Thursday, April 29, 2010

Nothing to be ashamed of....

A few weeks ago, while we had company, our telephone rang. I peeked at the Caller ID and hit a button to silence the ring. Jackson, in an effort to impress our guests, gave an exasperated sigh, rolled his eyes and said, "Probably just a bill collector."

Clearly, we need to teach my four year old about proper dinner conversation.

Our visitors just pretended that he hadn't said anything and my husband and I happily ignored him, as well. Before my readers begin sending me messages about debt consolidation or money management programs, let me stress that "bill collectors" do not call our house regularly. As those of you with children know, you can say something ONE time in front of your child and they will inevitably repeat it, at the most inopportune time.

That being said, this blog ain't called "Coasting in on Fumes" for nothing.

Yes, Jack has heard us say the phrase he repeated. I am not ashamed of that. I don't want pity or advice and I definitely don't want to be judged. What I do want, is for people to understand the choices and life situations that are made by families such as my own.

My boys have Noonan Syndrome. As a result, they both also have Von Willebrand Disease, which means that their blood doesn't clot properly. Last September, Henry had a GI bleed. I discovered this when he awoke from his nap with a diaper full of blood. We took him to York Hospital's ER and they discovered his blood count was dangerously low. We were rushed to John Hopkins by ambulance, because York Hospital felt he needed the best care possible. When we arrived at Johns Hopkins, we were informed that they did not have the time to find the source of the bleed. All they knew was that if he did not receive a blood transfusion within an hour, his heart (which was at 214 BPM) was going to give out.

After the transfusion, a million tests, and three days in the PICU, they discovered that a Meckel's Diverticulum (very rare) had ruptured in his stomach. Since Henry's blood doesn't clot, it had put him in a life threatening situation. He had surgery, which required more platelets and more monitoring. I spent ten days with Henry at Johns Hopkins Hospital throughout the ordeal. Words cannot begin to describe what it was like. It was easily the worst ten days of my life.

I can honestly say that we did not bother to pay any bills or even look at our checkbook during the ten days in which we wondered if our son would live or die. In addition, Michael had limited vacation time, so he had to take four days off with no pay. Yes, bill collectors began calling our house. I am not ashamed of that. For those of you who have never had the experience of an unexpected, extended hospital stay, insurance does not cover late night trips to the vending machines. It does not cover gas money to get home to check on your four year old, who doesn't know where his brother is. And it most definitely does not cover the $25 that you have to spend at the hospital gift shop to buy an outfit to take your baby home in, because the only clothes he has at the hospital are soaked with ten day old blood.

It's been seven months since we almost lost Henry. The physical, emotional, and financial scars are still there. We are coping. We are dealing with what comes at us, as it comes at us. Jackson makes inappropriate announcements because we teach our boys to not be ashamed of who we are, what we go through, or what we have. If people want to judge our lifestyle or how we manage our money, that is their problem, not ours.

When we left the hospital on the day Henry was released, he was back on a normal diet. After a seven day liquid diet, he had had three days of hospital food. I also knew that the veins in both of his feet and both of his hands had collapsed under the strain of the five different IVs he had. Because of that, his last four blood draws in the hospital had been taken from his head. And I knew that if there was ever a child that deserved a treat of McDonald's french fries and a Coke - it was him. Despite the money problems I knew we were going home to, I counted out the change in the console of my car and went through the drive thru for my brave boy before we got home.

And I am not ashamed of that.

Monday, April 26, 2010

"I had it first..."

I hear these words at least one hundred times a day. They are usually preceded by a four syllable version of "Mom," followed by either tears or an act of violence.

"Mo-oo-oo-om!! I had it first!"

I hate these words.

The best part is that the "it" in question is usually nothing of importance. I've seen my kids come to blows over a piece of aluminum foil that one of them got out of the trash. True story.

I make an effort to teach the boys that it does not matter who had it first, what matters is how they resolve the conflict. After all, more often than not once one stops showing an interest, the other does too. In my house, I do not care who "had it first." I have one rule: No fighting. Period. If an argument occurs, the toy gets taken from both boys. Unless, of course, one boy gets injured. In that case, the injured party gets the toy and the injure-er gets the corner.

I wish more parents did this. Unfortunately, the emphasis most parents put on such trivialities tend to perpetuate the aggression, causing a vicious cycle. Many parents feel that who had it first is not only vital information, but an easy solution to any disagreement.

EXAMPLE (as witnessed by me, at a recent gathering):

We'll call the children "A" and "B" to protect the guilty.

A takes a toy from B.
B slugs A in the stomach, very hard.
A crumples to the floor in tears.
"Mom": "What happened?"
A: "B punched me in the stomach!"
B: "Because A took my toy!"
His mothers response?
"Who had it first?"

After deciding that if A hadn't taken B's toy, he'd have never punched his brother in the stomach, "Mom" hands the toy to B, steps over A (still laying on the floor, probably suffering from internal injuries) and walks away, pleased that the fight is over for now.

At that point, I wanted to slug their mother in the stomach.

These are the same people who, as adults, can be overheard saying, "Did you see how she decorated her porch with hanging geraniums? She knew I hung my geraniums first!"

Ugh.

As for myself, I will continue to teach my boys that who had it first is not important. Sharing is important. Wanting another person to be happy is important. Not causing your brother to have a concussion over a Trick or Treat pumpkin in March is important. I am a person who just doesn't care. I allow someone to cut in front of me in line at the grocery store if they have two items and I have a full cart. When they ask, I don't say, "Well, I'd like to help, but I had this place in line first."

I hope that one day my children will understand these lessons and philosophies that I am trying to teach them. I hope that they will have respect for others. I hope that they will never use violence to retaliate against another. I hope that they will learn to not covet what others have in the first place. And I hope above all, that they begin to understand that having something first is not all it's cracked up to be.

Of course, when they are older, I will have to explain that there are exceptions to every rule and that yes, every once in awhile, it should matter who had it first. Just ask the American Indians.

Tuesday, April 20, 2010

Ode to Mimi....

My family has been watching the series "Life" on the Discovery Channel. The more I have watched, the more I can relate to those animals whose lives and behaviors have been captured so beautifully on film. No matter the species, the theme of motherhood is universal.

I was moved to tears watching the strawberry poison dart frog, the size of a postage stamp, carry each one of her tadpoles one by one up a one hundred foot tree to safety.

I was mesmerized by the octopus, who after laying her eggs, settled in to protect them for the rest of her life. Keeping a constant vigil on her babies, she eventually starves to death.

Perhaps I most identified with the young elephant who had just given birth. When her baby became stuck in a mud pit, she tried unsuccessfully to save him. Just when it seemed that all hope was lost, her mother became frustrated and knocked the young mother out of the way with her trunk. Then she effortlessly rescued her grandchild from the treacherous mud pit.

With the exception of a brief rebellious period, I have always been close to my mother. Our bond became stronger when I became a mother myself. She has been a hands-on grandmother (lovingly called "Mimi" by my boys) since day one. When I went into labor with my first child and realized what horrible, excruciating, agony I was about to endure, I attempted to get into the bathtub, as suggested in our prenatal classes. Unable to even lift my leg over the side of the tub, I laid down on the bathroom floor. I yelled to my husband through clenched teeth, "CALL MY MOTHER!!"

I still have the memory of her, walking down my hallway, swinging her metaphorical trunk, knocking Michael out of the way to pick me up off of the floor.  I remember her calling out, "Okay Michael, if you are going to take her to the hospital, she's going to need some clothes!!"

Now that I am up to my neck in the mud pit of parenthood, my mom isn't trying to pull me out. She doesn't need to... I am happy here. Instead, like the devoted octopus, she has opted to jump in with us. There have been times when she has shown up at our door with the milk and bread that we so desperately needed, overdrawing her own bank account in the process. She was by my side when my boys and I were diagnosed with Noonan Syndrome a year and a half ago. She has traveled with me to Johns Hopkins appointments for the boys more times than I can count. She held my hair when I threw up as my husband drove us home from my hernia surgery a few months ago. And, she'll be there tomorrow, when I call to tell her I have made another blog entry. (She was my first follower.)

I consider myself very fortunate. I am fortunate just to still have my mom, but I am most fortunate to appreciate her and to already value the time I spend with her. Although I can't imagine life without her, I know that day may come. So I attempt to incorporate the lessons that she has taught me into the way that I parent my boys.

As I struggle to carry my boys safely up the tree of life, I know that my mom is behind me to give me a nudge when I slip. And knowing that she is there makes the climb so much easier to make.

Monday, April 5, 2010

Unbroken vows....

Today was not one of the boys' better days. Nothing was easy. They didn't want to get dressed for Easter Mass. Henry decided to go on a hunger strike... ALL DAY.  Jackson threw tantrum after tantrum. The two of them fought from the time they woke up this morning.  It was not a picture perfect Easter Sunday.

Bedtime turned out to be the biggest struggle of all.  When they were finally asleep, I crawled onto the couch, still grouchy over the day's events.  I kept thinking,
"What have we done wrong, to cause this behavior?"
"They aren't getting any Easter candy tomorrow."
"I need to come up with better punishments."

My mind was racing.

When Henry cried out about an hour later, I became even more aggravated.  I went into the boys' room, and picked him up to move him, so to not wake up Jack. But he stopped crying as soon as I lifted him. I stood as he lay on my shoulder and I swayed gently until he settled.  I laid him on his bed and he opened his eyes just slightly and said, "'Nugs??"

('''Nugs" is short for "snuggles" - how could I resist?)

I climbed into bed with Henry and he wrapped his chubby arms around my neck and I rubbed his back until he fell asleep. As I lay there, listening to the sound of his breathing while his damp curls tickled my nose, all of the anger and tension that I had been feeling went away.  I had scolded Henry at least one hundred times today.  But he wasn't upset; he didn't hold a grudge... he just needed my love.

It made me think of marriage vows.  You take the same vows when you become a parent, only they are stronger.  You don't stand in front of witnesses and proclaim them.  You don't use rings to symbolize them.  And you don't sign a license to prove them.  Those silent parental vows come from the depths of your soul.  You can't break them, because they only exist in your heart. It is a biological, emotional, and spiritual connection that is there for life.

I got up from Henry's bed and looked at Jackson, who was sleeping peacefully.  I felt guilty, because he did not get any "nugs" before bedtime - just a threat of no TV tomorrow.  So, I went to the edge of his bed, kissed his cheek, and whispered in his ear:

"Jackson Corbin, Mommy loves you. I love you for better and for worse, for richer and for poorer, in sickness and in health, until death do us part."

And sleeping soundly, he smiled.

Happy Easter, everyone!!