Tuesday, November 30, 2010

Happy Birthday Austin Terry Garner

I started this blog as we began our physical and spiritual journey with Alea, the angel that came to our family on August 14, 2010.  We began a spiritual walk with another angel, our son Austin, on November 30, 2007.  He was born with a lethal abnormality and was only with us for 2 short hours.  I cannot describe the impact these two short hours have had on Jodi, Keena, EC, and I.  It has changed our spiritual outlook on life as well as increased our testimony that families are not just until death do us part, they are eternal.

I truly believe that one of the reasons we were given the blessing of having Austin was to prepare us for things that would came our way over the last 3 years.  Through Austin, the Lord has shown us that He is mindful of us, and that He will take care of us.

I have wanted to introduce Austin to the blog for sometime, but haven’t been able to decide how to do it.  At the time Alea was born, many would tell us that our family had been through so much.  I must admit, even I had thoughts and feelings about how much Heavenly Father would continue to ask Jodi to bear.  I did not want to add this perception to those who came to this blog, but did not know our story.  I wanted to use this forum to create awareness for Alea and Down syndrome.  I wanted to show people that Alea is as much a blessing to us as our other daughters have been.

With that being said, it is hard to share the complete walk with our angel, without including our angel that waits for us in heaven.  One thing I do not want this blog to be, is a typical mommy (daddy in my case) blog.  Jodi and I are both optimistic people, but that does not mean that challenges have not been hard.  As they have been hard, they have unified our little family in a way that cannot be described.  I am in awe of the spiritual maturity my older two girls have, and I credit that maturity to the lessons the Lord has taught them through our adversity.

I have decided to share a personal letter I sent to my family 3 weeks before Alea was born.  We had no idea of the unique opportunity Alea was waiting to provide us with.  The Lord did, however.  As you can see from the letter I sent to close family and friends, He wanted us to know that He is God, and He is with us.  The miracle you will read about did not make complete sense until Alea’s diagnosis was confirmed.  Indeed I am grateful for His mindfulness of us.

Letter Written July 22, 2010:

I thought I would take a moment and share a tender mercy that we experienced this last week.  As most of you know, Jodi and I lost our son Austin 2.5 years ago.  Due to a lethal abnormality, he lived only 2 short hours after being born at 22 weeks.  I recorded the details of this experience on my blog if you are interested [It can be found on this blog on the Angel Austin page].  

At the time [of his passing], we decided  not to bury him, and to have the hospital take care of his remains for us.  Looking back, this has been a source of regret for both Jodi and I.  It is definitely something we wish we could go back and do differently.  This regret has increased since Jodi lost her dad and brothers in a plain crash last year.  It weighed especially heavy on us since Memorial Day.  We wanted a place we could go visit his remains and memorialize him.  I don't think that this desire was just between Jodi, the girls, and I, as a few extended family members expressed these feelings after Memorial Day.

On Thursday of last week, the U of U hospital called.  I am still not clear on the details of why, but they told Jodi that they still had Austin's remains.  They have started a program where they would place him in a cemetery in SLC with a nice marker, or we could come get his remains and bury him where we wanted.  We have decided to bury him with Jodi's dad and brothers. 
What a blessing!!  It has brought much joy to our household.  We will be holding a graveside service for him in Idaho.  Depending on what Jodi's Dr. says about her traveling it will either be next week, or about a month after the baby comes in August.

This has been a true testimony builder for me.  I know that God loves each and everyone of us.  I know he is mindful of our situations and that he knows how to teach us and humble us if we listen and do our best to follow him.  I debated whether to share this over email, but I really wanted to share it with those of you that have supported us over the last few years.

Love, Chris

It should be noted that Jodi was inspired to go to Idaho and have the service before she had the baby.  If we had waited until after, Alea’s health would not have allowed us to do this until probably next spring.  How grateful for a wife who listens to that still small voice.  Happy Birthday son, we are thankful for all you are to us.  We continue to work so that there will be no empty chairs in Heaven.

Below are some pictures from the service held 7/30/2010.

Saturday, November 27, 2010

Angels Earn Their Wings

A common thing we heard after Alea was born, was about her free pass into Heaven.  I truly believe that kids with intellectual disabilities are guaranteed a spot in Heaven, but that spot is anything but free.

As I have learned more about Down syndrome, I am constantly reminded of my pre-Alea ignorance.  I had no idea what these kids go through.  As I have come to know more about families that have kids that have so many health issues that are due to their extra chromosome, I am in awe of the power of their spirits.  In every case, these kids bring so much joy to their family as they set an unbelievable example of determination, endurance, and will power for the rest of us.

Along this walk I have encountered many little heroes earning their wings.  There is the story of 6 year old Emma, who has diabetes and Celiac disease.  She dances too!  Stop and think about her story for a minute.  Down syndrome, diabetes, or Celiac Disease are all life altering conditions by themselves.  She has all 3!  What bravery Emma shows as she deals with it.  What an example of love her parents and siblings are to all, as they help Emma be her best.  Although it has to be hard, I have never talked to her mother that she has not had a smile on her face.  Emma is earning her wings.

Then there is Vada.  An absolutely adorable baby girl.  Over the last while, she has been experiencing frequent seizures.  As I have followed her story, it is clear how stressful this is to her parents, yet they proceed forward with faith in God.  Each day they face their new challenges head on hoping for the best for Vada as well as her other two siblings.  Recently the seizures have been less frequent.  It does not matter that her family attends a different religious affiliation than I do, their faith in God is undeniable and exemplary to me.  I continue to pray for Vada and her family, and I would ask you to do the same.  Vada is earning her wings.

These are just a two of the many examples of courage and faith that I have come across on this walk with our angel.  As I type this inside of a sleep center, I am very aware that my challenges are minimal.  Alea is currently hooked up to several wires as she tries to sleep so that the doctors can evaluate her O2 levels as she sleeps.  It is not critical, just the doctors trying to make sure she is getting all the O2 she needs.  Having been through a sleep study myself, I know it is not fun.  Alea, however, is resilient and continues to bring a smile to my face as she deals with being poked and prodded with such bravery.  I am glad she is my daughter and that her example is present daily in my life.

Here are some pictures of Alea earning her wings.


Monday, November 8, 2010

Introducing our Editor in Chief

I am introducing a new feature on this blog.  About every 3 weeks, I am going to have a good friend of mine, Cindy Fisher guest host the blog.  I grew up with Cindy.  She was the hard hitting journalist of the school news paper and I was in student council politics. Even after that, we are still friends, closer now than we were then.  She graduated from BYU with a journalism degree, and I thought she could help flush out some of the information that you guys may want to know.  I appreciate her willingness to ask questions that people want to know, but are sometimes scared to ask.  Here is Cindy's article.

Hello readers of this blog who likely somehow have some connection with Jodi and Chris. Or maybe you just found out a sister, brother, daughter, cousin, or good friend has delivered a baby who has Down syndrome, and you stumbled upon this site from a Google search.

My name is Cindy Fisher, and I’m guest hosting this post today. Chris and Jodi were classmates of mine when we all attended Minico High School in Rupert, Idaho in the 90s. Chris was our class president and Jodi was our class vice president. I was the editor of our high school newspaper, and Chris knows I like to ask a lot of questions.

In June I gave birth to my fourth daughter. Nearly two months later, Jodi gave birth to Alea. Chris and Jodi and their family have been on my mind a lot as I care for my daughter. I have wondered how they are doing; what are the differences and similarities of raising a child with Down syndrome?

So Chris said he’d be willing to answer some of my questions. He’s willing to do this so that if you find yourself in the same shoes, maybe you’ll find comfort from knowing others have walked your journey too. Or maybe you’ve been ignorant about the subject, as I have, and now that someone in your life has Down syndrome, you want to know more.

This will be an ongoing feature of this blog. I may not always be the one asking the questions. If you have a question, comment at the end of the post and when time allows, Chris will create another post answering more of your questions.

Please know that I have been completely oblivious about the subject of Down syndrome. If my questions seem painfully obvious what the answer is, I’m so sorry. These questions will deal mostly with raising a child with Down syndrome. I probably have many more questions, but these will have to do for this month.


Cindy Fisher: Does Alea eat normally? 

Chris:  Yes, for the most part.  It did take some time getting there.  Jodi was not able to feed her for the first week of her life.  They fed her through a tube using Jodi’s milk.  They slowly started having Jodi feed her until she could be sustained with nursing alone. 

Cindy: Does she eat more or less often than babies without Down syndrome?

Chris: I am not sure, but I would guess it is the same. You have to remember it has been 7 years since we have had a newborn.  She is growing great, so she must be eating what she needs.  At first they worried about feeding her too much.  Babies with Down syndrome, we were told, have a tendency to retain fluids if they eat too much.  In order to get her the nutrients she needed in smaller feedings, formula was mixed with Jodi’s milk to get her 22 calories with less volume.

Cindy: Does she nurse?

Chris: Yes she does.

Cindy: Does she sleep much at night and during the day? The reason why I ask that is because I know some diseases can cause babies to sleep in little spurts throughout the day, and I wondered if babies with Down syndrome sleep a lot, a little, or just like most babies.

Chris: Well, she sleeps better than our other two did at this age.  She sleeps through the night and takes normal naps during the day.  She sleeps like most babies.  It is important to mention that Down syndrome is not a disease, just like me having brown hair and blue eyes is not a disease.  Down syndrome is in her genes I guess you would say.  

She also poops like most babies as well, just in case you were wondering. 

Cindy:  At what month did Alea start smiling? 

Chris: Alea smiled at Jodi when she was 6 weeks old.  She smiles all the time now.

Cindy:  What were your feelings when you saw her first smile?

Chris:  I love her smile.  Not sure I really had any specific feelings other than happy.  Happy because she is happy.  Just being around her is a blessing, and so when she smiles it makes it that much better.

Cindy:  Does she grab for objects yet?

Chris:  Yes, she started playing really well with her baby gym at around 4-5 weeks.  Kids on the Move comes and meets with us to teach us some early intervention techniques to help her practice her muscle control.  One of our short term goals is for her to grab a toy and hold on to it for 30 seconds.  Her fingers are opening more and more and she is starting to grab thinks like small rattles and rings.

Cindy:  Can she recognize you and Jodi yet? 

Chris:  Yes she recognizes us.

Cindy:  Does she prefer Jodi over you?

Chris:  Have you seen me, Cindy?  Of course she prefers Jodi to me.  Jodi is much easier on the eyes than I am, even if I do say so myself.

Cindy:  Is she cooing? 

Chris:  Yes she does.  It melts my heart. She definitely has her dad already wrapped around her finger.

Cindy:  Can she turn over yet? When did that happen?

Chris:  No, she cannot turn over yet.  We are working with her to try and get strength in her neck so she can sit up, but she is not turning over.

Cindy:  What have been some interesting personality traits/habits of her so far? Can you tell her angry cry verses her bored cry or hungry cry?

Chris:  She really doesn’t cry much, but we can tell the difference when she does.  She has a mad cry, which we have only seen a couple of times. She has a bored fuss, and she has a “give me some attention” noise she makes.  She rarely has to make the last one.

As far as personality, she is such a good baby.  My guess is she will be very easy going.  She also loves to watch BYU Football with her dad already at such a young age.  :)

Cindy:  Has she been able to go with you to church yet, or do the doctors advise a few more months away from the church scene?

Chris:  She has not gone to church.  I was not aware of this before we had Alea but children with Down syndrome are much more susceptible to respiratory infections.  The doctor recommended 5 years before she goes to church. J  He did say that was not practical but recommended 6 months.

Cindy:  Does she have one main doctor?

Chris:  She has a pediatrician that is her main doctor.  We have talked to a geneticist, cardiologist, and are scheduled for a Pulmonologist this month.

Cindy:  Are her doctor visits with local doctors or do you take her to Primary Children’s?

Chris: Our pediatrician is Dr Wiepert in American Fork.  The specialists are in an extension of Primary Childrens in Riverton.

Cindy:  What does a geneticist do? 

Chris:  He spent time with us explaining what type of Down syndrome that Alea has.  There are 3 different types, Standard Trisomy 21, which is the most common is what Alea’s form is. 

Cindy:  How often will she need to visit the specialty doctors? Her whole life?

Chris:  We hope not her whole life.  It is not the Down syndrome that has her seeing specialists, just her other health issues that can be more common in children with Ds.  I am sure there will be checkups on her heart and lungs for some time.  Right now we just want to get her off the oxygen.

Cindy:  Are there extra medications Alea has to take? And does she still get shots?

Chris:  There is no extra medication needed for Down syndrome.  She does have other health concerns like Pulmonary Hypertension.  She is still on oxygen for that.  She is current on her vaccinations and will be getting a shot that most don’t get to help prevent RSV.

Cindy:  Balancing your attention between children is a struggle for all parents to manage. I know for me personally, having my fourth child has really bothered me how much time I devote to her, and I fear some of my other children may be losing out on my attention. Has that struggle been amplified with Alea? Do you fear your other girls are getting enough attention? How have you and Jodi tried to handle that tender balance?

Chris:  Um…this hasn’t been a real issue.  We all want to be around Alea, so we are all together.  It is difficult at times for Jodi since we can’t take the baby out, so one of us is always home with her.  It can make extra activities for the other two girls a little hectic.  So far we manage as Jodi usually just loads them up in the car and drops them off at dance and piano without having to get out of the car. We have the primary program next week, so we will have to get creative, but we usually get it figured out.

Cindy:  Because we share a common faith, and because our faith testifies of a prelife, has having Alea caused you to reflect more on the eternal nature of man? What, if anything, has changed or deepened your perspective about your faith and your family since having Alea?

Chris:  Good question Cindy.  The name of this blog has significance to our family as we truly believe Alea to be an angel here on earth.  As you know, we lost a son 3 years ago, and Jodi lost her father and two brothers in a plane crash 14 months ago.  Needless to say, our family has a host of angels to watch over us.  We feel so lucky to have one of our angels physically present in our home.

In the two weeks after Alea was born, she was in the hospital and our lives continued at home, just as they had before she was born.  The 4 of us, Jodi, EC, Keena, and myself.  It was so empty however.  Our home had emptiness to it.  The moment she entered our home, the emptiness left.  It left immediately and there has been a spirit of peace ever since.

I could go on for some time about how it has changed my perspective on the eternal nature of man.  One thing that is for sure is that it has changed my perspective of how we should interact with others here and now.  Having Alea has made me want to be a better person and help others more.  I guess I want to be less selfish.  I need to be more aware of others and how I can maybe give them a hand in their challenges as people have done for us.

I believe that families are together forever.  I know this to be true!  I know that Alea was one of God’s most choice spirit children in the life before this one, and I cannot wait to live with her together forever.  She has brought the pure love of Christ into our lives.  The closer I get to her, the more I learn from her, the more charitable I want to be.  I know that I am a son of God, and He is mindful of me.  With that mindfulness, He has given me the magnificent blessing of walking with our angel.

Cindy, thank you so much for your time, and I look forward to our next chat.  I hope the answers have helped you know more.

I am grateful for selfless parents who—perhaps for a lifetime—care for a challenged child, sometimes with more than one challenge and sometimes with more than one child. – Elder Jeffrey R. Holland.

Monday, November 1, 2010

Take the Pledge!

Catching Up

I apologize for my lack of posting.  It has been a busy few weeks.  Alea is growing more and more each day.  It is amazing the spirit Alea brings to our home.  This last week we did spend a few hours on Monday and Friday at Primary Childrens' Hospital.  Alea had a fever both nights, and the Dr. sent us straight to the hospital.  All tests came back negative and the fever left a few hours after it came.  On Friday it left without even using Tylenol.

Sisters for Awareness

The Keena and EC both turned in video projects for this years PTA Reflections Contest.  You can read more about the contest here.  They both decided they wanted their projects to be about Down syndrome.  As they had to do the work themselves, I couldn't be more proud of them.  Take a look for yourself.

EC's Project
Here is what EC said about her project.

"I did it because my sister has Down syndrome and they make me smile. Kids with Down syndrome are more alike than different because they love us. I chose the song because it says to "make you feel my love". And because I had a warm feeling that song was the song I was looking for."


Keena's Project
Here is what Keena said about her project.

"My project goes with the theme because the theme is Together We Can. My title to go with that theme is Together We Can Spread the Word to End the Word. I think it is important to help prevent the R-word. It makes people with learning disabilities feel disconnected with other people. My thoughts are if everyone took the pledge, I think that word would be long gone. I have a little sister who is 2 months old, that has Down syndrome. If she was called the R-word it would get her feelings hurt and my families feelings hurt. Help me spread the word to end the word by watching this video! I hope you enjoy the show!"

To take the pledge, please visit www.r-word.org .  Let the girls know if you do, they are keeping track.  So far they both got their classes to take the pledge, on their own.