Taking the Long View

this is why the mess doesn't matter

One of my goals as a parent it to always keep the long view in mind. Sometimes I fail spectacularly but I find that thinking about what my long term goal is helps me to discern important from nonessential.

When my children were very small my husband designated a wall in our house that was theirs to do whatever they wanted. It was not easy to buy into this plan because it meant that EVERY guest we had would be passing the "art wall" on the way to the bathroom. But his argument was that he always wanted to have one when he was a child and that the kids mattered more than the wall. For the next four years they painted, drew with chalk, crayons, and markers on that small expanse of wall. At first it made me cringe and then little by little I embraced the idea that my children were more important than the mess. It only took one hour to Kilz and paint that wall when the kids were done with it and it gave them four years of enjoyment and an awareness that we valued their artistic expression and freedom.

Our house has been the site of indoor cookie parties with 12 pounds of icing in 20 different colors with 47 kids under 10, tye die parties with 35 kindergartners armed with mustard and ketchup squeeze bottles to squirt the shirts, craft days with glitter and glue and an abundance of paint that was only overshadowed by the number of children doing the painting. At the end of some of these parties, I would wonder if it would be easier to just move than to scrub the hardened icing from the walls and vacuum the glitter from the floorboards. But years later my kids remember some of those parties with a clarity that I find surprising.

We don't just punish ourselves with parties, we also have incorporated messy endeavors into our family traditions. Every year we decorate gingerbread houses. It started at my mothers house and has moved on to ours since all live together on the family compound and is a highlight of the Christmas season. As much sprinkles end up on my floor as on the houses and the sheer volume of candy and frosting can be overwhelming. We bake gingerbread cookies every year and they always "run away" while they are cooling and a grand hunt ensues to find them. But at the end I always wonder if it would be easier to just burn down the house instead of cleaning the kitchen.

Here is where the long view comes in - when my children are grown they will remember that we gave them a wall and valued them above the opinions of our guests, they will remember that we had parties that bordered on absolute chaos and managed not to micromanage their creative process, they will remember that we put family traditions and togetherness over a sparkling clean floor. I hope when they become parents they will embrace the temporary mess because by embracing the mess they will be embracing their child and making memories.

The day will come when my house is perfectly decorated, sparkling clean, and calm and peaceful all the time and then I will miss the mess and the chaos.

my kids still remember this like it was yesterday and that cutie in the red dress is my surly teenager

Falling Apart

The first time I held my oldest child she died in my hands. As they pulled her from me and began the frantic, frenetic process of resuscitating her, my mind and my heart separated. I endured silently and calmly until I saw that she was breathing and her heart was beating again. Then I fell apart. When I was scrubbing up to see my son in the neonatal ICU two years later, I heard the code blue for him over the loudspeaker. Once again the rational and emotional sides of me splintered and I endured until he was stable and then broke down.

Two of my children have disabilities. I do not have the luxury of falling apart during a problem. Problems are a part of our daily lives. I have stood by helpless and watched my older children scream and shake in pain, endure countless hours of therapy, medical procedures, uncertain futures. What makes it possible for me to stand by and stay calm is that I almost lost both of them. I have faced the mortality of my oldest children. What is pain and disability compared to death? It is hard to care what the future holds for them when I am just so grateful they have one.

But my baby is different. My youngest child holds the distinction of being the only child I have never had to watch suffer. The only child I have not seen die. The only child I held when she was born, brought home without a tangle of wires, and my only child without a disability. I have never stood by her ER bed while she screamed and begged for me to make the pain stop. I never had to be helpless with her.

Until last week. At a routine orthodontic checkup her doctor found a fast growing tumor that was growing into her lower jaw. She was in the hospital within 36 hours being prepped for surgery and I was barely holding it together. When they wheeled her in to the OR she reached her little hand back and said crying, "Don't leave me Mommy". I felt scared and helpless and completely unmoored. If it hadn't of been for some wonderful friends who came to the hospital to wait with us, I would have completely broken down then.

But I was still terrified. Scared that my little girl, who had never known a moment's suffering, may have cancer. To be there for my daughter, I once again disengaged my mind from my heart and endured. I babied her after surgery. made her soup and gave her the little "sick" bell, cuddled and watched movies. All while studying for my finals 4 days later. I refused to let my mind go to the big C word and concentrated instead on her recovery and my studies. When the surgeon told us yesterday that the path report came back benign and the chance of recurrence was extremely low, I felt so thankful and relieved. Once I knew that my baby was going to be okay, I allowed my mind to go to all the possibilities that I had shielded from my thoughts for the last week.

And then I fell apart. And am still trying to reassemble the pieces.

Thankfulness

I have been reading all the thankfulness posts on Facebook over the past few weeks and obviously my mind has turned to what I am thankful for during Thanksgiving. I will admit to a certain amount of patronizing eyerolling at some of the status updates on Facebook. By the second week people are usually either reaching pretty deep or repeating themselves and I find the whole exercise a little contrived and disingenuous. Most people are thankful for what they have in comparison to people who lack. While I think it is important to be aware that the average American life is extremely luxurious when compared to a global standard, I don't necessarily think that should translate to a guilt-filled gratitude.

I do feel grateful for my house, and my car, and electric blanket but when I think about the things that are really important to me - possessions don't rate high on the list. I don't feel guilty for having something that others may not but I know that I could make do with less as long as I have what really matters to me.

What matters to me, what I am thankful for is time. When I was a child I thought time was infinite. An hour was forever, a day incomprehensible, and a weekend an eternity. As I age, as I experience joy and tragedy and loss, I have realized that time is finite. Last holiday season was so stressful because I was afraid, every time I looked at my mother, every time I thought about how sick she was I panicked. I really thought that my time with my mother was almost up and my heart was breaking. I felt the lasts - the last thanksgiving, the last Christmas, the last birthday. So my house and my things and even my beloved electric blanket seem pale when compared to the time that I still have with my mother.

That time will come to an end and I am sure it will be earlier than I am ready for but for now I can be thankful that what I thought were the lasts weren't.

Living Today

One of our many todays from yesterday

It is difficult to live in the moment. Nostalgia pulls you backward and anxiety pulls you forward. "How is is possible my children aren't babies anymore?" is at war with "Will my children continue to stay on the right path and make good choices?" And that parenting schizophrenia steals from today.

I have very few memories of my two older children as babies. The fact that they were critically ill meant that all of my focus was on tomorrow. My mind was consumed with whether they would have a tomorrow and I neglected to appreciate their todays.

Several years ago I had a very complicated surgery and went through a period of time when my thoughts were focused on my yesterdays. To "before" - before my surgery went bad, before I was functionally disabled, before I felt incomplete. I have very few memories of those two years because I ignored my todays.

I often remind myself that I can only live in my todays - I can think about my past but I will be thinking about it today, I can think about the future but I will be thinking about it today. Today is all that exists.

My children will continue to grow older and the future will become the past and I want to remember and appreciate and absorb all of the todays between now and then.

I don't want to be your friend

My children have very expressive faces and are not very good at hiding their emotions. This has obvious disadvantages - their inability to hide the "I think you are a dumbass" opinion from being broadcast on their face can be awkward. It has one distinct advantage though. I can see my kids from the carpool line and know what kind of day they have had. And my little one had a doozy today.

She threw her backpack in and the door had barely closed before she burst into tears. "Jane (not her real name) doesn't want to be my friend and I don't know what to do! She was talking right in front me and said I was mean and told Susie to tell me that she wouldn't be my friend!"

I always feel completely lost in these girly drama situations. I don't handle crying well and honestly I am as clueless as anyone on the inner social dynamics of most relationships. Surprisingly some people don't like me. I say surprisingly because I like pretty much everyone so I expect it to be reciprocal. I adore my children so I expect everyone else will also. I feel completely inept guiding my children through these minefields and end up trying to apply my science brain - only time will tell if that is effective.

So logically my first question is if the little girl has a point? - Is she mean? That was answered strongly in the negative which I would expect - my little one is a lot of things including dramatic, messy, even a little bit of a know it all but not mean. So here comes the hard lesson for my baby - not everyone is going to be your friend. You can't make anyone be friends with you and there is nothing you can do to "fix" it. And most of the time when someone is mean to you it has everything to do with them and nothing to do with you. And it hurts because everyone wants to be liked and it is okay for it to hurt.

I look at my little girl and I see a loyal, intelligent, vivacious, compassionate, loving little girl that anyone would be lucky to call friend. And I don't really care if Jane ever realizes that because at the end of the day I don't really care what Jane thinks. But I hope that my daughter knows it and feels it and lives it. Because there will always be a Jane - someone who doesn't want to or cant see the valuable things that she offers, who is mean and hurtful, who excludes instead of includes, who tears down instead of builds up. Life is about realizing that what the Janes of the world think about you doesn't matter - what you think about you matters.

Running with Cerebral Palsy

My daughter is a runner. I love the way those words roll off the tongue - I get excited every time I say it. My daughter is a runner. I just want to pinch myself. My daughter is a runner.

I remember when Caitlin took her first stumbling little steps after her 2nd birthday. She looked like a drunken sailor and fell about every third step. We had to buy special (read expensive) shoes because her feet were so stiff and inflexible. She cracked a bone in her eye socket about 6 weeks after she started walking and if you have never taken a 2 yr old to the emergency room with a broken eye socket you don't truly know the meaning of third degree interrogation.

We were so busy taking each day as it came and trying to provide everything she needed to be the best she could be that we really didn't think too much about the future. Watching that stumbling, black-eyed little girl, I would never have believed that she would run with such a strong, balanced gait.

Every time she finishes a race I find myself wanting to tell everyone around that she has cerebral palsy. I want them to understand what she has overcome to even be on that field much less crossing the finish line. The pain she has endured, the hours of therapy, the braces, the torn hamstrings, the broken elbow and thumb, and her own fear that she wouldn't be able to do it.

And none of those people know any of that. All they see is another girl crossing the finish line -not the fastest but not the slowest. They have no idea how hard she has worked to be considered one of many. That it is a personal achievement for her to blend in so seamlessly as to remain unnoticed.

My daughter is an athlete. She is a runner who runs for the sheer love of running, she runs to feel normal, she runs to prove she can.

Whoever, However You Are

In many cultures the thirteenth birthday is a transition from childhood to adulthood that is commemorated with some grand event - a bat mitzvah, a hunt, even marriage in some cases. The most we could come up with was adding you to our cell phone plan as a sign of your maturity and "separateness" from us. It seemed kind of pale so I decided to write you a letter. The teenage years are notoriously difficult between moms and daughters. You will want desperately to prove that you are not me and I will also desperately want to keep you from making the mistakes that the me I was at your age made. And that leads to conflicts and tears and slammed doors and often several years of not quite fitting together as the perfect little pair the way we did when you were little.

So many times parents speak of their hopes and dreams for their children all underlined with the idea that at the end of the day their child be happy. When you were born I only hoped that you would survive - your life at the time was too tenous to imagine what profession you might have as an adult. I begged, bargained, pleaded, prayed that you would continue to keep taking one breath after another. I promised myself that if you did make it, I would be grateful for each one of those breaths. That I would not lay a heavy burden of expectation on your shoulders to chafe under - that I would let you be you and be thankful for it.

I have not always succeeded in that promise. Gratitude in some ways can be like grief - when it is fresh it overwhelms the mind and the senses and pushes everything else away. But as time goes on while it doesn't lessen in strength it comes to visit less often. When you were a baby I would lay next to you almost every day and listen to you breathe watching as your tiny chest rose and fell. Awed by the evidence of your warrior spirit and humbled that I was your mother. I no longer watch you breathe with the ardency of a new mother but last week you walked out onto the deck and raised your face and closed your eyes to take a deep breath and smell the grass after the rain. I listened to you breathe and watched your chest rise and fall and once again I was awed by your spirit and humbled to be your mother.

Your favorite book as a toddler was Maybe my Baby by Irene O'book. The cute little rhyme in it always captured perfectly how I felt -

But Diver or Driver
Inventor or Star
I'll Love you
Whoever, However
You are

I am thankful for who you are and the woman that I can see glimmers of you becoming. I love you so much and I am always proud of you.

Transferring Power

Caitlin turns 12 today. It doesn't even seem possible that the little beanie baby sized baby that we carefully held, negotiating tubes and wires, is now in her last year of preteendom. Tonight I was talking with some women about my pregnancy with her and when she was little and it seems so close behind me as if it was yesterday.

I remember so clearly my first doctor's visit when I was pregnant and being devastated when the doctor so bluntly told me that the chances of me having a live baby were close to zero and asking if I had considered abortion. I rejected that and decided to go ahead with my pregnancy.

Then she was born and we were given the horror stories of 24 week preemies - that if she did live which was an enormous elephant in the room sized IF - that she would have very little chance of being normal. I rejected that and decided that she would live.

Then she had a brain bleed on her third day of life and also needed heart surgery. On my 23rd birthday still in the hospital recovering, a surgeon told us that she might not make it through the surgery and that her brain bleed could progress to "catastrophic". I rejected that and waited in my hospital bed with my birthday flowers surrounding me for news that she had come out of surgery alive.

Then she was home and we were told that her prognosis was poor and she was unlikely to walk or talk. I rejected that and believed that she would run one day.

Then she was a toddler and we were told that her hands would never be strong enough to write or cut or dress herself. I rejected that and had faith that she would tie her own shoes one day.

Then she was 9 and the doctor said that she would be in a wheelchair by 18 unless her legs were stretched and she received hamstring and heel cord surgery around 12. I reject that and I am watching her legs accommodate her growth without surgery.

I have seen my daughter through the whole spectrum of her life and I have seen her live, and walk, and talk, and run, and tie her shoes. I have seen her do all the things that she was never supposed to be able to do. I have always had faith in her and for her. Now she must have faith in herself and reject the harsh words of a surgeon, an unkind remark from a friend, the disbelief of a teacher or diagnostician. I can support her and stand by her but I can no longer choose for her. She owns her own mind and is reaching the age that my belief and faith in her has to become her own confidence and self-assurance. She has to now choose to reject the negative and embrace the belief in the future positive.