Antoine de Saint Exupery, in his famous children’s book The Little Prince, tells of the Little Prince who comes from another planet to visit the earth. On his previous planet, there was only one rose bush, which led the prince to adore his rose. He anguished when he came to earth and found a garden with hundreds of roses just like his own.  While walking through the rose garden the little prince talks to the roses saying:


“You are beautiful, but you are empty . . . One could not die for you. … To be sure, an ordinary passerby would think that my rose looked just like you—the rose that belongs to me. But in herself alone she is more important than all the hundreds of you other roses: because it is she that I have watered; because it is she that I have put under the glass globe; because it is she that I have sheltered behind the screen; because it is for her that I have killed the caterpillars (except the two or three that we saved to become butterflies); because it is she that I have listened to, when she grumbled, or boasted, or even sometimes when she said nothing. Because she is my rose.” Antoine de Satin-Exupery, The Little Prince, p. 87

What made his rose special? It was his rose. What made him love the rose? The service he gave to the rose. He thought the rose from his planet was more unique—more special—but really what made it so unique and special was that fact that it was his. 


Our world is filled with needs. Like each rose, each need is special. We have been blessed with a most incredible “rose” that we listen to when she grumbles . . . or “even . . . when she said nothing.” What makes my rose—my Elise—so special? She is mine.


Another favorite quote which describes the prince and probably describes Lindsey more than me: “What moves me so deeply, about this little prince who is sleeping here, is his loyalty to a flower—the image of a rose that shines through his whole being like the flame of a lamp, even when he is asleep. . .’” Antoine de Satin-Exupery, The Little Prince, p. 94


Not every dad gets a flower on valentine's day! I am sure thankful for my unique, special, perfect, rose.
​

A few days ago Elise graduated from Kindergarten. As our family passes through certain milestones with Elise they can be difficult. We certainly have moved passed wishing  our situation was different; nevertheless, these little glimpses can be a bit sad and force feelings that can be challenging when they surface.

​At graduation each little student was called by name and marched up to received their diploma. While the student walked the teacher would read what the child would like to be when they grow up. This is always a cute exercise. In fact, the little boy called after Elise said that he wanted to be a ninja when he grows up! I suppose it is our fault, but when several kids had their name read and the future doctors, basketball players, and cowboys of future years received diplomas the teacher read, “Elise Gwilliam”. Then silence. I guess we should have prepared for this moment a little better but because Elise can't talk or communicate her dreams and wishes, she and we were left with silence. 

So, I write this today to fill in that very silent blank. Elise what will you be when you grow up?

You will be happy. You won’t get paid for your incredible smile and contagious giggle, you won’t be rich or famous but you will be happy. Mom and Dad will be by your side this whole journey through. You will have everything you ever need and laugh and play and simply be happy.


You will be a teacher. You will teach anyone who is keen enough to listen, learn, and spend time with you. You will teach them about patience, goals, dreams, and longsuffering. You will teach others about gratitude and grace, about love and kindness. 


You will be a light. Others who know you or see you will find within you a light that ignites from a source other than words. You will make their day better, they will see in you what special really means. 


You will be a daughter and a sister. Perhaps the most important title you can ever have. You will be our family.


You will be perfect. You will one day have a body that magnifies your unique, unconquerable spirit. It will allow you to more fully radiate what is inside of you. The limitations of mortality will one day be reversed and because of the Resurrection of Jesus Christ, you will be perfect.


You will be free. The ravages of disease, syndromes, genetics, and every other part of earth’s limitations that bind you will be taken away. You will be free to use your hands again, free from pricks and pokes at hosptials, free to speak what is in your angelic mind, free to be calm, free to have your mind choose to move your body. You will be free.


Perhaps, Elise, your future is brighter than any other student in our little town. What will you be when you grow up? You will be happy, you will be a teacher, you will be a light, you will be part of a family, you will be perfect, you will be free.


All of that is better than being a ninja anyway. 

I have two new favorite words to describe our situation with Elise. After honestly acknowledging some of the very real difficulties and the overwhelming joy of having a special needs daughter brings, two words really seem to explain it quite well: constant and complexity. I think complexity is an obvious choice, the doctors appointments, therapy schedules, trying to communicate, arrange baby-sitting, and seemingly ad infinitum; yes complex is a good word. I suppose constant probably sounds rather obvious as well, it really is never-ending and the daily complexity associated with Elise is dauntingly constant, yet normal.
 
This is going to sound silly, but in some regards it is much like cutting your fingernail too short. Is it going to kill ya? Nope. Is the pain constant? Yep. But even that constant insignificant problem is mostly forgotten until it gets hit, or you bump it, or try to throw a baseball.
 
Years ago I actually did clip my fingernail too short. It wasn’t a big deal, but it was a little annoying. One morning the alarm clock (or Mom’s voice, I’m not sure which it was) said it was time to wake up. That morning my finger hurt, and there was nothing worse than having to milk the cow with a fingernail cut too short. I know it sounds ridiculous but anyone who has ever milked a cow knows what I’m talking about (yes you can call me a baby). Nevertheless, that morning I told my twin brother Aaron my constant yet small problem and pain. To my astonishment Aaron said something like, “Sorry, I know what that is like, I’ll milk for you today.” I was flabbergasted, it’s not like I was sick or dying, it was just a stupid, simple fingernail, but he milked the cow for me. I don’t know if Aaron remembers doing that, but I’ve never forgotten his unexpected kindness.

With our constant complexity there have been so many who have helped and blessed us in amazing ways, just to ease, for a moment, the constant pain. These tender mercies come in the form of someone asking sincere questions about Elise, a shoulder to cry on, flowers dropped off at the house, a kind phone call, taking the kids for the weekend, the kindness and understanding of dear friends who have asked questions, who have seen me cry, who withheld judging the cleanliness of our house or the coherence of some sobbing sentence. Family members who call, and even friends who “share” and “like” not to mention those who just show love and kindness to Elise.
 
So to me, raising a child with special needs is like that fingernail. At the start it seemed more like a throb but over time the pain continues to dull; however, there are strong reminders all around that make you wince when it gets bumped, and those reminders seem to be everywhere. Here’s a few examples:

• While watching the older kids sporting events  a twinge of sadness hits when I realize Elise will likely watch hundreds of games but never play in one.
• When Elise looks in your eyes and holds it for just a second or two and you just wait for her to say “love you daddy” but those words remain unsaid.
• When she is in pain and can’t let you know, and later while tucking her into bed finding her feet with slivers but couldn't tell you.
• This sounds really silly, but even watching movies or listening to music can do the same thing for me. For example, while jogging the other day, a song from the Disney Movie Mulan came on. Here I am an adult man jogging down the sidewalk and I just broke down and started to cry as I ran listening to the lyrics with ears tuned toward Elise:

. . .
Who is that girl I see
Staring straight back at me
Why is my reflection
Someone I don't know
Somehow I cannot hide
Who I am though I've tried
When will my reflection show
Who I am inside..
When will my reflection show
Who I am inside...
 
While her reflection does portray her perfection, I sometimes wonder what she thinks and of course I think regularly about who she really is inside. Since then I added that song to my running playlist and it really motivates me to run even faster! (Which isn’t that fast in case you were wondering).
 
Well I could go on and on, but there are daily reminders everywhere of the constancy of Elise’s plight. Daily little bumps on that finger to remind you it’s still there.
 
 
One of my favorite quotes comes from Jeffrey R. Holland who said, “Surely the thing God enjoys most about being God is the thrill of being merciful, especially to those who don’t expect it and often feel they don’t deserve it." I didn’t expect that kind of mercy on that particular morning where I was spared milking Molly by my compassionate brother. Similarly, I have never expected the constant compassion and kindness that I have witnessed over these last few years with Elise. Speaking of this constant love that is best exemplified by Jesus, one of my favorite church hymns reads:
 
Where can I turn for peace?
Where is my solace
When other sources cease to make me whole?
When with a wounded heart, anger, or malice,
I draw myself apart,
Searching my soul?
 
He answers privately,
Reaches my reaching
In my Gethsemane, Savior and Friend.
Gentle the peace he finds for my beseeching.
Constant he is and kind,
Love without end.
 
Where, when my aching grows,
Where, when I languish,
Where, in my need to know, where can I run?
Where is the quiet hand to calm my anguish?
Who, who can understand?
He, only One.
 
[“Where can I turn for Peace.” Text: Emma Lou Thaye. Music: Joleen G. Meredith.]
 
Of all the “constants” and “complexities” in our life—and yours—there is peace and solace to be found. Sure, there are little nudges and bumps along the path that remind of the pain, but there is peace. Constant He is and kind, Love without end.
 

​A week in the life of a very special mom:

Monday: Awake at 5:00, tried to get Elise back to sleep which didn’t work. No school so all four kids went to physical therapy with Elise then played at the park. The usual nightly routine of dinner, dishes, FHE, kids to bed after I got called out to help someone and then stayed up with me until midnight as I worked on some projects.

Tuesday: Ran 5 miles pushing Elise, then took Elise to her kindergarten screening, picked up friends for kids and talked and cried with a Mom who is waiting for an appointment in 9 months to be tested for autism. Mom (humorously to us) said, “but you guys handled all of your stuff with such grace.” That made Linds laugh. 

Wednesday: Taught piano to her students, speech therapy, girls camp meeting, worked with therapist, taught piano to Bryn and Brock, went to Brock’s baseball game, came home alone with kids as I had a meeting. 

Thursday: Ran 5 miles with Elise, equine therapy, speech therapy, Occupational therapy, took all the kids to Bryn’s soccer practice so I could attend senior night baseball game for some of our local youth.  Gathered and printed every medical bill and receipt for last year to provide verification to Idaho Medicaid.

Friday: Aquatic therapy, worked with therapist for a few hours on Elise’s communication device. Called pediatrician office to get new diaper prescription. Got prescription transferred to provider.

Okay you get the point! Little sleep, lots of work, incredible amounts of sheer awesomeness! If you were to categorize everything she spends her time doing some categories could include household tasks, driving, medical appointments, paperwork to name a few.  These categories wouldn’t be incorrect. It is, after all, what she is doing; however, what Lindsey “does” and the busy nature of her schedule doesn’t tell the whole story. What does she do? She loves. In fact, everything on her “to do” list is categorized, motivated by, and exemplifies love.  She never fails to do that first and to do that last, it is her overwhelming task, but with Linds, it is her overwhelming capacity to do it all so well centered in love. 

Lindsey feeds Elise most every meal every day, she dresses her, bathes her, runs with her, drives, hugs, kisses, cries, smiles and sleeps (tries anyway) with her. All of it centers in love. Her patient, tender caring for all of us in our family doesn’t get old for her, she continues to give constantly with the poise and patience of an absolute angel. One reason our angelic Elise was sent to us is because the only angelic match for her on this earth is her equally angelic Mother.

Happy Mother’s Day!  

Jeffrey R. Holland: “. . . no love in mortality comes closer to approximating the pure love of Jesus Christ than the selfless love a devoted mother has for her child. . . . This kind of resolute love “suffereth long, and is kind, … seeketh not her own, … but … beareth all things, believeth all things, hopeth all things, endureth all things.” Most encouraging of all, such fidelity “never faileth.” “For the mountains shall depart and the hills be removed,” Jehovah said, “but my kindness shall not depart from thee.”So too say our mothers."

​Recently I was honored to attend the funeral services for my uncle Robert DePoe. Uncle Robert had suffered for several years with a debilitating disease and for the last several years couldn’t walk. His wife told our family gathering that he would have dreams about walking again. During our family time I was also able to visit with my cousin who is dying of cancer. In a private moment I asked him what lessons he has learned from having cancer. His reply to me was that he knew that God had a plan for each person and if we can accept that plan we can find happiness, but to always remember God is in control.

During our visiting, I reflected on my Grandpa’s death (1988) and told my Dad I remembered exactly what he was wearing and where we sat in the chapel at that funeral. Though I was five, I recall those events perfectly. My tender father, seeing how much I was crying allowed me to sit between him and my mom and I cried as he put his arm around me. Since that time I have been thinking about death, healing, and faith. In our own situation with a special needs child, occasionally, because of our religious beliefs, some ask if Elise has ever had special prayers or blessings invoking the power of the priesthood to heal her. The answer to these questions is quite personal; nevertheless, the answer is yes. Similarly prayers, blessings, fasting, etc. have been a part of every family who has a loved one suffering.

The nature of healing is really subsidiary to other elements of being Religious. A caring father once explained, “Our family’s faith is not dependent on outcomes.”[i] This statement is true for me. Similar to Daniel, when explaining that he would not act contrary to God’s will even if it meant certain death. Daniel and his brothers were so certain in God’s ability to save them they responded: “If it be so, our God whom we serve is able to deliver us from the burning fiery furnace . . . but if not, be it known unto thee, O king, that we will not serve thy gods . . .” (Daniel 3:17-18). Their faith was not dependent on outcomes. It was faith regardless of circumstance.

Sometimes death, suffering, and yes special needs children can seem arbitrary, unjust, and even faithful people sometimes ask why? Or why me? I have learned from our circumstance that asking why (which I have done) is rather fruitless. The answers to that question are really quite limited to very few responses. Each boil down to God’s desire to give us experience and because we live in a mortal, difficult world. Instead of asking why, Richard G. Scott suggests:

So Elise isn’t healed and to some extent our hearts (really everyone’s hearts for some reason) still are not healed completely.  But what are we to learn?

In the process of moving from why or why me? And asking what am I to learn?  I have actually learned something special about special needs—including my own. Is my faith based on outcomes? Do I have faith to heal or be healed? Do I have faith not to heal or be healed?[iii] Additional questions such as, “Why is my loved one not healed, while someone else’s is?” In my family, I wonder, “Why did my Grandpa die of cancer and yours was healed? Why does my daughter have special needs and yours does not?” And specifically I have struggled wondering what does it say about my faith and testimony if combined they don’t warrant healing?

As I read the scriptures I came across some verses about healing that really caused me to struggle. They said: “. . .  he that hath faith in me to be healed, and is not appointed unto death, shall be healed. He who hath faith to see shall see. He who hat faith to hear shall hear. The lame who hath faith to leap shall leap.”[iv]

These verses seemed almost mocking. In a way I interpreted them saying to me: “Hey if you just have a little faith it will happen—it’s that simple. Need to hear? Well, just get some faith and then you’ll hear. Need your daughter healed of special needs, just get some faith, pray a little, and it will happen. And if it doesn’t, well there must be something wrong with you, because it all seems pretty simple here. Need to walk? Get some faith and you can leap.” Now that isn’t exactly a prophetic interpretation of those scriptures—but honestly—it is how I felt. In my own head I responded to those verses, “Well, I guess I just don’t have that kind of faith. I guess I just don’t quite cut it in this whole Christianity thing than do I? Obviously I’m the problem, and my daughter suffers because I can’t muster up enough faith.”

Those feelings were so real. When doctors can’t seem to help, when hundreds of hours of therapy seem to make very little difference and you’re the dad and you’re supposed to fix things and solve the problems, I guess I was the problem. I couldn’t do it. Now, I do understand the role of God’s will and timing in our situation and in all similar situations. His will pervades and permeates all of it. Nevertheless, I still felt so hopelessly responsible for not being capable of having the kind of faith to make miracles.

​Then, as sweet experiences in the scriptures usually do, I was prompted to continue reading. “And they who have not faith to do these things, but believe in me, have power to become my sons . . .”[v] I can’t explain the feeling or the tenderness of that verse very well. But to me, it was God saying to me, “Ezra, it’s okay, you don’t need that kind of faith. Even if you don’t have that type of faith you can still have power to become my Son. You can still be with me, you are still worthy enough, you are still my Son. You need faith to come home—not to heal.” I get a little teary eyed when I think of those verses. You see, faith to heal isn’t really part of the picture. I don’t need faith to heal, but the faith to believe. For whatever reasons, I really don’t have enough faith or it isn’t God’s will for Elise to be healed, and, I’m okay with that. I hope I have faith enough to believe.
In whatever special struggles occur in life, whatever special needs arise, faith to believe is the type of faith God cares about. No wonder “. . . to some it is given to have faith to be healed; and to others it is given to have to heal. And again, to some is given the working of miracles.”[vi] Notice it is for some—a select few. Contrast that with “For God so loved the world, that he gave his only begotten Son, that whosover [anybody] believeth in him should not perish but have everlasting life.” It seems the faith to believe, and I might add regardless of outcomes, is the most profound type of faith any person can have. Even if I don’t have faith to heal, I hope I have faith to make it home.


[i] See Dallin H. Oaks, “Healing the Sick.” General Conference, April 2010.

[ii] Richard G. Scott, “Temple Worship: The Source of Strength and Power in Times of Need.” GC April, 2009.

[iii] See David A. Bednar, “That We Might Not . . . Shrink (D&C 19:18).” CES Devotional, March 3, 2013.

[iv] D&C 42:48-51

[v] D&C 42:52

[vi] D&C 46:19-21

 “Stript, wounded, beaten nigh to death,

I found him by the highway side.

I roused his pulse, brought back his breath,

Revived his spirit, and supplied

Wine, oil, refreshment—he was healed.

I had myself a wound concealed,

But from that hour forgot the smart,

And peace bound up my broken heart.”

-A Poor Wafaraying Man of Grief, vs. 6. Text by James Montgomery 1771-1854.


This summer we were late to Bryn’s soccer game. Late is not something I do. In our rush (Lindsey was driving) we came to a cross-walk with a round-about. The speed limit dropped to 15 mph but our mini-van speed did not drop. We quickly parked and as I put my special needs child in her stroller a person came up and snidely commented how dangerous we were driving, the speed limit had dropped, and we were going to get somebody killed. Because these comments were directed to my wife, I got a little defensive and simply said, “thanks for the information.”  


A few months later we found ourselves in Salt Lake City, Utah waiting family members in downtown. After driving for five hours from Boise, Elise was spent. Putting her coat on outside in the cold weather didn’t help . . . or the fruit snacks . . . or the crackers . . . or the chocolate . . . or water. She was simply done. We parked on the street next to some apartments and from one of the upper floors someone yelled, “Make your kid shut-up!”


Walking to the soccer fields from the parking lot in the summer and walking downtown this winter I thought of the impertinence and audacity that some people have. Who are they to tell me what to do? We have a special needs daughter—doesn’t that give us a pass? Don’t you know how difficult my circumstance is?


As I have thought about those experiences, along with a few others at the store, at church, or elsewhere I have realized that the answers to those questions really aren’t important, and, frankly, neither are the questions. I suppose there is something in human nature that causes us to jump to our own particular plight rather than think of others. Because I have a unique situation, I believed, it automatically made it more important, more deserving, and more credible than any others. In other words, I am not privy to life experience of the fellow driver or the angry apartment tenant; therefore, why should I feel entitled to a special pass or special treatment for our special needs while not allowing others the same.


Each person has a “wound concealed.” Some are more visible than others. Some heroes of mine bear the shame of the world because they chose to have eight kids; other heroes carry burdens of broken families or broken hearts. Others have tremendous capacity and potential but find themselves underwhelmed at opportunities to express or increase their talents. The concealed wounds come in the form of abuse, neglect, loneliness, fatigue, and indifference. Understanding that everyone “has a wound concealed” will help each person who has some form of special need to “forg[et] the smart” and have “peace bind up [our] broken hearts.” Simply put, by finding ourselves as the family and parents that have been scoffed and ridiculed by those who simply don’t know, I have found more patience, less judgment, and more gratitude that really has brought greater “peace to my broken heart.”

How do I love Thee?

I know February is long way away but I have a few thoughts on love.  I am not sure that pure love, the highest, noblest, and greatest emotion the human family can experience, can be characterized into five “languages” or prepackaged in logic. Love is difficult to quantify, or condense into specific, dogmatic themes that leap over time, space, and culture. It is too individualistic to be funneled through a few subjective strainers then generalized to all humanity.

Elizabeth Barrett Browning wrote a poem called “How Do I Love Thee? Let me Count the Ways.” In speaking about Browning’s use of the word how, Jeffrey R. Holland, an Apostle in The Church of Jesus Christ of Latter-day Saints, explained:

“ . . . I am impressed with her choice of adverb—not when do I love thee nor where do I love thee nor why do I love thee nor why don’t you love me, but, rather, how. How do I demonstrate it, how do I reveal my true love for you?” [i]

When it comes to love, how really is the most important adverb. Love really isn’t concerned with one’s ability to quote sonnets, purchase flowers, or write affectionate poetry as much as it is concerned with doing dishes, changing diapers, and mowing lawns. Yes there is a place for poetry and flowers; however, buying flowers without changing diapers won’t make life or love smell any better.

Another key when experiencing love is the almost absolute necessity of reciprocity. Love isn’t too much fun when it isn’t given back. Additionally, some erroneously believe the greater the love between two people allows for lower expectations; in other words, some people believe, “Oh, my parents love me so much they will understand if I break their rules . . .” or, “because God loves me, it matters little how I live my life.” Both thoughts neither reciprocate love nor understand its essence. The greater the love, the greater the demands placed upon that relationship—and that is true in any relationship.

So what does this have to do with loving a special needs child? Shakespeare said, “Love is not love/ which alters when it alteration finds.”[ii]  A genetic alteration has not and indeed cannot alter my love for her. My angelic daughter does not understand the social and cultural norms of expressing and reciprocating love and affection. She doesn’t like hugs, rarely snuggles or even understands their culturally derived significance. However, the look in her eyes, her clapping and stomping when I come home, and her gestures are genuine and divine.

So, Elise, how do I love thee? Well, it’s more than changing your diapers—though that is part of it—it is more than feeding you every day—though that is certainly part of it—it more than tickling and singing with you at 3:30 in the morning when you wake up because you don’t realize it is the middle of the night —yes it is even more than that. It is a bond forged through an alteration. A genetic alteration hasn’t altered my love for you Elise, it simply alters the opportunity, methods and demand through which I can express it to you. 


[i] Jeffrey R. Holland, “How Do I Love Thee” BYU Devotional  15 Feb. 2000, speeches.byu.edu


[ii] William Shakespeare, “Sonnet 116” shakespeares-sonnets.com