Someday You'll Need to Hear This

It's late. I cannot sleep. I have not blogged in months. But here I am. I can only conclude that the thoughts racing through my head tonight need to be recorded here.

One year ago, I spent tonight packing. Packing for Philly. Packing in silence next to my husband who knew better than to try and tell me everything was going to be fine. Packing to take my son to a surgeon that could help him. Save him.

I am not a terribly sentimental type and typically try to avoid commemorating strange anniversaries like this one. However, I think it has taken me a full 365 days to really understand the impact of our time in Philadelphia and how it changed our lives.

We are all a little emotionally scarred. A little jumpy. A little quiet. A little reverent about last July. Truth be told we'd delete it all if we could. And truth be told we'd do it all over again if we had to. I only partially understand the miracles that were made ours just one year ago. And I am ashamed to admit I have spent the last few months losing sight of those miracles.

McKay is busy. Growing. Hilariously funny and affectionate. He is also still quite silent. We have engaged speech therapy for nearly a year now without success at verbalization. Over the last few months suspicion has grown that more may be going on with our little man. His therapists have shifted from believing that Mac's lack of speech requires treatment of an understandable delay, to a belief that his inability to form any semblance of a purposeful sound is likely a symptom of a potentially larger developmental diagnosis.

Now it's still early. The jury is still out. And we have at least half a dozen appointments and evaluations scheduled with various experts between now and September, so I will avoid speculation. What I know for sure is that all of the talk and referrals and inferences have sent me into a bit of a tale spin. And I've been angry, very angry about the prospect of any more long term challenges for Mac. ENOUGH is ENOUGH is ENOUGH.

I've spent a good two months now feeling angry. And you know what? Being angry is exhausting. It takes a lot of energy and produces crap. Crappy relationships, crappy feelings, crappy progress to nowhere you ever wanted to go anyway.

So I prayed (for the first time in a while) to be done being angry. I prayed for understanding. I prayed to regain a vision of McKay and his purpose and the destination of our little tribe. And you know what? I received an answer. And this, I suppose, is what I need McKay to know someday --

I sat in church on Sunday and listened dutifully to as much of the meeting as I could in between trying to keep my boys entertained and fed and quiet. And then a speaker stood up to share his testimony that does so often --an adult special needs child of an extraordinary couple in our neighborhood. I do not remember a word he shared, but I was overcome with the assurance that he was perfect. He was leading the life that was meant for him. And he was happy. I smiled -- right out loud. I believed I had received an answer. I am supposed to be at peace with whatever McKay's journey will be. Okay, I get it. Thanks God. Sign me up. I'm ready to re-enlist.

Later that afternoon I ran into the man and his mother in the church parking lot. I planned to introduce myself and explain a bit about McKay and the answers I was seeking that day. I planned to thank them for their example. But I was quickly stopped short after sharing my name by the man who grabbed my hand and said very matter of factly, "I shared my testimony for your son today. For your son."

The tears were instant. I sobbed. I tried to explain my emotion to the mother. But the son just grabbed my shoulders and pulled me in for a hug. "For your son, for your son," he said over and over again. And I knew this was more than an answer to my prayer I somehow retrofit to make myself feel better. This was a straight up Answer with a capital A. God is aware of my sons. He is aware of my anger, my hurt, my marriage, my family. He is constantly, caringly, overwhlemingly aware.

So there it is. I need to remember 365 days from now and 365 years after that, that there is purpose and plan in what seems a chaotic mess when I let less than divine feelings take over. There is much work ahead. But I know now that it is necessary work. Work that will take us somewhere intentional, no matter the outcome.

"Always we hope someone else has the answer. Some other place will be better, some other time it will all turn out well. This is it. No one else has the answer. No other place will be better, and it has already turned out. At the center of your being you have the answer; you know who you are and you know what you want." ~ Lao Tzu

And what I want is happy children. A happy home. And children with memories of a sincerely joyful mother. That much is in my control. Praise God for his patience and generosity in moving my feet to a better view.

Peep

After nine months of speech therapy, we have a peep -- sort of. This will be more of a skimming than a deep dive, but there is progress to report so drum roll please...

Mac continues to refuse, abstain, find irrelevant or pointless any attempt at verbal communication. But miracle of Easter miracles, McKay made the sign for "eat" while handing me a package of marshmallow peeps from his basket on Easter morning. I was so surprised I had to confirm with Matt that he had just seen the same thing I had -- McKay's tiny fist coming to his lips to make the sign for eat while handing me the candy. And while I asked, the stinker did it again. And again. He was becoming increasingly agitated with our lack of response to the request, so in spite of the fact that it was 7:3o in the morning, I ripped open the sweets and handed him the sticky little bird. He smiled, did a little happy dance and then proceeded to carefully lick the prize.

Since that surprise Sunday, signs for "more," "please," "baby," along with his versions of "cereal" and "cracker" have all made their way onto the scene. Some very thoughtful and aggressive "yes" and "no" head nods when we ask "this or that" have also proved helpful.While not quite enough tools to have a conversation, the signs are meeting some basic needs. Not the least of all answering the growing concern that he is indeed capable of imitation and a communicative exchange.

It's time to seek some more complete answers and we've lined up a team of additional specialists to add to McKay's support system. We'll be making our initial visits over the next week and hope to be encouraged by new learning, strategies and resources for our guy. Because although Mother's Day with three little men was just about as sweet as it gets, there is no getting around the heartache of still waiting to hear McKay's voice holler "Mom!" like any proper two year old misfit should. We know he's got it in him, we just need to find the right way to bring it out.

Promises

It's 10:30pm and I just stepped off the treadmill. I promised myself 4 miles today -- a promise I thought I'd lead off the day with at 5:30 this morning. Today, however, life had other plans. Namely a two year old who screamed inexplicably for most of the early morning hours. Regardless, no one is crying now and all of the day's promises have been kept.

Indeed, wonderful promises have managed to find their way into our lives over the past few months.

My Ty-guy turned 8. EIGHT! We did it up right with a party at the Lion House in Salt Lake with a few of his buddies. They played pioneer games, made their own taffy and wore coonskin hats throughout the entire shin-dig. Heaven.

The actual birth-day soon followed the party weekend and Ty awoke to his first concert ticket to see his favorite band - Bon Jovi. (Lucky for us, no?)

Brothers joined in the gift-wrapped excitement of that evening's family festivities. (It's a rare, fleeting and wonderful thing to see these two get excited for each other :) Ah, brotherly love. Let's hope we can all survive it.)

In our faith, turning eight also means reaching the age of baptism.

More mugshot than portrait, I think every good Mormon kid has a photo like this one so I had to include it in the remains of the day. As with the less than stellar family photo below-- Preston was none to excited to be having ANOTHER day focused on his big bro. Three parties in one month is great for the birthday boy, not so great for the little brother. The baptism ceremony was the straw that broke the camel's "what about me" little back. Luckily, his birthday followed soon after.

Baptism day was celebrated with another perfect cake from Aunt Hilary and Uncle Ron. Seriously great cake--inside and out.

As part of Ty's first real right of passage, he also received his first suit. A gift I was unsure would excite him until we took him for his fitting. The three-way mirror and Dave Matthew Band dressing room tunes was a combination that unleashed an inner fashionista. He was so pleased with the way he looked, the tailor could barely get him to stop shaking his money maker long enough to mark the cuffs. I was smiling so hard my face hurt. Good, good day.

So to the little man who made me a mother, please know that watching you grow up makes my own aging worth it. You make me more proud with every day. Thanks for being our unending chatterbox, idea machine, third parent, and heart of gold.

Now, for Preston. The count down to Preston's birthday usually begins immediately following Christmas. And he is eerily accurate with his numbers right up to the day of celebration.

This year, our six year old magic man enjoyed an afternoon of tricks and surprises all his own.

A real magician, live animals, 15 friends, candy, candy, candy, and a house full of adoring grandparents, aunts and uncles. What more could a kid want?

Well, maybe to lose his first tooth. FINALLY! Although the newness of the moment has him looking a little nervous in the picture below, he was thrilled.

Life continues to be good here. Our kind of good, but good. We are still trying to figure out and understand our silent Mac, but there have been a few breakthroughs --

He now grabs at our hands with authority and leads us to the place or object of desire. HUGE improvement over what seemed like random tantrums. At least now we know the vicinity of his want or need and we've become pretty great guessers.

He has also started to sign a very little bit. The routine goes something like this: After leading me to the refrigerator and forcefully placing my hand on the handle, I say "Open?" and he returns the question with a look of "Duh!" and I open the door. He then giggles, shimmies his way into the fridge and starts pumping his little fists open and closed, making the sign for milk. It's really the only thing he drinks these days so we know what he wants when we land outside the refrigerator door, but progress is progress. And I'm taking out my chalk and marking this little sign as point one for the good guys.

Many of our heart friends are gearing up for Fontans in the coming months. Much love to all of you sweet babes and the brave moms and dads who will see them through. I sometimes marvel at the fact that the Fontan hurdle is behind us now.

We received a surprising 7:00am phone call from CHOP earlier this week, the hospital where McKay had his Fontan last July. Nothing good is on the line when the phone rings that early. Someone is hurt or the carpool is about to fall apart. My intuition was right -- It was a researcher hell bent on convincing us to come back to CHOP for an all-expense paid poke, prod and MRI visit. They are studying blood flow in the brain of single ventricle kids pre- and post- Fontan. While we signed up for three research opportunities during our stay, we considered but decided against this particular study for the extra sedation, needles and radiology required to participate. Weave your needs into a regularly-scheduled procedure, sure. But require a separate event to participate? No thanks.

I'm not sure if that makes us bad citizens of the heart community, but it took us all of about 15 minutes to reconsider the request and thoughtfully decline, again. We're just not ready to go back to Philly just yet. Instead, we need to be home. Home to have a normal summer of sprinklers and popsicles and mastering two wheels. It's coming, I can feel it. It's snow today, but it will be sunshine tomorrow. Baseball tryouts are Saturday; bring on the boys of summer.

Orange

These two may not say much, but they know how to enjoy a Friday night.
(Mac and his girl Sarah after some pool-time fun on a recent weekend getaway.)

Tomorrow night's class will be week 5. Week 5 of our commitment to the Hanen speech therapy courses. Week 5 of grandma showing up to run the show for a night while I steal away to sit on a folding chair in a u-shaped configuration of plastic tables from Costco with 15 other parents whose children are in some stage of silence as well. Week 5 of becoming painfully aware of any and all little things we might (or might not) be doing at home to enable Mac's mums-the-word attitude. The truth is that four months into speech therapy and five weeks into Hanen training, Mac still doesn't say a dang-darn thing.

To be honest, the focus of the Hanen program surprised me. I expected to show up and learn techniques for teaching McKay how to be a communicator. But instead, the spotlight was turned big and bright on all of the little things I might not do well - letting him lead me in play, getting on his level when I talk to him, waiting, waiting, waiting for him to answer me. Was I the problem? Oh, please let it be that easy.

As the hours of the first course passed on, I could feel myself losing it. While I pride myself on being decently self-aware that I have not dealt with much of anything that goes along with the grab bag of emotions I've kept securely stowed away for the past two-plus years, this class blindsided me. The dam was about to spring a leak and it was time for me to leave. As class wrapped up, I promptly ended a conversation with one of the leaders and high-tailed it to my car. Crap. This wave of emotion was going to take more than a few deep breaths to scare back into hiding.

I called Matt. I was sobbing and hardly coherent. Of course he doesn't talk, I half yelled through the phone. Why would he? We have effectively ignored him every time he told us, no, or stop, or that hurts, or I don't want to swallow that medicine, for his entire life. At what point does being held down, comforted through lies that everything is going to be okay and then put back through that entire experience again and again, start to shut a little soul down? Forget the speech therapy. This kid will more likely need a slush fund for some serious counseling through the years. What have we done to him?

I cried for a solid hour. Very, very rare. Maybe the first time ever. No. No. No. Not now. Shut it down. Shut it down NOW.

As the classes have progressed, as we've been videotaped interacting with him and, along with others in the class, volunteered to have our homes, children and most tender worries put on the big screen to be tested against the criteria for parents who successfully encourage speech, I remain pretty raw about the whole situation. I continue to struggle through some of the 'why' of McKay's silence. Is it fixable? Will he always face an uphill climb when it comes to language or academics or life in general? Why can't something, anything be easy for this kid?

I know - he's two and a half and I'm being a bit dramatic. But it's where I'm at right now.

I am also to the point where I realize that the only thing I can change is me. The rest is up to Mac and God. And maybe that's what this entire Hanen journey is all about -- reminding me that whatever the issue, I can only figure out the most positive and productive things that I can do to bring opportunity to the situation and continue to do that -- over and over and over again. Whatever the situation, whatever needs changing, your child, your parent, your neighbor, your spouse, we can never change someone else. We can only change ourselves. So that's what I'm working on right now. Changing my patterns. And it's brought some unexpected blessings.

I've realized that I'm not as hungry for words as I thought I was--I'm hungry to connect. McKay and I are bonded, permanently. Forever. And ever. And ever. But it's the day to day connection of knowing what he wants, learning his favorite color, animal or book--that's what I really want.

Little by little, I am getting a bit more of that now. In the past two to three weeks, we've had a lot of eye-to-eye conversations and somehow I think he's understanding more. Just today I came home and laid on the floor next to him and we held our hands up in the air, counted fingers (he pointed and I filled in the blanks), I said 'yea' and 'clap.' And he did. He put his two chubby paws together and clapped. He laughed and I felt happy. Simple, simple, simple moments.

And then I remembered, it's orange. He always chooses orange first whenever we open the crayon box. Orange circles, orange lines. Words or none, I know this kid. And we'll find his voice soon enough.

Waxing Philosophical

"Hope begins in the dark, the stubborn hope that if you just show up and try to do the right thing, the dawn will come. You wait and watch and work; you don't give up."

ANNE LAMOTT

I've been thinking a bit about hope lately. The nature of hope. The idea of hope. The why, what, and when of hope. When is it okay to hope? When is it foolish to hold onto it? This may turn into a bit of a ramble - but it's something I need to capture. I invite you to bear with me or don't -- this one is for me.

I'm certain hope is on my mind because 2010 has been a year of hope for our family. Hope for goodness in the unknown. Hope that we made the right decisions. Hope that tomorrow would come and the next day after that and we would all still be here to welcome it -- together.

Of course, we did not rely on hope alone. Hope is no substitute for preparation. You inform yourself, you research, you connect and confirm, and you pray. And when all that can be done is done, when all of the decisions that can be made are made, you invite hope to sit beside you and you take the journey. There is no avoiding the journey.

Hope was the fuel we relied on when we were running on empty. It filled us up and set us straight; hope offered direction and focus. Hope became the energy we took in and passed on to our family, our doctors, our children. It helped us to see beyond now to tomorrow, to better. Hope helped us create a vision we worked to realize. There is no avoiding the work.

Our every hope has not yet been realized. Our family still operates a degree or two east of normal, but we are here. Together. And in that there is hope. Our dreams and wishes and hope continue to invite possibility. Amazing, unexpected possibility.

Hope is light. And no matter how many shadows you must pass through to find the light, you walk because you have hope that it will be found. A wise and dear friend said, "Light and shadow bring depth into our being." I love that. I feel that. I aspire to understand that truth more fully. Indeed, if 2010 was a year to connect with and understand the power of hope, I walk into 2011 full of intention to invite light into every corner of my life. More light. Less shadow. I think that's how it works. And somehow I feel that although I cannot control the timing or depth of the shadows, I can control the light with which I meet them.

Vague - yes. Ethereal - probably. But that's the great thing about personal truths and growth - they are your own to ponder and understand. Your own. Embrace yours.

The Silent Treatment

Mac and Maui were made for each other.

Hey there friends! Yep, still here. Still happy. Still trying to fit it all into the day. Still falling short when it comes to maintaining our little journal of adventures here. Since Mac has become more mobile, leaving all of his tubes and troubles behind for now, we've been on the move. But today it's not about getting caught up on Halloween, or Thanksgiving, or an impromptu trip to see Mickey or Maui. I hope and plan and have committed to update over Christmas--really. But today, I need your help.

After three months of speech therapy, McKay has nothing to say. He's becoming increasingly frustrated with our communication routine (or lack thereof) and has starting hitting and biting to make his point. Not so fun.

I'm signing. I'm repeating words and short phrases at nauseum. We're watching all the language videos. Reading books. He's going to nursery where he can see and hear other kids speaking and singing. He'll start a special preschool program in January to augment his opportunities for interaction. Grandmas are on board. Aunts are on board. Babysitters are doing the same. The poor kid probably thinks you have to say everything five times to be heard. And yet, nothing.

This week our speech therapist has recommended we commit to a speech development program called The Hanen Program. Have any of you experienced this program? It's an extensive on campus education program about helping children communicate. Please say someone out there knows something about this! I need to know if this is something that will be worth our time. The time commitment is, well, a big commitment. Not so bad if I can take Mac with me after a day at the office and we get to focus on him for a few hours, but this program is just for parents. No Mac. Just mom. I can't love missing an entire night each week with my boys. I can't love that I won't be actually coaching him through the process, but sitting in a classroom discussing whether or not McKay is better or worse off than all of the other kids whose parents will be there too. Is that selfish? Am I being short sighted? Bad attitude? Seriously - tell me.

So here's the plea -have any of you experienced speech delays with your kids? Have any of you after taking a truly hard look at whether it's you that has enabled that delay and changing your ways, still been frustrated by your child's seeming disinterest in language, imitation, sign or anything that has to do with communication? What did you do?

Don't get me wrong. McKay plays, he dances, he follows some directions, he seems to understand most things we tell him, he loves, he kisses, he squeezes and problem solves. But he does not speak. He is 28 months old and has no words. And everyone seems to think that's a bad thing. A really bad thing.

Part of me wants to believe that it's okay. He'll make it up. He'll figure it out. But professionals who study this topic seem to be worried or puzzled or fascinated by it. And that gets me to worrying too.

So that's it tonight. Nothing particularly cheerful aside from the picture of Mr. Mac at his favorite fountain on our latest search for some sun. Just a mom who's been silent for a little too long searching for some answers for her son who seems perfectly content to enjoy the silence. Please, speak up. We're listening.

Dream Big

If no news is good news, I guess you can assume we’ve been living a whole lotta good news over here.

The last few months have been a breath-holding, too-good-to-be true, waiting-for-the-other-shoe to drop (but-it-didn’t) exercise in trust. Trust that the doctors did exactly what they said they did. Trust that the repairs would hold. Trust that Mac’s body would handle the changes well. Trust that we would be able to tell if anything was going wrong. Exercising that kind of trust can leave you exhausted.

But yesterday, we received confirmation --confirmation that everything is going as well for McKay on the inside as it appears to be going on the outside. The docs directed us to stop all of McKay’s post-surgery meds one week ago. They wanted to evaluate him on his own merits – no assists, no intervention. And our drugless little wonder could not have been better. Aside from a liver that seems slightly enlarged due to a change in pressures from his new plumbing, McKay received a clean bill of health yesterday.

After the exam, x-rays, and tests we did something the doctors have never done with us before-- we conferenced about the coming years, not months. We talked about the importance of social development instead of prescribed isolation. We talked about the possibility of him going years, even decades without another surgery. We even talked about signing him up for the four-year-old soccer league when the time is right. I never let myself plan, dream, or envision anything that far ahead before yesterday. Permission to dream for yourself is empowering, permission to dream for your child is transforming. It's a concept to which I'm still happily adjusting.

We're not completely out of the woods yet. Mac still has a way to go before he’s up to par developmentally. He still has no real, recognizable words. We give him generous credit for nie, nie when he wants to get into bed and I thrill each time I request a kiss and he delivers, but it's a long way from effective communication. A speech therapist now visits us three times a month and we’re working on some simple signs and animal sounds. The progress is slow, but there is progress. Just this week he has started to make a "mmm" sound when he sees a cow, seemingly trying to spit out some semblance of "moo." Progress.

Some have told me to expect a month of developmental delay for every minute they shut McKay’s system down entirely – every minute he was technically “gone.” For McKay that time totaled 29 minutes, 29 months. The child is only 26 months old. So technically, I guess we could say he’s doing better than expected. I really don’t know what to think, I only know how to feel. And I feel grateful.

I am so thankful it overwhelms me, stops me, and causes me to see everything in life in new and glorious ways. Everything. I've been given the chance to dream, to hope, to imagine futures for all of my children. All of them. And you know what they say – if you’re going to dream, dream big. Watch out big, wide world. Mac is here to stay.