Howling at the Moon

These days people are obsessed with vampires. Supernatural beings that turn into blood-sucking villains when the sun goes down. Me? Not so much. I am far more frightened by a 14-month old that turns into a newborn at the stroke of midnight. He’s literally sucking the life out of me.

I realize that mothers complaining about how little their children sleep is as old as Adam and Eve. And I KNOW she complained. After all she had to mother the human race while camping—ughh. I’m not after your sympathy, just your advice. Crying it out is NOT working. He has an especially sad and violent cry he only uses at night and if we let him go too long I prefer not to turn on the light because I know how blue his plump little lips will look. Not only that, but he can go for well over an hour and then continue the rest and cry pattern until dawn when he somehow turns all babbles and smiles as he patiently waits for us to liberate him from his crib. What gives?

The only thing that gets McKay back to sleep is more milk. I usually ration it 3-4 ounces at a time because I know he’ll be up two or three hours later wanting more. Is it really possible that it takes such frequent feedings to satiate this 26-pound hunk of love? I’ve tried giving him full bottles, but he still wakes. Seriously—HELP!

Matt has stepped in lately and taken the first waking of the night and it has helped tremendously. Only now when Mac has a particularly bad night I am out of practice and more tired than ever. I’m kind of beyond trying to solve the problem and just trying to be grateful at 2am that I have a cherub to wake me at all. Have you had bad sleepers? Did they grow out of it?

You’d think with my third I’d be seasoned enough to figure this out, but McKay is taking me through a series of firsts all his own. Thanks for letting me vent. Things will look rosier once an acceptable hour for a nice cold Diet Coke arrives. I just can't bring myself to pop the top before 10am :).

Needed at Home

I just wanted to share this remarkable young man with you. He is the son of a partner at Matt’s law firm. We spent some time this past year at Primary Children’s together. (Sadly, they were there far more than we were.) His father is an incredible man who constantly lifted us even when anyone would have excused him for being in a deep ditch of his own.

Life changes in an instant. For Chad, it was a check up to treat what seemed to be a simple sore shoulder that changed everything. Hug the kids in your life—the big ones and the little ones.

Read more about Chad here.

Not Me! Monday

I’m a decent housekeeper. I’m not perfect, but respectable. On a scale of Martha Stewart to the hoarders on Oprah, I’m about an 8. (Excluding my bathroom.) It’s a good thing too, because McKay loves to put EVERYTHING he finds into his mouth.

McKay’s penchant for exotic snack selections has turned me into quite an expert at the finger sweep. I’ve fished out paper, toys, even a leaf that drifted down onto his high chair tray during a picnic this summer and was promptly sacrificed to his adventurous appetite. Remember the toy he managed to eat and nearly choked on when he was still a toothless six month old? He chews faster when he sees me coming toward him rubbing sanitizer into my hands because he knows his latest meal will soon be extracted. It’s both hilarious and scary.

That is why I did not COMPLETELY LOSE IT when we found McKay nibbling away on something horridly unacceptable at a friend’s vacation home recently.

We arrived late and as we went about the house turning on lights and getting the boys settled for bed, McKay was exploring his new surroundings with joyful abandon. After five hours in the car he had caught a second wind and was unstoppable.

Matt and I were mid-conversation when we turned to look at McKay and identify the unnatural crunching sound that was coming from his direction. Sure enough he had all five of his teeth hard at work on something yet to be discovered.

Matt told me he had this one and walked quickly over to Mac to pull out whatever toy he was nibbling on now. Only it wasn’t a toy.

“Are you kidding me? Are you kidding me?” Matt kept repeating.

I ran over to see if he needed some help.

“What is it this time?” I asked.

“You don’t want to know,” he said. “Let me just say that I’m pretty sure he still has a wing in there.”

“WHAT!?!” I shouted as I thrust my index finger into McKay’s mouth attempting to extract whatever was still in there.

“It was a cricket. A big, brown cricket,” Matt said.

I felt myself get nauseous.

“You mean the kind the seagulls ate?” I asked Matt. “You mean the kind people on Survivor refuse to touch until about day 32?”

McKay just beamed and continued to gnaw at whatever remnants were still embedded in his voluminous cheeks. Honestly.

Leave a known scavenger alone long enough to forage for disgusting things to eat? Not me! Feed my children bugs? Not me! Feel as though I might hurl every time I think of it. Yes. That last one is definitely me.

H1N1 Update

I just got home from taking the kids for the H1N1 vaccine. Here's what you need to know:

1. The lines are LONG--Our regular peds office does not have any of the vaccine and I was advised to get McKay vaccinated asap so I had to visit the Health Dept. clinic--and so was EVERYONE else.

2. Once I arrived, nurses there advised against vaccinating my 4- and 6-year olds with the nasal spray because it contains the live version of the virus and could pose potential harm to McKay.

3. They would not approve me for the vaccine even though I am the mother of a high risk child. If the baby is older than 6 months, mom gets nothing until the next round of vaccine is released.

4. We get to do this all over again when the injectible form of the vaccine arrives in enough quantities for adults and older children. They told me pregnant women are the next priority. If there's any left after that, healthy adults can get in line.

5. The H1N1 vaccine is a two-part vaccine for children under 9 years of age, so McKay and brothers will have to go back 30 days after the original dose to complete the vaccination. This was news to me as all the reports I heard said it was a one shot deal. For adults, yes. For kids, I guess not.

If you are considering the vaccine for your family, I thought you might like to know!

Just a bit of a soapbox if you please...

I am of the opinion lately that people spend far too much time worrying about what they (and those around them) do or do not deserve. What is or is not fair. Who should have and who should have not. Frankly, I’m sick of hearing about it.

I mean who really DESERVES anything? Do you deserve to be rich or sick or poor or well liked? Do you deserve to live in a certain neighborhood, drive a certain car, wear certain clothes? Is it fair that your business is successful while others hate their jobs? That you are able (or unable) to have all the children you want? That your marriage is happy or un-?

The truth is none of us have anything except by the grace of God. So I wonder why we don’t all start acting with a little grace ourselves.

I hear all of the chatter and bickering and round and round and round again about healthcare and I want to scream—Why can’t we all take care of each other? Isn’t that the most decent thing to do? Isn’t that the most Christian thing to do? But instead it becomes a question of who deserves coverage, who deserves quality healthcare, and fear over whether or not me allowing you access to my doctor means less healthcare for me.

This next part may be a little scary to hear, but it’s Halloween so I’m sure you’ll forgive me. It is my firm belief that we are all one job loss, one sick child, one unexpected accident away from being on the other side of this debate. And all the talk about the “others” will become a mouthful of humble pie as we begin to talk about “us.”

I don’t have all the answers. No one does. That’s why we all have to talk instead of shout; create solutions instead of roadblocks; remember the innocents that are caught in the middle of all the chaos-spewing pundits; realize we are all closer to needing, really depending on, a smart solution than any of us would like to admit.

For many of us it was our good fortune to be born into circumstances that have afforded an easy life where much is taken for granted. For others, the security that comes with having the most basic of needs met and the most human of fears allayed is nothing but a dream. It is our great challenge to realize we are all basically the same. To drop the pride and fear that separates us and dig in to do the right thing—for each other. I am convinced that one subtle shift in attitude could change the world and the way we live in it. Naïve? Maybe. Worth a shot? Absolutely.

26 miles, 26 miracles

Post race with my marathon partner, Superman Shane.

Saturday was marathon day. It was the perfect day for a run. As the thousands of runners marched their favorite running shoes and dreams of finishing into the steady stream of pre-dawn school buses headed precisely 26.2 miles away, I could feel myself getting excited and calm all at once. All the preparation was finally over. It was time to see if it was enough.

Fortunately (make that miraculously) for me, Matt's cousin's husband (got that?) Shane, an accomplished marathoner and athlete agreed to run with me. We were never able to connect for a run prior to the race, but he greeted me with a wealth of positivity and good advice. He was optimistic and hopeful we could meet my new-found goal of finishing in 3:40, the time required to qualify for the Boston Marathon.

Just as a huge harvest moon settled behind the mountains and dawn began to debut, the race began. It was crowded and fast and wonderful. Shane and I shook our heads as we watched, ran past, and sped up to avoid a few characters in the crowd. The woman who kept dropping her camera and running back to get it--who runs a marathon with a camera? The breather who made us tired just listening to his forced air exchange. And many others that made people watching the main focus as the miles clipped by. There were hills. There were pace checks. But mostly we just ran.

When we hit the half way point about four minutes ahead of schedule I started to believe we were going to hit the mark. At mile 16 I started to choke up. Boston? Really? Yes, really. When the miles got harder and my muscles more fatigued, I recalled a list of 26 miracles I made prior to leaving for the race. "If I ever need a little extra inspiration, I'll remember the many miracles that have brought me and my little family to this point," I thought as I typed out the list last week. I titled the list 26 miles, 26 miracles. And I was glad I had that list to think about. I ran a mile for Dr. Hawkins. I ran miles for Dr. Lei and Dr. Pinto. I ran a mile for good neighbors. Another for best friends. I ran a mile for Matt and another after that because he's earned it. I ran a mile for Luna, Gracie, Avery, Daxton, Teagan, Jack and their moms. I ran miles for Ty and Preston and their brave, loving, amazing hearts. I ran a mile for the never-ending support of family. I ran a mile for Paul. I ran still more miles for many other non-coincidences, new relationships and old friends. And of course, a mile for McKay who makes everything complicated and simple all at once. My life is full.

Still somewhere between mile 24 and 25 my muscles started to give and doubt began to creep in. I walked for the first time. I cursed--just once. The voice of celebration in my head gave way to negotiation. Maybe next time, I thought. Under four hours is still okay. Your legs are jello. Just walk. That's when Shane looked at me and said, "You've got this, but you have to run." So we ran. I remember seeing the finish line and Shane grabbing my elbow and saying, "Sprint."

We finished. Stopped our watches and stared: 3:40. Matt greeted me and then ran to the official results tent and returned with a little white slip of paper. He looked worried. "What is the very last time you can have for Boston," he asked. "It's 3:40:59," I said. He smiled and handed me the paper: 3:40:22. We did it.

I screamed so loud I scared my four year old to tears. "WE'RE GOING TO BOSTON!!!!" It was an unbelievable feeling.



As I sit tonight, feet soaking, here's what I know: When you finish a marathon everyone wants to know your time; the official measure of your success. And, yes, that's important. But the real accomplishment of finishing a marathon is not in the 26.2 miles of aid stations, other runners, cheering crowds and balloon-filled finish lines of race day.

Marathons become milestones in your life because of the many, many, many mornings nothing but your will power pulls you out of a warm bed and into streets still dark and groggy with night.

Marathons are earned through a series of lonely runs, stashed Gatorade, and endless inner dialogue. It's just you and the seconds, minutes, hours ticking by on your watch. It's beautiful sunrises only you see. It's sleepless nights full of babies who don't understand the miles that must be logged. It's discovering how bad you want the goal, but not fully understanding why. It's the endless support of a spouse who knows you need this; you need to sweat and think and beat it out so you can come home and be better.

It's the miracle of an unexpected coach, mentor, friend who at the last minute agrees to run with you. Who in the last miles of the race tells you how close the finish line is, how you must keep running, how you are just too close to quit now. And the mornings, the miles, the hours spent preparing mean nothing in the end without that voice next to you telling you, "You can do this. Just keep running. You have to run. If you want it, you have to sprint." And so you do. And with just 37 seconds to spare, you make it.

We all run marathons. Some physical. Some emotional. Most of us finish without anyone noticing. And we rarely take time to heal, to rest, to refuel before the next race begins. My race was physical, but I think it was my most successful because it has been a year of watching others finish strong. Watching others help each other through the hard parts.

Please keep running all your many, varied races my friends. You inspire. You motivate. You make me want to do and be better. Keep. Moving. Forward. See you in Boston.

Latest Check Up

We made the drive up the hill to Primary Children's this week. It was time once again to check in with McKay's cardiologist. After a quick weight (just shy of 26 pounds--honestly, can you believe that?) and height update (32 inches--90th percentile), our big guy got a quick EKG (the procedure you see in the pictures) and then faced his moment of truth with the pulse oximeter.

We have such a love-hate relationship with this obnoxious beeping wonder. We love it when the machine spits out good numbers that let us know Mac is receiving all the O2 he needs to keep all his systems running. We also marvel at how such a tiny little light on a such a chubby little toe rules many of the most critical decisions we will ever make. We hate it when the numbers are low. That means it's time to end the chit chat we're making in the moments before the numbers settle in for a good read and the mood in the room is about to change. Yes, we hate the pulse oximeter for its ability to provide a deep and silencing buzz kill.

This time around the reading was low again (68 -72) . Not good. He should be between 75-85. But then again it's low 90 percent of the time--always has been. I was sure his cardiologist was going to tell us to start up the oxygen. Instead, she wheeled herself over to the computer and started looking over McKay's history. As her mouse scrolled up and down his information she asked if we'd been spot checking him at home. I told her we had. Then she asked if we had any oxygen at home. I said we did. Then I raised my arm to the square and swore like a Boy Scout that our home monitor always read between 75 and 78. She turned back to the computer.

A few minutes later she said she wanted an Echo cardiogram done before she made any decisions. And just like that we were in the Echo room trying to get McKay to take a bottle watch a show and lie still why the tech spread goo and her magic Echo wand over his chest to take an inside look at his how his valves were functioning, specifically his aortic valve. To my great amazement McKay was the perfect patient. They took amazing pictures of his heart in all its funky glory. I really hope to get a video of it someday. It is hard to wrap your brain around how a heart that is shaped like that functions at all. The body is indeed a wonder.

The best news of the day came when McKay's cardiologist told us that the echo looked great, practically perfect in fact. All systems are still as tight and strong as we pray they will stay. Even better, the echo convinced her that Mac could stay away from the tubes for now. His low saturations are still a bit of a mystery, but the news earned a deep exhale from us.

McKay is so active right now, huffing and puffing his way around his kingdom. He gets winded quickly and has a tendency to rest his tired little noggin on the carpet for a few moments now and again, but once he feels recharged there is absolutely no stopping him. He is a one-man wrecking machine without time or patience for the tubes that would prove something akin to tying a lasso around his head. I seriously don't know how other moms do the oxygen thing once their little ones are walking and crawling. My hat is off to you for all the patience and worry that must come with that necessary evil. I know we will get there again, but for now, we're tube free.

We made several promises to check his sats regularly, to come back in if his lips get any bluer or his naps any longer. Yes, yes, and yes. I guess this is all part of being in waiting mode. Waiting for the next step. Waiting for the hospital to find another senior surgeon. Waiting to see if we will seek experience and know-how out of state. Waiting to make it through another season of sequestering Mr. Mac away from the many, violent germs that have just begun to make their debut. Waiting, waiting , waiting for answers.

We have decided that McKay will get the H1N1 shot this year. We had been on the fence about it until our card said to get the shot. Apparently even if the kids can beat the flu, the lasting respiratory effects are severe (and could prove a fatal complication for little sweethearts). She says the outbreak will be fast and widespread and encourages getting the vaccine as soon as it's available. Decision made.

As long as we're talking about shots, Mac's next (and hopefully last) season of Synagis shots will begin in a few weeks. The vaccine is designed to prevent RSV. The bummer of this miracle drug is that it only has a 30-day life in the body. So once a month for the next five months McKay will receive his dose of this nasty blessing. The shot is a thick, painful one that takes longer to give every time the dose is increased. (I've honestly never seen a shot given so slowly. It makes me tear up every time I help the nurse hold his chubby little thighs down.) Mac's dose usually goes up monthly as it is tied to his weight. The cost of the shot is also based on the amount of the vaccine required. Last year we watched the cost of each shot increase from about $1,300 all the way up to over $2,500 for his last shot of the season. Oh well. We'd rather meet our deductible preventing illness than in the hospital fighting it!

So much is swirling in my head about the next 12 months of this journey and all that it will bring. Yes, we are anxious. But we are so blessed to still be on the journey. There are many who would do anything to have my worries. Instead they only had their babies for a few hours, or days or months, or --heaven forbid--years, before the Lord called their courageous little angels home. I think that thought and say a pray of thanks to accompany it every day.

I look at examples like Paul Cardall; a miracle of a man who says, at 36 years old, that at just a few weeks post heart transplant he has never felt more healthy in his life. The truth of that statement makes me want to sing for him and weep for these little warriors. How do they feel every day? Would you and I even get out of bed if we felt their "normal"? What is it like to be them? Will they ever know the difference? McKay's smiles tell me that there is much of life worth living no matter the vessel God has asked you sail in this life. And sometimes when we catch each other's eyes in the quiet moments of the day, I know he is grateful his father and I made the decision to let him sail. No matter the length, no matter the circumstances; life is a gift.