From our Editor in Chief

By Cindy Fisher
I have often wondered whether my marriage could survive having a child with special needs. It must be a strain on a family. However, when I heard that Chris and Jodi had Alea, this is going to sound weird, but it felt right. If any family was going to be able to help one of God’s choices spirits, it would be the Garners. They are such positive people, and they have two older girls who could be of great comfort to their parents and little protectors of Alea. I can already see the older girls ready to go to battle against any other kid who may say something mean to sweet Alea as she grows older and enters school.

Maybe you’re like me, and basically the only exposure to Down syndrome you’ve had has been seeing a Down syndrome child in the halls of the public school you attended or through a movie or television show.
These next set of questions are harder to ask, and probably harder for Chris to answer.


How long after Alea was born did you realize there was something different about the way she looked? Did you suspect it was Down syndrome?
 
First of all Cindy let me thank you for the kind words.
When Alea was born it was kind-of chaotic in the delivery room. Right after she was born I went to take her picture and realized that we had left the camera in the car. I ran out to get it. I returned to snap the picture and found the nurses all busy around her. They were worried about the way she was breathing. I snapped a picture, and they rushed her out of the room.
I made sure Jodi was okay, I then went down to check on her. I walked in the door to the nursery and walked over towards her. Her head turned towards me, and she opened her eyes. I knew right then. It wasn’t super obvious, but it immediately entered my mind; “She has Down syndrome.” I asked the nurses if everything was okay, and they confirmed that it was. I dismissed the thought that had entered my mind. 
 
It took them a week to confirm it. When I would go in to see her in the hospital, I would talk myself out of her diagnosis. It is kind-of silly looking back on it now. I would tell myself that her eyes were still swollen from delivery (which they were). I would tell myself that since she didn’t have the simian crease in her hands she didn’t have it. It was an interesting week mentally. I fought those thoughts even though I knew full and well I loved her beyond measure.
 
Take us through those moments after you were informed that Alea had Down syndrome. Was it similar to a grieving process: Denial, anger, bargaining, depression, and then acceptance? Have you found that your mind goes through this cycle many times, even now? 
 
Jodi and my mom had gone to see Alea at the hospital before my mom went back home after helping us for a few days. They walked in and Jodi was on the phone with someone. My mom had that look on her face. The look you get after hearing bad news. I asked her what was wrong, and she just looked at Jodi and said Jodi could tell me. I asked Jodi to get off the phone. It seemed like it took her forever. I asked her over and over. In reality it was probably a minute, and I was probably a little rude. Once she got off the phone, she told me the nurse practitioner had told her it was time to just accept the fact that she had Ds and to move forward. The results weren’t back, but it was time to accept it. She said there was certain care that Alea needed, and they couldn’t move forward with it until we understood and accepted that she had Ds. The way we were told still bugs me a little, especially because there never was any change in her care or urgent procedures that needed to take place.
 
I felt fear, I guess. Anger probably. I know I was angry at the nurse practitioner and I channeled all of my anger into that. My frustration was evident as I asked my mom and Jodi how they could know without the test results. At that point EC came in and asked what was wrong. When we told her she said, “So. I will still love her.” I then went to my room and cried for a few minutes.
Soon after that I had to take my mom to Salt Lake to meet my brother who would be taking her back to Idaho. After a while of driving in silence, I hit a point that embarrasses me the most looking back. I said to my mom, “At some point the Lord needs to figure out that Jodi has been through enough.” Ugh. So ya, I guess you could say I was mad.
I don’t really liken it to grieving, although it probably is the same. After the initial 24 hours or so it wasn’t a constant process. There were moments where it would hit me, and I would feel that fear or worry for Alea, but they were only moments. I still worry for her, but it is different now. Not sure how to explain.
 
In a letter I wrote to my family I said, “The hardest thing for me with this diagnosis, is that people may feel sad or sorry for us.  This is not the time for sorrow; we have had our share of sorrow. This is a time to celebrate this new life that has come to our home to teach us to be more Christlike.” We deal with grief on a daily basis for people who are no longer with us, so maybe that is why it is difficult for me to compare the feelings of uncertainty we feel with Alea to feelings of grief.
 
Who did you seek out first for emotional support after learning about Alea? 
 
I sought out Jodi. She is such a strength. After Jodi, I probably sought the advice of my parents. I have been that way since I was young, and they always have sound advice. I have been blessed with goodly parents.
 
Tell us about some of the people who have helped you look at the situation in a new light, or who has been a guiding help for your family? What has been some good advice or counsel you have received concerning Down syndrome? What new insights have you had that you could share with us?
 
This is a difficult question to answer. It amazes me the immediate support we received and continue to receive from other parents with children who have Down syndrome. I have a cousin who has Down syndrome. I called my aunt or she called me in the days soon after Alea was born with some sound advice. Everyone who has experience from similar situations has always said that these kids bring so much joy.
 
It is like anything that is new, though. I served a two-year mission for the LDS church. I remember getting out on my mission with the other 180 young men and women assigned to Belo Horizonte, Brazil, with so much energy, excitement, and perhaps unrealistic expectations. Others who were more seasoned looked at me, I am sure, thinking, “He will learn.” Plato once said, “Wise men talk because they have something to say; fools, because they have to say something.” Being a new parent of a child with Down syndrome, I worry about being in that stage where I have to say something. The entire purpose of this blog is to raise awareness for Down syndrome, but I do worry that those seasoned parents are wondering if I just have to say something. 
 
As far as enlightenment, I think I have gained the most from my ever-evolving world view. As a member of the LDS church, we believe that kids with special needs are God’s most choice sons and daughters. If you stop and think about it, that is quite an honor. I have also been working on a master’s degree for the last year and a half in mental health counseling. The program has helped me be more accepting of all people and of my circumstances, whatever they may be. There have been two books I have recently read that have helped improve my world view. Both Ekhart Tolle’s The Power of Now and Michael Robinson’s Believing Christ have influenced my thinking about the life that presents itself to me each day.
 
What statement or expression do you wish people would NOT say to you when they learn your child has Down syndrome? What generally was people’s reaction when they heard about Alea’s condition?
 
“Oh, I am sorry.” That is the worst reaction. For some reason at first I hesitated to tell people, because I was afraid of their reaction. I am not that way now. It will be a challenge for Alea, but it is not something she did wrong. It doesn’t make me mad that people say that; they are doing their best, and I know I didn’t know what to say. For the most part, people congratulate us and cite an experience or two of the wonderful interactions they have had with people who have Down syndrome.

Austin’s Birthday Party

We released balloons (sorry environmentalists), sang Happy Birthday and ate cake.  It was a good family party.

Introducing Hero Film Friday - Anna

Each Friday I am going to post a video of someone I have come across that I consider a hero.  I just came across Heather's blog this morning.  Watch the video, visit the blog, and you will agree that her and her family are heroes!

Our Journey to Anna: Child of Light

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.

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.

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.

Discussion:

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.

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.