Saturday, April 01, 2006

Mitchell's Diagnosis (July 2005)

July 11, 2005

Dear Family,

Just this Monday our son Mitchell was diagnosed with Duchenne Muscular Dystrophy (DMD). We had to hear it 3 times from our doctor before we began to understand what that disease is and what it does to the body. We are devastated, bewildered, sad beyond words, and scared.

The prognosis so far is that Mitchell will be in a wheelchair within the next 4-5 years and this disease will eventually take his life by his mid teens. DMD is irreversible, progressive and it is terminal.

What is so difficult for Natalie and I is that unlike cancer where patients can often go into remission with treatment, his disease will progressively and methodically get worse. There will be no breaks for him. His muscles and body will atrophy and deteriorate and as this happens he will experience a myriad of other physical complications until it takes his life. What we are hearing is that he probably only has a few short years before we notice a marked decline in his physical abilities – which are already stunted because of his condition. Today, knowing what we know (after seeing the doctor), we see some of the things he does with a different perspective - and we are now recognizing what were before silent indications that this disease was already taking grasp on his little body.

As we prepare for Mitchell’s gradual physical descent, we sit on the edge (as it were) of a dark and lonely abyss . . . frightened and trembling . . . not so much for ourselves but for Mitchell. And while there is a long journey ahead for my family (especially for Mitchell) . . . he will go places where we will not be able to follow – but we will be beside him and behind him . . . holding him, loving him, kissing him, and cheering him on. And at some horrifying point, he will comprehend that this progressive disease will take his life. And at that moment, he may be like I am today, trembling at the knees and breathless – bewildered by what is before him – and scrambling to find a way out and a hope for a cure. I hope and pray I can be strong for him – but today I am a jellyfish.

Something happened a few years ago and I don’t completely understand why . . . and I suppose in time that it will be revealed; but, since the day Mitchell was born, I have had a recurring and persistent impression that his life on this earth would be short. This feeling came long before this devastating news about his disease – and when we had no reason to believe such a thing. Over time I told only a few people about this impression (Mom, Natalie’s parents, my wife, and a few close friends – I even remember telling some of you). But for reasons I don’t completely understand at this point – I had this persistent uneasiness about him. I now see (at least) that our loving Heavenly Father wanted me to know something was wrong. And indeed – something is. He warned us . . . in effect prepared us to some degree. And if He did that, He will also carry us places we don’t have the strength to go ourselves.

We will teach Mitchell (and our other children) about the Plan of Salvation and the love of our Savior of Jesus Christ and foster an environment where his testimony will flourish. And as he confronts the reality of a short life on this earth – we want him to be prepared for the next life. And that will be the greatest gift we can give him.

We love our little boy – so very much. And while Natalie and I are in the wake of every parent’s worst nightmare – we will eventually learn to stand tall for him and be a guiding light as he navigates a short and difficult life.

I am grateful to have learned something of the Atonement – and while I have much to learn about that sacred topic, I know enough about the hope it provides to keep from sinking.


Love Chris & Natalie



This is a photo of Natalie & my son about 20 seconds after the neurologist told us about Mitchell. We were still in shock.

















Reflections on Family . . . March 2006

Laura-Ashley, is growing more into a little woman teen every day. Her social life is becoming more important to her, she is testing her boundaries at home and school (and this is slightly stressful to us - as her “testing” gets her in trouble), and it is clear to us that we are entering a new phase of parenting. The other day I told Natalie that while we still have Ashley, we no longer have “all” of her heart and mind. I suppose the phenomenon of having “all” of your child is a short window somewhere between the age of 0 and 5-ish. After that short window our children’s interests and distractions grow – their friends and activities will begin to consume and shape them in ways over which we have little control. And we will become increasingly less relevant and quite possibly perceived as a hindrance to their youthful teenage ambitions. And in Ashley’s case, even when her love and attention comes full circle . . . after she begins to have her own family . . . she will never be quite ours the way she was just a few short years ago. Her husband and children will naturally and rightfully be her priority. Undoubtedly, our love and bonds with her will grow, deepen and mature over the years, but in many ways she is kind of like a helium balloon we are taking to the park to release into the vast blue sky . . . and while we haven’t let go of the string, it is slipping away ever so slowly by the winds of change.

No need to read too deeply into this, and no, I’m not obsessed with tomorrow – only curious. I am very much living in today with my family. But when I think of the future I feel compelled to live more fully in today.

About a week ago Sprucewood Elementary hosted their quarterly “Daddy/Daughter Doughnut” party. It begins 45 minutes before school starts and all the fathers and daughters pile into the gym to eat pastries and read books with their kids. I have enjoyed going to this with Laura-Ashley over the last year or so, but this last time was especially fun because I got a glimpse into her social life. When we arrived Laura-Ashley took me by the hand and insisted that we walk around the gym/cafeteria and look for her friends. As we did this she was greeted by all kinds of friends. These little girls would drop their bags to the floor and come running to Laura-Ashley and give her an enthusiastic hug. Ashley reciprocated this enthusiasm and love toward her friends – which is one of the reasons I think she is so popular – she makes people feel important. It was fun to watch her interact with others.

Her growing popularity is a challenge in the most interesting ways. Her teacher and the recess aids tell us that they are concerned about the example Laura-Ashley sets. When she misbehaves, so do all her friends. She is a powerful little leader. So Natalie and I recently had a long discussion with Laura-Ashley about the difference between good and bad leaders. She seemed to understand where we were headed and agreed to be more careful with her choices. We are also encouraging Ashley’s teacher to not only point out Ashley’s youthful deficits but to play an active role in helping her be a successful, positive leader. We expect nothing less from her teacher.

Every day after school either Natalie or myself will wait across the street by our old home to pick her up (because the bus routes don’t go to our apartments). We patiently watch Ashley with her friends hang out under the same tree and talk about . . . . boys, gossip, and the secrets only little girls keep. Without fail, this is their daily routine. And after about 7 minutes of loitering under the tree watching waves of children walk by, they will disperse and Ashley descends from the hill in her pink, grass-stained pants with rainbow stripes on the side and comes quickly to the car. It is only then that she begins to dig into her lunch pail to eat the lunch her mother lovingly made earlier that morning – it is clear that she spends all of her lunch time socializing. That makes us smile inside.

I love the relationship Ashley has with her mother. She confides in Natalie about everything. I don’t think there is a single thing in this world Laura-Ashley wouldn’t tell her mother. I marvel at how Natalie works with her.

Ethan, has become quite fond of my Nova, National Geographic, Science Channel and History Channel documentaries. He enjoys sitting by me watching them on my laptop more than he appears to enjoy cartoons or star wars. Last week he learned about Super Massive Black holes (which are fascinating), yesterday he watched a documentary on Catastrophic Geologic Events, and today he insisted on watching a video on String Theory (and he watched the entire “Stweeng Fearwie” video). While much of it he doesn’t understand, he remains strangely attentive and riveted. Later in the day he’ll draw elaborate pictures on paper reconstructing what he saw and understood. It’s quite fun to witness. He is surprisingly good at retaining the high points and reducing the concepts he understands to pre-school art.

Ethan always has a pocket full of giggles. We love the random and often frenetic energy he has. For him there is always something to laugh about. Lesson learned.

Lately Ethan has been playing with Mitch like you’d expect little brothers to play. We often hear them giggling in the other room rough-housing and making a mess. That doesn’t bother us – in fact, we enjoy hearing their chaos.

Ethan is into playing star wars music on the stereo and building elaborate contraptions out of string, tape, and blankets to catch “bad guys”. At any moment, Ethan could start to construct some of the most amazing things.

I would be remiss if I didn’t mention Ethan’s fascination with my camera. He loves to take photographs with it. I have taken him with me to some work-related film shoots before and while I’m supervising the filming of an event/project, Ethan will be running around with my very heavy SLR and take photos of everything he sees. He used to just run around and shoot everything he could click at, but now he dresses up his shot before he takes it. He’ll be quite a photographer with some more practice and schooling. For his 8th birthday, we are going to get him his own (basic) digital camera as that will be something he’ll be quite familiar with by that age. Already he knows how to download images and see what they look like.

At night, I always go into the kids room and kiss each of them when they are sound asleep. Ethan’s temperature is always 15 degrees warmer than the other kids . . . to the point of sweating . . . I wonder if it’s because he’s doing crazy things in his dreams.

Speaking of crazy, over the past several months, Ethan will get out of his bed on occasion in the middle of the night and walk around the house giggling and talking to himself. He is sleepwalking to be sure, but what its what he does while he sleepwalks that has us scratching our heads . . . a few times he’ll walk into Natalie’s closet, or in the living room and pee on something and will giggle all the way. We in shock and awe try and wake him and talk some sense into him but he will never connect with us mentally. We put him back in his bed and the next morning we’ll ask him if he remembered anything from the night before and he’ll say no.

Strange kid.

Mitchell is doing well in school. His teachers indicate he’s already met his goals for the year and that they are revising them to keep him challenged. This is a good thing. I’ve been blessed to take Mitch with me to work on occasion. He’ll sit with me at the conference room table while I’m working with my contractors on various projects and Mitch will just sit there coloring, playing with toys, driving cars on my chair and arms, or playing games by himself very quietly. He is quite considerate of his surroundings and is careful not to be disruptive. From a distance it may not sound like a nice thing to do by cooping him up at an office for hours at a time. But Mitchie asks me if he can come to the office and he is so enthusiastic about it. And when he comes with me I’ll bring a sleeping bag and pillow and we’ll make a comfy fort under the table and surround him with toys and things to do. It is so much fun. Sometimes I’m tempted to call all my meetings off and spend the entire day making forts with him. I am not convinced that age will diminish my desire to become a kid again.

After my meetings I’ll often take him out to lunch and we talk about kitties and the blanket forts we’re going to make when we get home. He is growing up much too fast.

Yesterday, Mitchell gave his first talk in Sunday School. It was so cute – and yes, I recorded it. He whispered about ¼ of the talk into the microphone and Natalie carried him the rest of the way. We were both so proud of him for just being willing to stand at the pulpit.

Mitch has become quite adjusted to having a new baby in the family. At first he seemed a little hesitant – and perhaps wondered who this new intruder was. But Wyatt has become a unique part of Mitchie’s identity. Mitch loves being an “older” brother and he reminds us of this almost every day. In the store, Mitch will point out things that belong to “baby’s” and he’s proud that he is no longer part of that fraternity.

But the world is still a very big place for Mitch. Several months ago I was waiting in the hall between Sunday School classes to make sure Mitch was doing okay. As the kids were moving from the opening exercises room to their class rooms, a torrent of kids were shuffling through the hall. I saw Mitch by the door with tears welled up in his eyes and his little bottom lip begin to protrude. He fought his tears bravely but remained still. I am sure that to the other kids, everything was normal and they were simply negotiating this human traffic jam without a second thought . . . but to Mitch, that experience was frightening. He knew how easily he could be pushed over and I saw that he was quite concerned about his well-being. I came over to him and he looked at me in the eyes with a yearning for safety. I reached down and held his hand and he found the strength to enter the swift river of people. When we got to his door, I hugged him and told him that everything was okay. I don’t know if he believed me, but I would like to think that he did.

Ethan and Mitch have school on different days this year so the rotation gives Natalie a chance to spend some one-on-one time with each of the boys. She has said on several occasions how much she appreciates that individual time with them.

Parenting Mitch will be an interesting journey on many levels. We want him to be strong (at least emotionally) and to do this you sometimes have to let go and let them figure things out on their own.

Wyatt is getting cuter by the day. We enjoy holding him so very much. Of all our children, we think he has the most beautiful smile. We are trying to soak up the gumminess of his smile because all too soon he will start sprouting teeth and that era of baby breath and toothless smiles will be over.

On occasion Natalie will get Wyatt to laugh pretty hard by performing some funny cheer she makes up at the moment. Because this laughing thing is still new to him he kind of chokes for air as he hasn’t quite figured out how to regulate breathing and laughing. That makes us all laugh even harder, which in turn makes Wyatt laugh and choke even more. It is an endless (and possibly torturous) circle for us.

We think Wyatt will fit in quite nicely. Did I mention that he’s really cute?

Watching Children Grow
I imagine watching your children grow over time causes serious personal reflection. I have been thinking a lot about life lately – especially having gone to two funerals. It seems that with age, relevance slips. At my Grandmother’s funeral, for instance, all of her children and grandchildren mourned the loss of a great woman who fought valiantly to raise a family by herself. And when she passed away, a lifetime of memories and experience passed with her. The great grandchildren in attendance didn’t have capacity to understand what was going on; to them, it was a chance to play with distant cousins and sneak treats from the lunch room. And their generation is not likely to have the same reverence for a woman who participated in some degree to their own existence.

The phrase “gone but not forgotten” is unfortunately a platitude with a short shelf-life. There was a time when my grandmother was the most beautiful woman in her town – and all the boys chased after her. She was relevant. Then she got married and had children – and her relevance to her community / family continued and increased, however more focused. But when her children started having children, her relevance began to slip a bit. She was no longer the focal point of everyone’s lives. And when her grandchildren started having children, that new generation was too far away for them to appreciate her. Yet they are connected and just don’t know it.

The Brethren say that the Church is only one generation from disbelief. I suppose we could say the same about family history and the memory of our ancestors. The memory of our loved ones will last as long as we tend to them. Well, I suppose the lesson I’m learning is to make a difference in my children’s lives while I’m still relevant.

Natalie is my dearest friend and I am most fortunate to have her in my life. I admire how tirelessly she labors for the welfare of our kids and family. She is the consummate mother and wife.

At night, after everybody is sound asleep and I am working through some challenge for a client, I’ll stand beside her while she is nearly comatose with fatigue and kiss her sweet forehead and whisper that I love her. If there is one thing mothers know how to do, its sleep. Natalie doesn’t seem to have trouble falling asleep . . . and when she’s out – she’s out. And I know that when I am about to retire for the night, she is just about to wake up and feed Wyatt. Never once have I heard her complain (except for that incident with Ethan as an infant and I was out of town). She is a strong woman. And if Laura-Ashley turns out like her mother, then perhaps I will enjoy the same satisfaction and pride Natalie's parents must have for her.

I suppose I have Natalie's parents to thank for the way Natalie is – but I also have her to thank. She is who she is in large part to her agency – which agency she has wisely exercised over the years. She is self-disciplined and independent and is a wonderful, loving, compassionate, and grounded woman. I have much to learn from her.

While we all have pimples on our bums, she has a few less than the average folk. (metaphorically)

Wyatt’s Blessing was great. A handful of family attended and it was a sweet, short experience. The Spirit was there and we were all reminded of the great circle of love and (eternal) family to which we were a part. Evidently the Spirit of that event prompted certain apologies among some of those attending and relationships that were earlier strained were mended. It was a blessed occasion.

Our home is finally starting to get under way and we are excited to see it come together. With any luck, we will be moving in late August early September.

Last spring we made an impromptu decision to buy a chocolate lab outside Wall-Mart that was only a few weeks old. When we got in the car we were just tickled and the kids were giddy – but before we put the car in drive we started to evaluate the implications of our purchase; that we weren’t just buying a puppy that we could love and adore today, but that we were buying a rather large dog with large poops tomorrow – deciding this wasn’t what we wanted long-term, we quickly returned it to its owner and got a refund. In all our family decisions, we are trying to buy the dog and not the short term novelty only a puppy can offer. I think you see my point.

Living in an apartment has reminded us of what’s truly important – although I don’t know that we ever lost sight of that. Materialism is a state of mind – not a condition of possessions. We own our stuff - it doesn’t own us. And while we have a lot of crap in storage, we aren’t itching for it – however, admittedly, it will be like Christmas in the summer when we unpack. Yet, if a tornado or a burglar came sweeping by and it all vanished in a moment – it is only stuff. What is most important is the living, breathing bodies that live in our dwelling.

The future is uncertain – that is the only certainty. So it is up to Natalie and me to embrace our family, plan our future the best we can - hoping for the best while preparing for the worst. Natalie and I have been blessed lately – financially and otherwise. And we are trying to make calculated, forward-thinking decisions that will be in the best interest of our family – short and long term.

To the extent that we feel like we are making decisions amidst the fog of the unknown, we have peace of mind about what is happening and we can sleep at night.