Sanity

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Anyone who has gone through a long season with a crying child knows it’s hard to keep your sanity.  So here’s my processing of sanity during these many days, weeks, months.   

I’ve spent several hours today trying to get one child to have a normal bowel movement, through red-faced tears and screams.  And several hours on three pages of math, just because we lost our rhythm with school when life was demanding more than math from me (and certain little girls don’t like math).  There were routine shrieks of hurt from my girl who got the short end of the stick with connection with Momma these past two years. It comes out in loud play and the quiet alike and those five minutes my hands are free.  “Why are you crying?” “Because I love you, Momma.”

Weeks and weeks of crying and hurting insides from one and a hurting heart from another, like a wheel night and day that won’t stop.  I search and reach for something to hold me steady.

So I watch the robins peck the ground from the kitchen window and grasp for sanity.  And I look in that snot-covered, teary eyed face and set my face hard to be held down sturdy.

Love keeps me up in the night, always.  And I nurse my boy whose body allows him so few comforts.  I’m sure he smells like me from so much cuddling.  Loving always in the night when there’s no other way means love in the day is a dull tool in my hand.  I’m harsh and I’m lost in brain fog and ticking off the task before me.  I settle in for sanity in my prayer book and the icon of the Shepherd with his one sheep over his shoulders.  I always see that sheep as my son who can’t use his legs yet.  But today, Christ reminds me that it’s me being carried, too.

It weighs on me, as I syringe in the water for his belly and pull his heavy wheel chair outside for beauty and air.  It weighs on me, as I hear my own critical tone towards my girls. It weighs on me, what I want to give my children of myself and what actually comes out of me with thick frustration and exhaustion that suffocates those good fruits.  I’m not all of what I want it to be- but this is mine, and it’s my gift.  Life.

Thank You, my God, for beauty; I long for it, I look for it. Thank you for existence.

Chipmunks in the morning, scurrying on the patio that delight every single face.  The very green grass and flowers that pushed up and surprised us all.  Nighttime snuggles when the day is over and squabbles are put to rest.

Today I sing my loudest, over his painful screams, to bring my being its true sanity:

“Bless the Lord, o my soul!  And all that is within me, bless His holy name.”

2016 Reflection

The year has come to a close and if you have eyes that read on the internet, you will find lots of mostly negative opinions about 2016.  My seven year old asked on New Years why we have years.  “That is how we keep track of life as people; it’s how we make sense of time,” was our very basic answer.  I am keeping track of my time here.  This chunk of life has been exceptional- exceptionally difficult, exceptionally beautiful.

In January, the big topic was whether Phineas needed his skull cracked to enable his brain to grow that was dramatically below zero on the head growth chart (this is called microcephaly).  We walked through grief in March as we found out our son has a severe, rare, lifelong debilitating syndrome with an unknown life expectancy.  I bawled my way through Social Security paperwork.  No one wants to fill out unending documents proving you have a disabled one year old.  We dealt with shattered expectations of our life as a family of 6 that we are now rebuilding.

I’ll be honest.  I never expected to have a child with medical issues.  It never crossed my mind.  As a child, I was terrified of people with noticeable disabilities, to the point of feeling like my legs turned to jello and I would shake.  I wrapped my mind around the idea of being a special needs parent, as I wrapped my arms and heart more tightly around my own beautiful boy.

Our big ongoing issue is sleep.  Phineas has been much like a baby with colic at night for 20 months.  I hear of mothers not being able to stand the cries for 3.  He has never had even one week of good sleep in his life.  This list that goes through my mind when he is up screaming is something like this: reflux? neuro pain? seizure? gas? constipation? nightmare? Why is he wailing in pain?    Because of this extreme sleep deprivation, we have had to change or lower our expectations in virtually every way.  My personality, my parenting with my three girls, my eating habits, my understanding of marriage and overall view of life and purpose have all changed.   One of the greatest desires in my heart I have had since high school for my own family has had to be laid down.  I grieve for the things I thought would be, yet grow inside for something greater.  Love wins out over expectations.

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These ideals that I still struggle with laying down are all expectations.  I didn’t think…but I thought…I never knew…. And the joyful realization comes that suffering is where Christ is, right there on the hard road,  enlarging my heart to what is real and true. It is my salvation; that Phineas may be very obviously broken, but we are all truly very broken people.  He is my great arrow, pointing me to Christ, humbling me and blowing away these expectations that have never been real.

In November it was time to have a feeding tube put in.  Before this, I had buckled down and nursed him every three hours around the clock for 18 months to avoid this tube.  My own child, with a feeding tube?  No, never.  I would work hard to grow his oral skills.  And he did grow in them, but not enough to avoid the feeding tube.  He had gained only 2 ounces in 6 months and enough was enough.  Without the medical intervention of his tube, he would not have lived. One month later, he gained weight so quickly that he had very uncommon, very painful complications with his G tube that took 4 surgeons to discover.  The Momma Bear Advocate for my child was alive and well, albeit many tears.  I feel like I have grown up 10 years in just this one.

Five days after his tube was fixed, Phineas was approved for Medicaid.  His case had originally been closed because of one document.  We had to start from scratch and I would not let myself break down over this paperwork again.  Open doors!  These papers and tracking down all these documents are opening doors for my son!  But really, the weight and stress of it all was truly crushing.  When I got off the phone with the Medicaid lady, who said there had been a mistake and we did not have to start over, I sobbed.  I ran downstairs to where my husband was working and sobbed to him that it was over, he was approved.  So many things were now available for our son.

An hour after this highly emotional event, Phineas woke in my arms having his first seizure.  It was terrifying.  Our home filled with EMT’s and my little girls watched in amazement as the men asked questions, inspected their brother and gave him oxygen.  We rode in an ambulance to the Children’s Hospital where he continued to have cluster seizures that I will never forget. Seizures are terrifying.

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From the beginning of November to Christmas, Phineas was in the ER 5 times and the hosptial overnight 3 times.  It was strange adjusting to constant medical surrounds, all the while remembering how much worse it could be.  We still had him.

At the end of all of this, we could not have made it through the year so well without the prayers of so, so many. Several days I could feel the warm protection as though floating on those prayers.  I don’t know how else to describe it.  The physical help of so many that was a loud shout to our souls, “We love you!  You can do this!”, the outpouring of financial help when we found ourselves in a crisis, the close friends who firmly refused to let me be hard on myself on those very dark days (special thank you’s to Cherita and Erin).  My dear parents who have been nothing but supportive, our Priest who spent countless hours with us at the hospital (or buying me food!).

I end with this quote from the Orthodox Akathist of Thanksgiving:

“The dark storm-clouds of life bring no terror to those in whose hearts your fire burns brightly.  Outside is the darkness of the whirlwind, the terror, the howling of the storm, but in the heart, in the presence of Christ, there is light and peace, silence.  The heart sings:

Alleluia! Alleluia!  Alleluia!”

 

Grief in the Library

A few weeks ago I was in the library with all of my kids.  I was tired, as usual, sitting on the floor while my 3, 5 and 6 year old girls played games with the other kids.  Phineas was next to me, his 14 month old belly on the train track rug, with his head in his hands, chewing his fingers.  I still remember my gut curling up inside me and silently watching him.  Watching my three year old play with the play food and chatting with the little girls around her.  Watching the 9 month old baby four feet away from me pull herself up to the play kitchen and stand with such ease, her chubby hands holding the side for support.  I tingled with that pain I’ve become accustomed to and forced the tears to not fall, sting them back into hiding.  Don’t let it come out now; not here.  This is not the place for grief.  All of these moms who have no idea.  Who really breaks down post story time, in the middle of happy kids playing?  Not me, not right now.  So I don’t.

My story, our story, is that my sweet Phineas has a rare syndrome called Foxg1, a genetic mutation that happens in the womb.  As with autism, there is a spectrum of abilities and disabilities, but most kids have little to no speech and very few can walk or sit unassisted.  It is a world of seizures and feeding tubes, of medical equipment and sleep disturbances for these precious Foxg1 kids. We are just at the beginning of our journey and we don’t know what will come for Phiney.  We choose to live on the side of hope in all the challenges he will face (more on that later).

Most days I remain optimistic and hopeful, but some days there is a surge of unexpected grief that comes when the life you imagined for your child doesn’t turn out that way.  As much as I process, as much as I come to learn thanks for what was not my expectation, there are still waves that hit hard in places that don’t seem to hold the grief as they should.  Or do they?

Seeing the little blonde haired boy running right in front of me at the grocery store can grip my heart and I hold tight to my blonde haired boy in the baby carrier, his head laying on my chest, fast asleep.  Again the tears sting, again I choke them back, again I say “no” to letting grief have its way this time.  I want to see my son run like that one day.  But I realize now how I regret not letting sorrow and pain be what it is in that moment.

I see more than ever how taboo emotion in public can be.  What would happen if I did just have a good cry?  Maybe the lady with the toddler sharing the aisle with me would extend compassion.  Maybe not, but I would have grieved a little more, come to grips a little more with my own new reality for my son, would have healed a little more.  I think that’s worth it.  And, I think there’s a great deal we can gain from engaging with the vulnerability of humanity.  I can take part in that.