Wednesday, May 29, 2013

new normal

today is day 39. 39 days since easton got sick, really sick. the kind of sick that sends the red mother alarm off. blaring. flashing.

when motherhood grabbed me with that first maternal inclination, i remember well the thought of panic setting in. grayce was a new baby and the responsibility hit me upside the head and down the other. i remember the distinct thought that it would be 18 years before she could be out of the house and that heavy feeling might leave.  of course that was soon replaced with and eternal well of love. love that surprised me. i was entranced by it, by loving her and wanting 900 babies to love and feel that love from.

when your baby gets sick, it brings such a wide variety of emotions. the love is so perfect and so pure. in some ways, when everyday you are waiting for your child to turn a corner, it seems everything stops. the days no longer count, the measures of time seem loud reminders of when your normal was disrupted. that feeling of love is magnified, explosive because it's all you have to aid this baby in the pain and in the journey.

it all sounds so dramatic. all those emotions over a little boy who is sick. but that maternal instinct is so fierce.  there was one visit to the ER in particular that scott and easton had to go all alone. it was a result of an on call GI dr not calling our pediatrician back for five days. our pediatrician told us to force their hand. i was fed up with our medical system. if we were given one more colon cleanse, i was going to knock some heads together to the tune of a fierce beat. it we were told one more time a sentence containing "wait it out" and "virus", there was going to be someone who would hear it from me. hibernation for mother bear was over. we were 17 days in. i was done living day to day, done with no answers, done with begging for a GI specialist to see us. done. i am the mother and i knew deep in my bones by day 5 that something was not right in his body.  it took 24 days from onset to get to a specialist. the poor kid has gone rock hard on one side guarding because the pain is so intense. he is hunched over and moves slow.  sometimes it goes away, sometimes he vomits. every night its hours to get his body calmed down to sleep, and all night it's tossing and turning. all night. 39 nights. 6 ER visits, 8 lab visits, 4 ultra sounds, 1 CT scan, 5 prescriptions, at least 40 phone calls, psychologists, GI's, immunologists, allergists, and we still don't really know. one dr called today with a lab value that doubled in three weeks over a certain number that means it's possibly more than the severe allergies we discovered in the skin tests and the GI scope needs to be done sooner. when i asked what it could be, he tried to describe it simply saying its benign whatever it is but it's an indicator of something that's yet to be discovered of an abnormal production in the body that could take six months to figure out and watch. sigh.

am i learning? am i taking the opportunity? am i looking up? 

i'm pretty sure brian kershisnik got it right in this painting, lift your eyes my heart tells me on the days my heart is broken for this kid, lift your eyes. i want this painting 50 feet by 50 feet so i don't forget what it does to me when i see it.  it feels like a deep truth in my heart.

 i read this concept from a friend's blog who has been recently diagnosed with breast cancer at a very young age. she was talking about the game of what if i have cancer? the process she went thru upon discovering a lump and waiting for the results. here is an excerpt:

This turned into a bit of a What About Bob moment (i.e.  Bob:  There are two kinds of people in this world those who like Neil Diamond and those who don’t.  My ex-wife loved him.  Dr. Marvin:  You mean to tell me that you are a  paranoid multiphobic personality, but she didn’t leave you? You left her because she likes Neil Diamond?)  OW…OW….  My moment was kind of like “You mean I have been putting all of my efforts, reading books, making plans, spending most of my time caring and nurturing these children and I am disposable?  I can at best be taken out of commission for a while as a mother and at worst be taken to the other side???  So maybe, they don’t really need me as much as I think they do?  Though I have always looked at motherhood as a joint effort with God; I realized more than ever that it is His work and His glory---to help these children achieve their full potential and return to live with Him.  He is at the helm, not me.  I can be a useful instrument in his hands as a mother, but He is not depending on me.  I am depending on Him!!!  My children are depending on Him—and He will orchestrate their education  and mine in mortality in a way that is best for us.  Also, I realized more fully that where I fall short as a parent, the Savior's grace is sufficient for them and me. 

have i shown easton that we are depending on him? have i shown him that no matter what the doctor tells us, this is all temporary but the learning we do from these trials is eternally vital? 

i was lamenting over my strawberries the other day, half dead and lifeless. i had amended the soil, watered faithfully, and yet they were dying.  the rains came thru with cold temperatures and as i watched for days i was quite sure the vision of strawberry jam would be put to rest and that there was no way could they survive the multiple days of awful weather. they went into the rain compromised and weak.  after four days i was amazed to see the leaves a vibrant green and more blossoms than i could imagine.  the vines were spreading and by george, we might be able to eat from our garden this year.  the thought struck me so deep that the harsh weather was exactly what these strawberries needed to make them beautiful and productive.

and so i will lift my eyes, be grateful for the rain, and remember that we are depending on him.

*if you want to read more about my friend jen and her unselfish documentation, you can go here. every post i read of hers i feel like i'm reading a conference talk. she is unmatched in her eternal vision and doctrinal interpretation.*


kate said...

oh heidi. i am so sorry to hear about your sick little guy. your perspective is inspiring, and just what i needed to hear tonight. watching our kids suffer is so much worse than going through hard things ourselves. i sure hope they figure out something soon so he can get some relief.

emily ballard said...

Inspiring and heartbreaking at the same time. Hoping you find answers to help Easton soon; in the meantime, priceless lessons of being the mother. I love, love, love what you (or your friend) said about Him being at the helm, not us. I've had quite a few talks with Steve about this lately.

And I'm hoping our half dead sod can recover as well as your half dead strawberries. . . the water was shut off for a week due to an oversight with the construction next door.