Tantrum

I didn’t realize I was having a tantrum. I only saw the three year old having a tantrum.

But I in retrospect I see that I was most definitely having a full blown tantrum in my mind and in my heart.

You see, Cubs and I are the same.

Exactly the same.

Minus our coloring and gender differences, we are the same.

We both love adventure, danger, mud puddles, control, lending a hand, bubble baths, working outside, getting our hands dirty with a good project. We are needy and affectionate. We lose our tempers and are ruled by passion. We are natural born leaders and idea generators. As the older one in the twosome I have had the advantage of twenty five years to learn the best way to reign in my more ballistic personality traits and nurture my useful ones…but poor Cubs has not had this advantage.

He reminds me of the fairies in J.M. Barrie’s Peter Pan. They are so small they only have room to feel one emotion at a time. Thats my Cubs, he is either all happiness or all anger. So its not uncommon for him to have a tantrum. A full blown, throw your head back and wail like a banshee who just stubbed his toe TANTRUM.

Things start coming apart in my brain when he throws a tantrum. Like those GE kitchen commercials when the appliances start unhinging and breaking apart to reveal every cog and screw within. My brain cabinets open and bits of information start falling out…memories, lessons learned, conversations with God, screaming sessions with my parents, broken hurts that still need mending, everything floats in the air for a moment so that I can get a good 3D introspective gander at it before the pieces all clash to the floor.

Basically, I look at him and then proceed to have a meltdown over my own mistakes and personality flaws.  I want him to progress to where I am. To channel his passion for good, to curb his anger and greed for instant satisfaction. I am ashamed of the condition of his heart and of my own for feeling that way. I am frustrated with myself for losing my temper in favor of the quick behavioral fix rather than a calm wise character building illustration a la’ Marmie from Little Women.

So I am taking this all apart GE style. Looking for the best ways to aid him in gaining the tools and understanding he needs to figure himself out. As my husband so wisely pointed out a few nights ago, our city is filled with boys who never grow up to be men. They get the tattoos, work on body building, buy huge cars and hide behind their hobbies, always escaping the moment that tests their metal, shrugging off the chance to accept responsibility and face it like a man. Hiding behind their own tantrums.

I long for Cubs to be heart strong so that when his moment comes, he can choose to be a man and step up to the task before him. I hope he knows himself well enough to make the right decisions, that his feet will be firmly planted in the truth of God’s word so that he will not waver from it merely to appease what the world sees as correct or true.

In the meantime, I am beginning to get the feeling that this motherhood gift of excruciating self-examination that comes with each milestone in my children’s development is not going to go away anytime soon. Its here for good, isn’t it?  Thank God.

Ann Voskamp wrote on her blog yesterday,

"Mothers never stop being with child. You always make a space for me within you."

It hit me hard. I really needed those 9 months of pregnancy to prepare myself for the task ahead. I could not have had everything ready, all the perfect answers, if pregnancy only last a week. In the same way, I need their whole childhood to be ready for each stage as it comes. I need the step by step development alongside them. They need me to need this. 


So while I would love to look at my son in the midst of a tantrum, cluck my tongue and slap out an awesome life lesson, I know that the greater value for us both is to hold each other's hands and get through our tantrums together, letting him know that he is not alone, Mommy is working on it too.

Oh... and prayers and chocolate. Let’s not forget those….

MPS Awareness Day

Today I wanted to share an excerpt from a facebook note I wrote over a year ago. There is a very important day approaching and I wanted to share it with you, my friends.

I met Waverly and Oliver briefly, many years ago. Jeff and I were either engaged or newlyweds, I can't recall for certain. What I do remember is sweet baby Oliver in his carseat, all ready wearing his little tiny hearing aid. And a beautiful, doe eyed little girl named Waverly. Her lovely brown hair swishing around her as she ran around the room, laughing, singing and blessing everyone with her sweet smile.  They were still undergoing tests at that time. Something was wrong with Waverly, but no one knew what it was yet. Their parents had come in to visit my sister in law and mother in law while in town for Thanksgiving. The visit lasted no more than an hour, but I vividly remember those lovely little faces. And I remember their parents, Matt and Shannon, glowing with love and affection for their children. 

Not long after this brief visit, we heard the devastating news. Waverly had been diagnosed with Sanifillipo (or MSPIII), a horrific, nightmare of a disease that steals the lives of children. Essentially, their bodies are unable to break down sugars and a build up occurs inside that causes them to regress. Losing their speech, movement and cognitive abilities until they eventually die. I still tear up every time I read a description of this disease. Terminal diseases are always shocking, especially with children... but there is something especially harrowing about Sanfillipo. Pieces of children, their personalities and laughter falling away bit by bit, the heartbreaking stomach churning regression into death. I kept seeing Waverly's face and her beautiful smile and couldn't believe it was really happening to them. Eventually, the news came in that little Oliver had Sanfillipo as well. I felt angry and devastated...and I had only met them once. I remember thinking of their mother, Shannon. I found myself praying for her and her husband all the time. I prayed for their memories. That God would bless them with many beautiful days full of laughter and golden childhood memories.  That every good day would be stretched out and that God would bless them with unexpected moments of joy. 

Over the years we have faithfully read Shannon's blog, every update is read and I pray for her often. After my own children were born I began reading her thoughts in a new light. The horror of the disease will never be fully real to me because I am not the one with them each and every day, caring for them, helping them, fighting for them. Watching them and the clock, knowing what the coming days will bring. It hurts to think of what they go through as a family. While I love seeing those happy pictures, the good memories of days in the park and birthday parties, I find myself weeping when I read that one of their children has lost yet another ability.


 I hate Sanfilllipo. These two beautiful children who are wonderful, brilliant little beings no matter what their bodies have been hindered with...I want to cry when I think about what has been stolen from them and what they suffer through every day. How confused they must feel… 

We have learned from Shannon that there are certain diseases out there, Sanfillipo being one of them, that have been termed "orphan diseases." These are the rare diseases that are not common enough to merit big dollars from pharmaceutical companies to search for cures and therapies. Basically, who would want to invest millions of dollars for medicines only a few would buy? This means that the parents of children with Sanfillipo are the ones fighting for a cure, fighting for their children and fighting for future children burdened with Sanfillipo.

This is one of the things I admire most about Shannon and Matt. They works so hard each and every day to give their children the best possible life. Shannon does everything she can to keep their skills and functions in working order. I imagine that just doing those things is exhausting, but they go even further and take up the fight for finding a cure. At this stage in their children's Sanfillipo, its difficult to say whether or not Waverly and Oliver could benefit from any therapies or cures found. But they have the hope that one day families will be told, "Your child has Sanfillipo....here are the treatment options...” 

May 15th is MPSIII Awareness Day. We have been out of town for this day three years in a row and will be out of town again this year. But we always find some way to mark the day. Usually with purple bracelets or purple shirts. This year, we want to take the time to help raise money. I haven’t decided what we will do yet, but I do know that we will do it together. The boys participation will result in more effort and less money made, but their involvement is so very important. They know who Waverly and Oliver are because we pray for them often. They know these beautiful children are sick and that they need to find a cure.  And so, even if it takes a few hours longer, and even if its not on the the exact Awareness Day, we will be doing our part to help find a cure. 

Here is a website with more information on how you can pitch in.

Waverly and Oliver’s father, Matt, has written a children’s book, every cent of it going towards finding a cure. FInd out more information about the book here. It will be released on May 15th of this year! Encourage your local schools to buy this book or donate one to your local library!

Even if all you do is wear a purple ribbon, it will achieve the monumental task of spreading awareness.  Thanks for reading!

Dr.

Every time I round the corner into the kitchen, my eye automatically searches out the calendar on our fridge. For months now, I seek out that scrap of organization that keeps an account of our days. 

How many months left?

How many weeks to go?

Will he be home tonight?

Will he get a chance to rest tomorrow?

67 days to go, Lord, will we ever make it?

Its been five long years since we made the move down to Miami to begin J’s PhD program. I was four months pregnant. The only responsibility in our newlywed life was a shaggy pup named Frank. Life was simple and manageable and filled with curiosity over what our future would bring. We knew the Lord wanted us here. We knew he would lead us and sustain us. 

But I must admit, back then, it was something I meant only in words….today, five years later, I can say those words and mean them with every fiber of my being.

I have seen the Lord carry my husband through dark days of uncertainty and exhaustion. I have felt his sustaining hand on the days when I thought we would fail, when dark whispers surrounded my mind and urged me to buy into the notion that I was a terrible mother, a burdensome wife, unloveable, incapable, a hopeless mess.  He was there. He made himself known over and over again. 

Holding onto us when death tried to snatch us away. 

Restoring us each time he refined us.

Always keeping His promises.

Life has been very hard, but so filled with Him that it has been a joy. 

I am so proud of J.  He graduates this week with his doctorate.  I am suddenly a “Mrs. Dr.” and I could not be more honored to belong to this man. 

We still don’t know where the Lord wants us next. Applications have gone out everywhere…from Fairbanks, Alaska; to Houston, Texas; to Doylestown, Pennsylvania. We appreciate your prayers in the coming weeks as J decides where the Lord wants him to lead our family next. 

This is a big week for us. We get to spend days upon days celebrating J. All of his hard work and accomplishments, the new title, the release of stress and nerves. His family is coming down to be with us and we get to spend a whole week playing and laughing with our nieces and nephews. Joy! 

Congratulations Dr. J, I’ve got my eye on the calendar, I can’t wait to see where we go next!