Dragon Parents

Last night I had a hard time falling asleep, so I perused facebook to see if there was anything interesting, and came across this link to an article: Notes From a Dragon Mom - NYTimes.com.  Curious, I checked it out.

How I could relate!  Kai may not have a degenerative syndrome, and there is a chance that he will survive to adulthood, but in all reality, he will most likely not see past his third birthday.  He will not attend college, he will not marry and have children.  He will be dependent on us all his life.  He will not be able to vocalize more than a few words (if any); he will not be able to grasp mathematics.  Even with the hearing aids he won't be able to enjoy the finer nuances of music.  We will be lucky if he can hear speech sounds.  We don't even know if he will be able to walk, let alone run.  Swimming is out of the question with his trach.  A simple cold could be fatal.

Yet, despite all that, we do not live in grief and despair.  You see, we have a knowledge, and now more than ever, an understanding of our purpose in this life.  Kai brings us a little closer to God.  We have become dragon parents.  We have grown stronger.  We know all about oxygen saturation levels and the twelve different shades a person changes before they are really "blue."  We are experts at suctioning and signs of respiratory distress.  We could tell you all about granulation tissue and the woes of a feeding machine.  We have logged over 4,000 miles in the last 20 weeks going back and forth to the hospital and different specialist appointments.

And yet, through all this, we do have a healthy child for whom a bright future is possible.  All her hopes and dreams; the world is attainable for her.  She shows strong inclination for athletic abilities and we will help her develop those skills and other interests.  When Zuri was born I thought how could I ever love anyone more?  Then Kai came to our family.  Love multiplies, not divides. 

We live for today.  We take hundreds of pictures.  We create memories that will survive even when Kai is not with us any longer.  We love, we laugh, we cry.  We have good days and we have bad days.

We try not to ask "why" this happened to us.  We did that at first, and there is no good answer--at least not an earthly one.
Was it my fault?  What could I have done differently?
All the doctors say: nothing, there was nothing that you did to cause this.    
Is there something wrong with me?
No, comes the reply, it is just random. 
Will it happen again if we have another child?
The chances of you having a healthy child are much greater than having another unhealthy child.

I admit, it is very hard to see all the families around us with healthy, happy children.  It is hard not to be a little jealous when friends go on vacations, to see our friends and families live perfectly "normal" lives--because our lives are not normal.  We can't just ask anyone to babysit for us--the person has to be trained how to take care of Jeremy.  We can't just pick up and go places anymore.  Several years ago, J and I bought a travel share because we have a desire to explore and see the world.  Now, I get excited when I get the chance to get out of the condo to go to Wal-Mart, but even that we can't do as a family.  Since Kai has been home, J and I have precious little time outside of the condo together.  Every minute we are gone we feel guilty and worry.  We both have a strong desire to move out of Utah, but now where the whole country/world was open to us, we have to worry about where the closest hospital/specialists are located, pollution, and elevation.  It is easy to look around and be saddened by all that we have "lost," and all that we cannot do. 

But we try not to look at it that way.  We keep each other buoyed.  We keep an eternal perspective.  We love our children.  We know that "this too, shall pass."  We talk about ways that we can accomplish our goals and our dreams.  It won't be easy--but we will make it happen--somehow.

The mothers and fathers of terminally ill children are something else entirely. Our goals are simple and terrible: to help our children live with minimal discomfort and maximum dignity. We will not launch our children into a bright and promising future, but see them into early graves. We will prepare to lose them and then, impossibly, to live on after that gutting loss. This requires a new ferocity, a new way of thinking, a new animal. We are dragon parents: fierce and loyal and loving as hell. Our experiences have taught us how to parent for the here and now, for the sake of parenting, for the humanity implicit in the act itself... (excerpt from article).

When the time does come for Kai to pass on, we will get through that as well.   It will be gut-wrenchingly hard, but we will make it through.  It's ironic, when we were first married we lived in a ward where there was an older couple who were genuinely happy people.  The Spirit shone about them and you couldn't help but feel their love for you.  We found out that they had lost a child--not sure on the circumstances surrounding the child's death, but when we discovered that about them, it made their joy and happiness all the richer.  J and I want to be like that couple.

For now, however, we are taking things day by day.  We love Zuri and Kai more than words can describe.  Life is not easy for us, but through this trial we are finding a new strength; a new purpose and love of life.

We are dragon parents.