From Our Editor in Chief – God Loves You

Many years ago, I had a sister who was going through an incredibly difficult time in her life. My heart broke for her as I watched her struggle with her faith and her concept of herself. This sister always had a huge heart, and she knew that in order to bring herself out of the depression she was in, she needed to give service to others who had it worse than her.

She joined a mentorship program and was responsible for a teenage boy with severe autism. Anyone who knows someone with autism knows that they struggle greatly with non-tangible things such as religion or faith. The boy’s mother was a drug addict, but her parents, the boy’s grandparents, were faithful, church-going people. They would take the boy with them to church, but he didn’t get much reinforcement from his mother.
My sister retold me an incident she had with the boy where he asked her, “Does God love me?” My sister was at that time struggling greatly with that question herself. She didn’t exactly know how to answer him. She gave him a vague, “Yes, he does.” But she didn’t feel it was true, and it scared her.

When she came to me with this problem, I too was caught off guard. Well, yes, He loves you, but then I didn’t know how to put it so she understood. And I’ve thought about that conversation many, many times for a way I could answer someone if they came to me with that question again. A “yes He does” doesn’t seem sufficient. And even more, how do you explain that to a child of God who struggles with learning disabilities, or someone who, unknowing to most people, is living life as a spiritual paraplegic?

Recently I’ve returned to work full time, and to help me stay awake, I sometimes listen to a radio program produced by The Church of Jesus Christ of Latter-day Saints. The site has different podcasts that would be beneficial for anyone of any faith who enjoy listening to uplifting, positive people. The podcast I was listening to on one particular morning was of a woman describing the struggles she endured in raising three children with severe handicaps.

The woman’s name is Joyce Erickson, and you can read more of her inspiring stories on her Web site, www.our-beehive.com.

This one particular story she told was about her son, Mark. As Chris can appreciate, Mark loved all things BYU football. I didn’t hear the particulars of his condition, but I could tell that Mark couldn’t walk, had limited speech, and he had a learning handicap. (Joyce said her son likes to refer to himself as handicapped, so that’s why I use the term “handicap.”)

He was getting off the bus one day when he was in high school, and Joyce could tell he was sad, which wasn’t typical for Mark. She could tell he was on the verge of tears, so she hurriedly pushed his wheelchair inside the house and let him cry for a few minutes.

She finally asked him, “Did something bad happen to you at school today?”

Mark answered, “Mom, the boys at school are so lucky. They can run, and they can play football, and they can run fast and run races.”

From here is where a stroke of genius or a beautiful intervention of the Spirit of God hit Joyce, and what really struck at my heart. She repeated the following conversation:
“The boys at school are lucky, Mark, but did you know what? Everyone in some way is lucky. Did you know that?”

And he said, “No.”

And I said, “Well, they are.” And without even thinking about it before hand, I held up my left hand and I pointed to each finger, and I said, “Mark, your friends are lucky,” as I pointed to each finger, “because they can run, they can play football, they can ride bikes, play computer games, and write…”

“And draw,” Mark said.

“Yeah, and draw,” I said. “But you know what, Mark? You’re lucky, too.” And I held up my right hand, and I said as I pointed to each finger, “You’re lucky because you got to go into the BYU locker room and meet all the BYU football players, and you got to meet the BYU basketball players. And you got to sing with the Tabernacle Choir. And you got to meet Brother Ottely, who is the leader of the Tabernacle Choir.”

And then Mark said, “And go on the U.S.S. Nimitz.”

And I said, “Yeah, and go on the U.S.S. Nimitz. Do you know how else you’re lucky, Mark?”

And he said, “No.”

And I said, “You’re lucky because everyone likes you. I don’t know anyone who doesn’t like you. Do you know one of your friends at school said to me once, ‘Mark, is so lucky. I wish I had as many friends as Mark has.’ And when you were running for governor of the fourth grade, a girl who was running against you said, ‘It really isn’t fair. Everybody knows Mark and everybody likes him.’”

I said to Mark, “Did you know that?”

And he said, “No.” But then his face started to brighten up a little bit.

And I said, “Do you know how else you’re lucky, Mark? You’re lucky because Satan can’t tempt you. Satan can tempt your friends to lie and to cheat and to steal and to disobey their parents and to be mean to other people, but he can’t tempt you to do any of those things.”

“Everyone is just lucky in different ways. Your friends are lucky in these ways,” as I held up my left hand.

“And you’re lucky in these ways,” as I held up my right hand.

“Mark, if you had a choice, would you be lucky like this,” as I held up my left hand, “like your friends are? Or would you be lucky like this,” and I held up my right hand, “like you are?”

And without even hesitating he said, looking at my right hand, “I want to be lucky like that.”

Isn’t that story beautiful? That story makes me want to be a better parent.

So to answer my sister’s question of the boy with autism who wondered, “Does God love me?” I would emphatically say, “Yes, He does!” And I would list all the ways God loves that boy, and I’d do the same for my sister. And I would be specific. I wouldn’t give rote answers geared toward all individuals, but specific examples of why that boy is lucky. Hopefully it would help him to see God’s hand in his life. Because He’s there—in all our lives.

Cindy Fisher
Editor in Chief
awalkwithourangel.blogspot.com

From Our Editor in Chief – Life Goes On

Editor in Chief (EIC) - These next questions make me uncomfortable, but I’m going to ask them anyway. These questions are probably influenced by that 90s drama Life Goes On, which as you recall Corky, the son with Down syndrome, had a girlfriend. Answer if you’d like.

Chris - I also remember this TV show. It was one of my family’s favorites. There were times in Jr. High or high school, however, when I was with my friends, that I would make fun of the show. I have to admit, I feel a lot of shame about that. Any person with Down syndrome or a learning disability that I knew, I treated with respect. But how hypocritical I must have been when a friend did something silly, or dumb, or stupid for me to reference Corky or the theme song of Life Goes On. I can’t go back and change it, but I feel very shameful for anytime I made light of someone’s intellectual disabilities. Every day for the rest of my life, I will try to make that up to Alea as I feel like that let her down.

EIC - Don’t be too hard on yourself here, Chris. For people of our generation, Corky is a name we’re all familiar with, and we’re all not proud of using it the way we probably did. It’s like my good friend Oprah says, “When you know better, you do better.” She’s quoting Maya Angelou when she says that, so out of the mouth of two or more influential women, it must be true.

Looking ahead, what type of life will Alea likely have in her adult years? Will she be able to live on her own? You posted a YouTube video about a girl with Down syndrome who was planning for college. Do you see college as a possibility? Is that common?

Chris - Cindy, I will be honest, looking too far ahead scares me. There is so much unknown that I can get caught up worrying about. Right now we are dealing with some effects of pulmonary hypertension. Alea has severe sleep apnea. I know several parents who are dealing with so many more health issues than we are. One is dealing with leukemia; one is dealing with seizures; and another is dealing with diabetes and celiac disease, as well as Down syndrome. I could just make myself sick trying to worry about it all.

I have dealt with some pretty significant anxiety in the past. I still do on a daily basis. It is something I have to fight constantly, so I have to be mindful of the things I can control and the things that I can’t. Our plan for Alea is for her to be the best she can be. We see it as our responsibility to see to it that she reaches her full potential, just as it is with our other girls.

Jodi works tirelessly doing early intervention with Alea trying to get her skills to develop as quickly as possible. I do know that she is a very smart little girl and works hard to learn. I can also tell that she has social intelligence that is on par with where our other girls have been at the same age.

Long story short, yes, college is a possibility and it happens more than I ever realized. Our role is to help her get there if that is something she chooses to do.

I will admit, I catch myself wondering how we are doing with keeping her where she should be. There was a neighbor girl in our church that was born 10 minutes after Alea. When I see her in church it is hard for me not to look at her and see what she is doing: Is her head strong; can she grab toys; etc.? I have almost caught myself wondering how Alea is progressing in her development when compared to her little church friend. When I catch myself doing it, I try to stop and remind myself that Alea is Alea. She will be her best, and her best already is a blessing to me.

EIC - Will Alea be able to get married? Are there laws preventing those unions?

Chris - I am not aware of any laws preventing this. There is a movie out about a couple named Monica and David. It is about a Down syndrome couple that got married. I started watching part of it a couple of weeks after Alea was born and it was hard. There were challenges the family faced (it had nothing to do with the marriage) that I wasn’t ready to think about at that time. I need to go back and watch it now.

EIC - Are kids a possibility for Alea? (I think they are, because I saw a Law and Order episode once where a girl with Down syndrome was impregnated.)

Chris - I do not have information on this.

EIC - What is the common life span of someone with Down syndrome?

Chris - I have heard it is around 60-65 years. Part of me thinks I should do some research, while part of me doesn’t need to.

EIC - What are your hopes for Alea’s future?

Chris - I hope that Alea can do what she came to earth to do. Help those that need her. The other day I got home from work after a long week of work. I was not in a good mood. She would not take her eyes off of me. She followed me with these caring eyes wherever I was in the room. Her social awareness is such that if you look back at her she won’t keep looking in your eyes as there is that perceived un-comfortableness. We all feel it. That was not the case this night. She looked at me constantly with such loving eyes. I finally picked her up and she laid her head on my shoulder and gave me a hug. She has a gift to tell if someone needs help. I know she felt that I needed to feel of her spirit, and she made it happen.

We will parent her just like most would parent any child. We will do anything and everything in our power to give her the confidence, practice, and support to be the best that she can be. We love her and are glad that she is a part of our eternal family.

Next month: School questions.

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.

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.