Friday, May 31, 2013

A lesson from Miss Jessica

I'll admit it: I'm spoiled.  Like a little child who panics when they can not see their father and runs around frantic until they find him and are assured of his presence, so do I.  But like any good father who will assure their children he will not leave him, so does my Father.  I cling to Him, panicked and lacking faith, asking why He left me.  Of course He never left in the first place, He was just giving me some room to see what I would do, to allow growth.  But I am too small for room, I need constant re-assurance, I need my little hand in His big one lest I doubt.  I can run off for an instant but lacking faith I must constantly come back to make sure He remains, just as a little toddler who is just having her first independence in the safety of her back yard.

And in my Father's goodness, He allows me to remain in this state of toddler-hood, just barely able to walk.  He lets me go, never allowing me out of His sight, but when I am panicked and searching for His face, He races back to show Himself.  So He did yesterday.  After writing about my repulsion and subsequent shame, my panic, my dizziness with doubts and questions, He set up a very special meeting yesterday.  We were privileged to meet Miss Jessica.

Miss Jessica sat in her wheelchair, arms and legs still like stone, her body small and undeveloped from decades of non-use.  Her head supported, giving room for her trach and vent tubing to wind behind her chair.  I walked past her and she lamented about how unfair it was that I had a pager like she did.  He mother patiently explained everyone waiting for the doctor gets one and it is not unfair.  I turned, swallowed hard, and spoke to her.  I told her my name, she told me hers, then I told her I had a son just like her with a trach and a vent at night.  With an adult body and a blessed child's mind she squeeled in excitement.  I brought Dominic face to face, or should I say wheel to wheel, with her and her oohs and ahh's commenced.  She poured over his blue eyes, his blond hair, his little trach and tiny chair.  She was full of delight to learn that his vent is exactly the same as hers.  Then the older kids reluctantly came over, face downcast with eyes shyly staring at our new friend.  I introduced Miss Jessica to them and she went on and on about how handsome the boys were and how sweet and precious Mary is.  Mary whispered Miss Jessica was too small to be a "ba-dult" and I explained she is just like Dominic, only 40 years older.

We sat and talked for quite some time, taking turns between her delightful forced speech (talking with a trach and vent is difficult and laborsome) and the experienced, tired but happy eyes of her mother.  She lives at home with her mother and father and sleeps in their room.  She excitedly told me about her nieces and nephews and it was apparent she gained much happiness from her siblings who had grown and moved out, having families of their own.  She stopped, needing a drink and her mother brought the straw to her mouth.  She was unable to even do this for herself, yet she was happy.  She radiated joy, and if one were to be able to see past the exterior for one instant, one would see how easily she captivates one's heart.  I was sad to leave her when the nurse called us back, wanting to sit and be with her all day if I could.  She was sad to see Dominic go but was delighted that I wanted to take her picture.  She just couldn't believe all of the attention she was receiving.  My Miss Jessica, the face of my Father, restored my hope.

People often say they wished God would just talk to them, just tell them what to do.  He does, He just doesn't use our words, he uses His.  Yesterday Miss Jessica was His words, His embrace, His re-assurance that everything would be okay, that He is near, He is faithful, He will never abandon us.  With Him is safety, joy, protection.  Though we might fear we will drown from the torrent that falls upon us, He is there, allowing us to grow in love and confidence in Him, ready to extend His sure hand to save us before we fall.  I am embarrassed for loosing hope, loosing faith so quickly, but moreover I am joyful knowing that my Father does not despise my smallness.  Just as a father may sigh at the constant need of his children, still he secretly glories over the fact of being needed and the helplessness of his children.  If we panic, we need to only stop and do what I tell my children to do: remain calm and look around, I am never far off.
Sweet Miss Jessica and her buddy, Dominic

Thursday, May 30, 2013

More thoughts about the school

Who needs a dog-pile when you can have a Dom-pile?

There is a war going on in my head about my last post, "A school for Dominic."  My left brain argues this school would be so great.  It would let him be around his peers, allow him to experience care from other caring people, get him hooked into the community for the profoundly disabled.  My right brain says: "so what."  Which brings me to the ever present argument all parents have with themselves: am I doing the right thing for my child, both NOW and in 20 years?

The other day my kids and I ate at a pizza place with a good friend.  While we were there clients and care takers from the state school (group home for the disabled) walked in.  I suddenly felt flush and nauseated.  "Oh my God, Dominic will grow up... and be like these people."  Suddenly shame rose in my throat for being adverse to these people.  Aren't these people the ones I've been given a passion for?  Aren't these people the face of God in this backwards world?   I was struck motionless, staring, scared.  I realized Dominic may just survive, may make it to 50.  Then what?  What will we do then!?

I turned to my friend who has grown up with caring parents who both worked with people who have disabilities throughout her childhood and lamented about this situation.  Somewhat beginning to panic, she calmly told me Dominic wasn't going to be institutionalized.  We would care for him, it would all work out for the best.  I discretely observed as the clients and the workers sat down, got their pizza and ate.  The workers said nothing to the clients outside of what was necessary.  They sat at the table either silent, talking to other workers, or looking on their phone.  I literally had to hold onto the table to prevent myself from getting up and yelling at them to interact with the HUMANS they are sitting with, not their phones.  The initial fear I felt was replaced with anger, repulsion, and a certain sense of protection for the clients.  Using all my will-power, I held back from grabbing their phones and throwing them through the window.  If you want to ignore the people you are eating with by living your virtual life, fine; but don't do it to people who can not ignore you back.  They sat in silence and ate.  No warmth, no conversation.  Alone in a group.

This brings me back to my original point.  Would placing him in the school I spoke about in my last post just be entering him into the system?  Would I grow accustom to not caring for him, letting him be someone else's responsibility, someone else's problem, and make the decision when he becomes an adult to put him in a group home easier?  Is the school the best for him?  What goals do we expect from him when he becomes an adult?  Can not his parents, who would die for him this very instant, not do a better job in educating him in what he needs to know to be as independent and successful as possible in his adult years?

Dominic likes two things: being around his family and going to mass.  Can he not learn all he needs by doing these two things faithfully and well?  As a wise man often tells me, we don't have to make every decision right now, we have time.  A group home may be totally appropriate and the best decision for some people, but isn't that truth directly the result of the break-down of our family units and the extended family who are meant to come to the aide and take up the slack when needed?  I fully, whole-heartily expect my children to pick up the slack when Mike and I are no longer able to care for Dominic.  We are raising them intentionally to care for others at great cost to themselves, whether that be their own children or others who are dependent.  I hope they become men and women who will forgo vacations and nice cars in lieu of providing a stable, loving, and faith-filled home for their families and for Dominic to live.  If we can accomplish this goal, I say we have succeeded as parents.

We'll see about the school... we have time.

Wednesday, May 22, 2013

A school for Dominic

Dominic enjoying some Gram time :)
Two days ago we were fortunate enough to tour a school exclusively for the severely disabled.  Although Dominic is not yet 2, going to this school means moving our entire family near it so we wanted time to plan, in hopes of avoiding any "chicken with its head cut off" chaos, which is quite typical for our family.  And besides, children with severe disability can start school at 3 rather than 5 like typical children, so really we only have a year.

I'm not quite sure how to start this post, or what to say.  I hope this is not offensive to anyone.  But keeping loyal to my mission of allowing a peak into life with a special child, I must give myself to you honestly.  The feelings that swell in my throat when I think of that hour spent in this school can be summed up in one word: "sucky."  Forgive me for not being eloquent in my speech, but you see, my mind doesn't think that way.  It has become accustomed to brutal honesty, and if I'm to remain faithful to myself, it is this same brutal honesty I need to share with you.

Now, don't get me wrong, the school is amazing.  Everything I've heard of it from fellow professionals is right.  It is one-of-a-kind, amazing, caring, nurturing, fostering the dignity of the child with special needs.  To the mom however, all this therapist mumbo-jumbo jumped right out of the window.  Being there hurt.  You know when your feelings are hurt to a degree that you have physical pain in your heart and stomach?  As a professional coming into that building to work, I would have been in heaven.  As a mom coming into that building, I felt like I had been kicked in the throat.  Let me explain...

We walked into the building and immediately saw the hall lined up with wheelchairs, one after another.  As it turns out, every child in the entire school, except for 1, is in a wheelchair.  Furthermore, they don't believe in allowing the children to sit in their chairs all day at school.  We move  from position to position throughout the day, and they make sure the students do the same (**score 1 for promoting dignity of "special" kids**).  We walked into the office and everyone, including the principal, stopped their work and came out to greet us.  They spoke directly to Dominic first.  Every single staff member went down to his level, touched him, and spoke to him like a person.  Everyone remembered his name and even started to call him by a nick-name, "Dom."  There was not one employee who greeted us (the parents) first, and this is the way it should be.  Everyone oohed and aahed over him, talking about how big and handsome he was and how they hoped they could work with him.

Then we walked down the elementary hall and went into every classroom.  There was one teacher, one assistant and 4-6 students in each room.  Every student was in some sort of therapeutic seating chair/device or standing frame, doing some sort of appropriate task.  In one classroom, there was a little girl who was deaf-blind who could sit up on her own.  She was shaking a bottle of water mixed with glitter and holding it right up to her eyes so she could see it.  Another girl was lying on the floor putting shiny beads into a basket.  Another child was lying on a mat in a stimulation corner, batting at the toys hanging from the ceiling.  The teachers were attentive.  Everything was appropriate.  A lump swelled in my throat.

We went to the next classroom.  A child was sitting in a special chair, also deaf-blind, happily trying to see who the intruders into his classroom were.  One boy was sound asleep, postictal due to having a seizure that morning.  Two other children were in standing frames, getting ready to go for their group water-play activity.  I felt sick to my stomach.

Then we went to the third room.  A man who volunteers his time was playing the bongos, doing a drumming group with the middle schooler's and high schooler's.  The sound was intense, what I imagine natives dancing around a fire in the Amazon would hear.  I walked in, the lights were dim, the sound was pulsating with the drum beats.  I saw 10-12 older kids with severe disability, all in wheelchairs.  The child closest to me was trying to move his disobedient arms to help beat the drum.  Another child, next to him was holding what looked like a shaker, trying, and apparently enjoying, to ad to the music, though without much success as it would appear to the outside world.  Dominic smiled, he liked the deep, loud rhythm.  I ran out, unable to control my emotions any longer.  I stood in the hallway and bawled like a little baby until a sweet woman saw and walk up and embraced me.  She told me it would be okay, and that Dominic would be happy there, that she would make sure he would be happy. 

After I composed myself, the tour continued.  The gym had a giant blow up mat the kids can lay on to feel movement and all sorts of other gym equipment that is appropriate for such low-level children.  The play ground was totally wheelchair friendly, including the wheelchair swing and the net swing where you can lay a child in and swing him.  We finished by sitting in the teacher lounge and talking about logistics, age for enrollment and so forth.  The sweet OT who gave us our tour said Dominic would have to be evaluated to come here, but he obviously would qualify.  My immediate silent gut reaction was "what?  He's not like these kids!"

As I said before, this is any pediatric PT's dream job.  When I was working, I loved to work with children such as these.  They are so simple, so good, so loving, so challenging.  They come with complex histories that satisfy when understood and defeated.  It is joy helping a child do something they were never supposed to do.  I gloried in breaking the chains of a prognosis, being behind the child as they succeeded and proved that doctor wrong, being beside the mom as she saw her child beat the odds and rejoice.

Perhaps I will eventually think like-wise of this place from a mom's perspective.  The harshness of seeing these kids, so many in one place, who live in disobedient bodies with minds that have betrayed their inherent goodness hurt.  Mostly, it hurt because I had to admit that these kids were my kid.  My child, though now still a toddler, is like these children.  This is his peer group.  As the time goes on the gap between Dominic and the other kids his age grows.  We marvel at his slightest accomplishments.  He are impressed when he looks at something, when he turns over to his tummy, when he holds his head up, when he reaches out to touch our face.  But he is almost two.  He should be running, jumping off of things, climbing, getting into trouble with his siblings, sitting in time out, potty training.  He is a perpetual baby.  The reality of this fact, perhaps for the first time so concretely, lanced my heart, delivering a near-mortal wound.  Having to face the reality that he really won't get better (unless a miracle is willed by God), and that he belongs in such an amazing school was daunting, discouraging, and sad.

I do not curse his impairments, nor the God who made him that way.  Still, I love his eyes that can not see my face, his ears that jumble my speech, his mouth that can not say "mommy," his throat that will not swallow, his heart that presents holes, his tummy that has to be fed directly, his little insides that were made backwards, his arms that can not reach for me, his feet that can not run to me, his mind that can not think clearly.  I love him, all of him, just how he is.  I praise God for giving him a broken body, a broken mind but a whole soul.  I praise God for allowing me to hurt, this is a blessed poverty.  I praise God for my broken heart, as I realize so many people do not take the time to suffer with the poorest.  I praise God for allowing me to be joined to our Blessed Mother who also watched her Son suffer, I am never alone in her company.  I praise God, for in His goodness He has given my children the opportunity to grow in charity, humility, and patience by being raised with such a saint as Dominic.

We have time to decide if Dominic will go to that school.  Most likely he will and most likely I will learn each child's name, their personality, their likes and dislikes.  Most likely I will fall in love with each and every one of them.  Most likely I will rejoice with their mothers and mourn with their mothers.  Most likely I will become family with the amazing people who work there.  Most likely I will work tiresley to promote the dignity of every last child in that building.  But for now, I still hurt a little, still mourn Dominic's reality.  Still glory in his innocence, his goodness, his being made perfect in God's eyes.

Totus Tuus!

Tuesday, May 7, 2013

"He isn't finished"

I am reading the biography of Jerome Lejeune, the French geneticist who discovered the cause of Trisomy 21, or Down Syndrome.  I'm only on page 11, but even so, I would recommend this book to anyone who is breathing.  The author makes the statement that mother's with children who are affected by Trisomy 21 have, in the past, referred to their children as "unfinished."  This statement stabbed my heart and caused my face to flinch.  "Unfinished."  I would argue that this opinion of an individual with disability, either genetically or otherwise, as being unfinished points directly to their inherent goodness and happiness.  It is in fact a positive.

Isn't it in our state of being "finished," of being "perfected," born normal that we must suffer?  Our minds, all too often, are too complex and distracted to see what really matters.  We look for fulfillment in all sorts of places, always coming up short it seems, until we force ourselves to become small like one of our "unfinished" brothers or sisters.  In our complexity we reason and struggle and fight with true fulfillment, true happiness.  We can see the source of happiness, but we don't want to look that way.  We squint our eyes to deform the true Light and falsely convince ourselves that the manufactured light, the fluorescent lights of the world will fill that dark space in our hearts.  The "unfinished" don't do this.  They can not lie to themselves.  And they are, in that sense, more perfect than we.

Their lack of complexity, their lack of "completion" enables them a sort of super-power: to see what's really there.  They must trust, with complete abandonment, the people who care for them.  They rely on others for their every human need, sometimes down to the most basic, uncomfortable necessities of life.  Their humility is great, but unashamed due to their simplicity, they trust.  They do not blush when their adult diaper is being changed, they know no better.  Dominic does not worry that he will be dropped, that he will eat, that he will be loved.  He trusts us completely.  He only knows goodness.  Even through the pains he has endured, the surgeries, the tubes, the lines, the tortures of gasping for breath when his trach is being changed, of being poked repeatedly by nurses, he trusts.  He trusts us.  Just as we are called to blindly, completely trust in the goodness of God in all circumstances, so the "unfinished" unreservedly trust that their care-taker wills the best for them.

They do not waste their time on empty past-times.  They are not consumed with facebook posts or the latest tv series, both of which fill our real, deep longing for God with temporary, artificial fluff.  They live in real life.  They love the people who love them, and often the people who do not love them.  They smile, they laugh, they interact as best they are able.  They want real relationships, to talk to people, to be hugged, to be loved, to be held.  They bring us "completed" individuals out of our cold, manufactured shells and force us to live in real time.  To face the hard questions head on.  To do what we were made for: to love another person, not a virtual person who can not love us back.  We give them 1% of ourselves, they give us 300% of themselves.  We add a drop of goodness to their sea of perfection, they consume our wickedness, our selfishness, our darkness and allow us to see that real, warm Light, that tangible Goodness for which we all seek.  If we only allow our hard-selves to be  submerged through loving these "unfinished," drowned in a sense by the only true source of Goodness, we can resurface with new eyes, ready to love as one of the "unfinished," the simple, the perfect people.

Totus Tuus,