t Down syndrome.  No matter how much I loved her and how much I had been prepared spiritually this was still hard news to receive.  It was accompanied with many tears over the loss of what we had expected for her life and worries of inadequacy for taking care of her followed by an overwhelming feeling of comfort and support from the Holy Ghost and from family and friends.  The most tears that I shed were over feelings of gratitude to so many loving and supportive texts, emails, messages, phone calls and visits.  I had many people tell me that I handled the news so calmly . . . here is why.  There was no physical preparation that helped me to welcome sweet little Ella with her disability but there has been months, years, eternities of spiritual preparation that have.  

The most obvious preparation that I could see started several months back.  In July of last year, I read a blog of someone who also had a sweet little baby with Down syndrome and all of their emotions.  The blog struck me to the core and I just bawled and bawled when I read it.  I then started worrying that our baby would be born with Down syndrome.  It bothered me for months but I kept dismissing it as hormones and me worrying for no reason.   It bothered me for long enough that I decided that I needed to pray about it and do some soul searching.  It wasn’t until this point that I was blessed with the sweet peace that if my little baby had Down syndrome or any disability, that it would be alright and not just alright but great because she would be exactly what Heavenly Father knew Nate and I would need.    Heavenly Father had been working on teaching us this lesson for quite some time now and the lesson is:  “Men and women who turn their lives over to God will discover that He can make a lot more out of their lives than they can.”  Ezra Taft Benson  We learned this lesson in searching for a job for Nate.  After much struggling, we learned that it did not matter where we lived as long as it was where Heavenly Father wanted us to be.  We had gained a strong testimony of this principle and had testified of it in church and to our Sunday school class several times.  Now it hit us again with full power of the Spirit that Ella was God’s will for us to help us grow and become more like our Savior. 

Now that I look back over the past few months I can see other tender mercies from the Lord preparing me to receive our little angel into our family:

·        A video for World Down Syndrome day posted by my Aunt.

·        A boy with Down syndrome moved into my kindergarten class a few months into the year.

·        A sweet new friendship made with a woman in my previous ward whose daughter has Down syndrome.

·        A funeral that I attended of a family friend who had many disabilities and he beat all odds and lived way longer than predicted.  His funeral was a huge eye-opener to me about how many lives he touched and made better even through all of his severe disabilities. 

·        The lesson in Relief Society the day before Ella was born was on adversity and wanting it in our lives to help us progress.

·        And the list goes on and on of the people and blessings that have come into our lives that will be a comfort and blessing to us in helping us raise her.

The family support that we have felt has been so wonderful.  The priesthood blessings, the prayers, the fasting have all been truly felt.  Ella is already SO loved by her grandparents, parents, aunts, uncles, cousins, etc. that any fleeting worry that I had about telling them that she was Down Syndrome just flew away.  I literally received nearly 50 texts within 1 hour of announcing Ella’s birth.  With all of the rush of getting her off to the NCU and working with all of the doctors and support team, I didn’t have time to respond to the texts but I read them and I cried tears of joy.  There have been so many comments that have been so appreciated but there were two comments that really struck me and opened my mind to something that hadn’t crossed my mind prior to the comment.  In my text I had stated how much Heavenly Father knew Nate and I needed Ella and I had a response from a dear family member that said, “The truth is that we all needed her in our lives.”  I again cried and cried realizing that she was here for a grand purpose just like any child of God is.  

The other response that was very eye-opening to me came from our pediatrician.  He was telling me that he knows someone who adopted two children with Down syndrome.  I said, “That just amazes me that someone would CHOOSE to have that in their lives.”  The doctor didn’t skip a beat, he said, “Don’t discredit yourself.  You CHOSE her too.  I believe that.”  “Wow!” I thought.  I know that I did choose to have her come to me in the pre-existence.  That is also another strong part of my testimony that was given to me so strongly about a year ago.  The Relief Society president in my old ward gave a beautifully spiritual lesson and there was something that she said that touched me so deeply and was testified to my soul.  She talked about how she had a friend with way more than her fair share of struggles.  The relief society president wondered why she had life so easy when life was so hard for her friend.  She prayed and learned that sometimes we don’t have the trials but that we are meant to be a comfort to those who do and that we promised that person in the pre-existence that we would be there to help them through their trial.  I know that when Ella found out that she would have Down Syndrome during her earth life that I promised her that I would love her and care for her here as long as she promised to inspire me to make the right choices to return to my Heavenly Father.

There is a song that made me cry every time it came on the radio during my whole pregnancy because it matched exactly how I was feeling.  I know that it is totally not what it was written for but man it all seemed to fit.  It’s “A Thousand Years” by Christina Perri.  I loved going to my appointments hearing her little fast heartbeat.  I knew that I had promised her in the pre-existence that I would love her no matter what.  Yet, I was still scared a little bit of the possibility of her having a disability but I would be brave.  But, when I saw her and held her my doubt suddenly went away because I knew I could take care of her and raise her with the help of my husband and the Lord.  I died everyday waiting for her especially that last month I became so anxious.  When I was given the choice to have the test to see if she had Down syndrome during my pregnancy, I decided I would not get the test because I didn’t care to know, because if she was Down syndrome I would still take her and never choose to abort her.  It tears my heart apart hearing some of the statistics of how many Down syndrome babies are aborted.  So my little Darling had no need to be afraid because I would accept her and carry her full-term and she would be mine for the rest of my life and throughout all of the eternities.   Every breath and every hour has prepared me for this moment.   “Time stands still, beauty in all she is, I will be brave, I will not let anything take away, what’s (laying) in front of me.”  “And all along I believed I would find you, time has brought your heart to me.  I have loved you for a thousand years, I’ll love you for a thousand more” and beyond.

So, when I say that I am not the same person I was two weeks ago.  What I really mean is that I am the same person, I just have discovered more of who I am and who I am meant to be and who I had promised to be in the pre-existence, a little more understanding of my divine nature and my purpose in life.  I am so grateful for my testimony of the atonement.  I know that my little Ella is a special and strong spirit and that she will be able to return to her Father in Heaven without a question.  I know that everything that I might grieve over like the possibility of her not getting married or not having children of her own will be realized in the hereafter and she will be blessed with everything that the Father has promised his children.  I couldn’t love her more and will try to live up to what she needs me to be.  

The Olympic Peninsula and Victoria, Canada Vacation!

This June we went on our Owen Family Vacation to Discovery Bay, Washington as our home base and ventured out to multiple other places to explore as much of the Olympic Peninsula as possible.  We had a great time and loved spending time with each other and the family!  One of the days we drove out to Port Townsend.  We happened upon this cute little fawn and its mother.  I loved the lighthouse there and the beautiful architecture of the buildings in the area.  

 Another day was spent in Victoria, Canada!  I have dreamed of going there ever since I was a little girl.  We visited the Butterfly Garden and the Butchart Gardens.  It was everything and more than I ever imagined.  It was absolutely breathtaking!  We also got to see the Parliament building and get a picture with a horse and carriage.   On the ferry ride back, Nick thought he spotted a dolphin and as we were watching for it to come back up, it was actually an enormous grey whale!

We also spent a day in Seattle!   We spent time at Pike's Place Market, visited the gum wall, walked through the public library, and went to the top of the tallest building there.  The public library's architecture was extremely fascinating and cool to look at and Nate thought about how crazy it would be to engineer it.  The gum wall is actually quite disgusting but very funny to see.  It is an entire alley way just covered in gum for as high up as people can reach.  The Columbia Center is the second tallest building West of Chicago.  We were able to spend time on the 73rd floor.  It was an awesome view and we had a lot of fun playing "I spy"  while we were up there. 

Of course we had to spend time at the ocean along the Washington coastline.  We hiked along the sand to see a sea arch and some seastacks.  It was our first time seeing seastacks, they are just awe-inspiring. 

 

  We also spent quite a bit of time in Olympic National Park.  We enjoyed crystal clear lakes, gorgeous waterfalls, beautiful green mosses and vegetation, enormous trees, and of course . . . rain!

 We drove through Mt. Ranier National Park!  What an amazing and prominent volcanic mountain.  We even got close enough to play in the snow and get a closer look at the beautiful blue and white glaciers!  There were also many beautiful waterfalls there. 

 Another day was spent driving out to say we had been to the very most northwestern point of the continental US.  It is called Neah Bay and Cape Flattery.  It is on a Native American Reservation of the Makah people.  The Cape was seriously the most picturesque pirate's cove I have ever been to and it was fun to look across the strait and see Canada.