Saturday, May 25, 2013

It's just not true

Before our children were even born we began dreaming for them about what their lives might be like.  We hoped and prayed for health and happiness and some measure of success while doing something they loved.  We wanted them to know the joy of giving back to the world in a meaningful way.  It seems we began to whisper the "lie" to them in our arms as wee babes, "You can be anything you want to be."

Yesterday our Danica had her last day of preschool.  There was a time we couldn't have imagined her independently learning and socializing and being safe.  Because the weather was so cold and icky the preschool picnic was held inside.  We all spread out blankets on the floor to share the last hour of time together with lunch and goodies.  The kids began playing after eating.  One of the little girls in Danica's class had a rhythmic gymnastic kind of streamer.  Danica was in love.  A group of girls began doing somersaults.  Oh my, Danica's little heart was aching.  She was dreaming.  As soon as we got in the car to leave she began telling me all about how much she wanted to do gymnastics as soon as her neck was all better.  I was quiet.  I know we have said this too often.  "When your neck gets better you can . . ."  We never mean to be dishonest when we say this.  There are some things she may be able to actually begin doing if everything is fused and stable in October, 2015, her five year anniversary.  There are plenty of things she just won't. 

When we got home she asked to put on the Amercan Girl movie "McKenna".  Later I heard thumping in her room and rushed in.  I could tell she was trying to do some kind of gymnastic type moves on the bed.  I sat down, and we talked about it.  I reminded her how much we had invested in her neck and how well she was doing.  I talked about how even though everything seems all better she is still growing and fusing.  Now is just as important as ever to obey Dr. Crawford and be careful.  I explained this was not a punishment for anything.  It is just part of her special life.  She told me there is a gymnastics place close to our house where her friends "train".  She asked if as soon as her neck was healed she could begin.  With tears in my eyes I told her the truth.  Finally, I was brave enough to say it.  "Honey, you will never be able to do gymnastics.  It is too dangerous.  There are hundreds of other things you can do, but this isn't one of them." 

It would have be easy for me to jump to some kind of story about kids in wheelchairs who are so sick they can't get out of bed and remind her how incredibly lucky she is.  This is the internal dialogue I carry on in my own head when I begin to feel badly about all the things I simply cannot do any longer.  No amount of wishing or hoping or willing or trying will make most of my old dreams a reality.  I know many who are worse off than I am.  If I focus on that won't I be more grateful?   Theodore Roosevelt said, "Comparison is the thief of joy."  I used to think of this only in relation to people who had the good, better and best I desired.  I realized yesterday comparison to people who have less is also a bandit.  It's something my mom would always do.  She would tell me how much worse something could be to try to bring my heart back into a right place.  I know she meant well, but it frustrated me.  Our family was in ministry.  There were always people much worse off.  This too was taking away cultivating authentic gratitude for my right now, exactly how it was, whatever it was. 

Last night Danica decided to have a sleepover in my bed.  It wasn't even dark yet and we snuggled under my covers.  We entwined our fingers, one of my favorite rituals.  Our breathing became the same.  I never knew a child could be so connected to their mama in this many ways.  Danica's sweet little voice said, "My neck and my head hurt so bad, mom."  Yes, my child, I know exactly how it feels when you push your body to do something you want so desperately but God just didn't intend.  Tears welled up as I rubbed her little spine and the base of her neck. 

We can't be anything we want to be. 

We can only be what God intended. 

Aligning these two will bring real peace and happiness.  Our days are written.  I have been feeling a little better (I promise to tell you about all this soon), and I find my head pushing my body to get as much mileage from what could be fleeting good days.  I end up hurting and cycling back to discouragement and discontent instead of the real gratitude I should be experiencing.  I am so much healthier today.  This is my joy.  I want to tell the truth about all this to my girls.  I want them to believe in impossible things but temper this hope with the realism that brings them continually to God's plan for their lives. 
Your eyes saw my unformed substance;
in your book were written,
every one of them, the days that were formed for me,
when as yet there was none of them.
Psalm 139:16 ESV


  1. Tears.....I fear that this is going to be the same conversation I will have with my son someday after his surgery.

    I recently was given the link to your blog in response to a question I had posted on a support group page. I read every post from all of 2010. I needed to hear your journey in hopes that our decisions would be made more clear.

    My son Theodore (theo) was 2 when he started having headaches after playing hard with his sister. These headaches only last for a few mins & then he is back playing. Jan of this year I finally had him see a NL & he had a MRI done. He was diagnosed with chiari type 1. We met with a NS a few weeks later & he said that he also has basilar invagination. This is where his 2nd vertebrae is pressing against his brainstem. This was all very scary news to take in. The NS didn't feel comfortable doing surgery on theo so we went to American Family Children's Hospital in Madison, Wi & he said that he wanted to have a spine MRI done & flex/exit. He does have a slight syrinx. He handed us over to another NS that works with him b/c she does fusions.

    We really like it there & feel very comfortable with both the NS's that we have worked with. We are supposed to make the decision if we want to have the fusion done @ the same time as the decompression or if we want to only have the decompression first & see how long we can wait with the fusion. I know you have been through the latter of the two with Danica. What are your thoughts?

    So what led you to not go with Dr. Menezes? Iowa is close to us but I really like AFCH.

    Why did Danica have to be in a wheelchair? Was she not able to walk with the brace on? That's the kind that we are going to pick for Theo to have, I think.

    Does Danica have restrictions on how many lbs she can lift for life?

    What kind of bone graft did they use for her fusion? For Theo's they are going to remove part of one or two of his ribs.

    What kind of Dura graft did they use?

    I just wanted to say....Thank you, Thank You, Thank You for sharing your whole story. I cried many times while reading your posts. We are going through a lot of the same struggles with faith, marriage, & just pure frustration. This is not a fun journey but its our new normal just like you said. You seem like an amazing mother & wife. Thanks again!

    Katie Erickson

    1. Katie, So many great questions. I would love to answer them in an email. I can usually link through to write someone back here. You can private email me at so I can reply. I have a Chiari kids prayer list I faithfully pray through over and over and will add Theo and your family to my list. I hope to hear from you soon. Our Hope remains! Monica

  2. Oh Monica, I know the feeling of having to tell your child something like that. Henry once said something to the effect of "when I don't need hearing aids anymore..." And I had to tell him he will always wear them...he will never not need them. He said "even when I'm a dad?" I guess he just thought he would grow out of his hearing loss. I think he was four years old at the time. His eyes welled up with tears and it was a painful, heartbreaking moment for me. It hurts to this day when I think of it. But I told him God made him who he is...he is wonderfully made. So is little Danica.