Today I stayed at work until 4:30--2 1/2 hours after I am supposed to leave--then had to make my way through rush hour traffic from downtown to the outskirts of the city, where I live. I picked up Colin by 5:30, went home, gave him his "down time" with the iPad, said hello to Dylan (who was waking up from a too-long nap) and his nurse, Rhonda, a red-haired woman with Betty Boop scrubs and a high-pitched voice who loves on him three times a week.
After heating up leftovers and feeding Colin and me, I set Dylan up to feed, gave Colin a treat of rainbow sherbet, and looked over Colin's math homework. This was going to be a long one, especially with Jason out of town.
Getting Colin to focus on math after a long day is painful for both of us. I tried to make up a game out of three-number addition (as in adding three one-digit numbers) using his hippy-hop, in lieu of actually having a hint of how it is being taught in class. Besides, modern pedagogy is girl-centric, I keep hearing--boys need activity. After the hippy-hop experiment failed (hard to keep track of bounces when you're also counting up from a number), I simply leveled with Colin. "We're just going to have to figure these out, one by one. And you need to focus. We can use pennies if you want. And we'll take two-minute breaks at the end of every row."
I knew he was pained by this exercise. But, he sat down and worked through them with me. Sometimes we used fingers, sometimes pennies--I even let him draw circles if he had wanted to. He was so happy to be able to choose his method (something that seems to be discouraged in school) that he focused well and worked through them more quickly than I anticipated. After he got into the groove, he even recalled several two-number sums without counting, which got us to the final adding step more quickly--and that made us both jubilant. We finished over half the worksheet tonight. Tomorrow's a long day with an early start.
All this time, my Dilly is watching TV and making happy noises. He gets the short end of the stick, with regard to attention, when we have to do homework into the evening. He suffers when our schedules get too busy. But he just smiles big, babbles and spits raspberries, and loves our every touch--even if it's just on a break between rows of math problems.
I am supposed to be parttime at work still, but my commitment has had to expand out of sheer necessity; my department is in survival mode nowadays. But, I realize that many people do this every day after their full time jobs--with two or more fully functional kids or even kids with special needs--and with spouses who travel. And they survive. I wish I knew their secrets. Giving up sleep, perhaps?
But Dilly's time is precious--more so than most of ours--and quality time with Colin, devoid of school pressures or hounding to get through shower and teethbrushing, is precious. And both are fleeting, each in their own way.
Please, God, let there be more time tomorrow for something other than the mundane.
Monday, September 24, 2012
Monday, May 14, 2012
Happy Mother's Day
It was a very Happy Mother's Day, indeed.
Last year, Mother's Day fell two days after Dylan was diagosed. Jason and I went to a new church upon the advice of a friend--we had not ruminated about it, researched it, wondered whether it was the "perfect" church, or any of our usual behaviors. We just went. We realized that, in light of our situation, we needed to go somewhere and get down on our knees. Much like people who struggle with addiction and other demons, we had to admit that we were powerless over this situation--we could not change it through any works, plans, or money. This was not a typical response for us, who were apt to overthink religion, spirituality and, well, almost everything. But our pain called for atypical measures.
That day in church, so many people whom we'd never met before spoke directly to our trauma throughout the service. The pastor spoke about mothers who faced terrible, heartbreaking grief and pain over their children, for whom this holiday was not a happy one. He told us to fight for our children, no matter what the circumstance. Even the music minister invited all to the altar who may be "in crisis." I don't know that I had ever heard priests or pastors minister so openly during a church service--especially on this day. A typical Mother's Day service in churches of my past either focused on Jesus' mother, Mary, or they involved folksy jokes about gender stereotypes (women like to shop, men don't, hahaha) or platitudes about how mothers have the hardest job (they do) and advice to the dads to give them a day off (they should).
But no, this church service was not fooling around. At the end, we left in tears.
And Sunday, one year later, I marveled as we drove to this same church, which we kept attending since that Mother's Day in 2011. On that day, we had no idea whether Dylan would still be with us for Mother's Day 2012. But here he is, with us today! He is stable, he has everything he needs to help him breathe and eat, and people to help us care for him so we can take care of Colin, work, keep our family financially solvent. He has drugs from a previous SMA clinical trial to help him retain as much muscle movement as possible. He has his special stroller made just for him, and his little yellow doggy, and daddy's whiskers to tickle his feet, and mommy's leg stretches and smothering kisses. He has his iPad games and willing family members to prop his forearms up to help him touch the screen.
I still left church in tears on this Mother's Day. The pastor gave an equally stirring service about the tribulations and sorrows of two different mothers in the Bible--which seemed, yet again, to speak directly to us.
The difference between last year and this, though, was that I did not worry about whether Dylan would be with us next Mother's Day. I simply basked in my greatest gift--the delight of seeing God's grace embodied in Dylan's beautiful face, smiling at me yet another day.
Last year, Mother's Day fell two days after Dylan was diagosed. Jason and I went to a new church upon the advice of a friend--we had not ruminated about it, researched it, wondered whether it was the "perfect" church, or any of our usual behaviors. We just went. We realized that, in light of our situation, we needed to go somewhere and get down on our knees. Much like people who struggle with addiction and other demons, we had to admit that we were powerless over this situation--we could not change it through any works, plans, or money. This was not a typical response for us, who were apt to overthink religion, spirituality and, well, almost everything. But our pain called for atypical measures.
That day in church, so many people whom we'd never met before spoke directly to our trauma throughout the service. The pastor spoke about mothers who faced terrible, heartbreaking grief and pain over their children, for whom this holiday was not a happy one. He told us to fight for our children, no matter what the circumstance. Even the music minister invited all to the altar who may be "in crisis." I don't know that I had ever heard priests or pastors minister so openly during a church service--especially on this day. A typical Mother's Day service in churches of my past either focused on Jesus' mother, Mary, or they involved folksy jokes about gender stereotypes (women like to shop, men don't, hahaha) or platitudes about how mothers have the hardest job (they do) and advice to the dads to give them a day off (they should).
But no, this church service was not fooling around. At the end, we left in tears.
And Sunday, one year later, I marveled as we drove to this same church, which we kept attending since that Mother's Day in 2011. On that day, we had no idea whether Dylan would still be with us for Mother's Day 2012. But here he is, with us today! He is stable, he has everything he needs to help him breathe and eat, and people to help us care for him so we can take care of Colin, work, keep our family financially solvent. He has drugs from a previous SMA clinical trial to help him retain as much muscle movement as possible. He has his special stroller made just for him, and his little yellow doggy, and daddy's whiskers to tickle his feet, and mommy's leg stretches and smothering kisses. He has his iPad games and willing family members to prop his forearms up to help him touch the screen.
I still left church in tears on this Mother's Day. The pastor gave an equally stirring service about the tribulations and sorrows of two different mothers in the Bible--which seemed, yet again, to speak directly to us.
The difference between last year and this, though, was that I did not worry about whether Dylan would be with us next Mother's Day. I simply basked in my greatest gift--the delight of seeing God's grace embodied in Dylan's beautiful face, smiling at me yet another day.
Monday, May 7, 2012
One Year Later
I can't believe it has been a whole year. One year. It was one year ago today when we learned you had Spinal Muscular Atrophy.
One year ago when a neurologist whom we'd never met before tested your little legs, your muscles and your nerves. When he was done, he gently but nervously told you how good you were for him. Then he turned to us and revealed the suspicions he had had since I first took you there four days before, but he couldn't yet confirm. He gravely told us that your motor neurons would eventually die because they are missing a protein necessary for their survival. He told us that we would need a pulmonologist. He told us to go see a research doctor in Dallas. He told us to enjoy you for as long as we could. None of these things seemed to string together, to make sense to us, in our state of sheer pain and grief.
One year ago tonight, after you were asleep, we sat on our patio and cried until our faces were stinging, chapped, sore. I smoked cigarettes until my lungs ached from smoke breathed in through heavy sobs.
We got a pulmonologist. We saw the research doctor, who had virtually nothing to offer. We signed up for physical therapy and occupational therapy. In September, we had a g-tube placed in your stomach to feed you when you became too weak to swallow safely. In December, we were lucky enough to watch survive a 2 1/2 week hospital visit for aspiration pneumonia. After that we were able to justify to insurance your need for a bipap ventilator to help your weakened breathing muscles, as well as other respiratory aids and nursing support.
We now have everything we need to help you overcome a cold, allergies, or anything else that is within our control. We now have help for you from home nurses. We know exactly what is supposed to happen as this disease progresses. It all strings together now, and in some fashion, it makes sense. We will never unlearn the things we have learned to do to care for you--the feeding bag and pump, the cough machine, the suctioning of your nasal secretions to keep you from choking.
What we have to do means nothing, because one year later, all that matters is that we still get to see your sweet, smiling face. We get to talk to you, hear the associations you make and the little words you say, help you with an iPad game, position you, swing you, bathe you, and move your limbs. We get to come up with new experiences for you, like the beach or the zoo. We get to watch Pocoyo with you, and relish your beautiful face in its utter delight. We get to make you as happy as possible, every day.
We are blessed beyond our wildest expectations.
One year ago when a neurologist whom we'd never met before tested your little legs, your muscles and your nerves. When he was done, he gently but nervously told you how good you were for him. Then he turned to us and revealed the suspicions he had had since I first took you there four days before, but he couldn't yet confirm. He gravely told us that your motor neurons would eventually die because they are missing a protein necessary for their survival. He told us that we would need a pulmonologist. He told us to go see a research doctor in Dallas. He told us to enjoy you for as long as we could. None of these things seemed to string together, to make sense to us, in our state of sheer pain and grief.
One year ago tonight, after you were asleep, we sat on our patio and cried until our faces were stinging, chapped, sore. I smoked cigarettes until my lungs ached from smoke breathed in through heavy sobs.
We got a pulmonologist. We saw the research doctor, who had virtually nothing to offer. We signed up for physical therapy and occupational therapy. In September, we had a g-tube placed in your stomach to feed you when you became too weak to swallow safely. In December, we were lucky enough to watch survive a 2 1/2 week hospital visit for aspiration pneumonia. After that we were able to justify to insurance your need for a bipap ventilator to help your weakened breathing muscles, as well as other respiratory aids and nursing support.
We now have everything we need to help you overcome a cold, allergies, or anything else that is within our control. We now have help for you from home nurses. We know exactly what is supposed to happen as this disease progresses. It all strings together now, and in some fashion, it makes sense. We will never unlearn the things we have learned to do to care for you--the feeding bag and pump, the cough machine, the suctioning of your nasal secretions to keep you from choking.
What we have to do means nothing, because one year later, all that matters is that we still get to see your sweet, smiling face. We get to talk to you, hear the associations you make and the little words you say, help you with an iPad game, position you, swing you, bathe you, and move your limbs. We get to come up with new experiences for you, like the beach or the zoo. We get to watch Pocoyo with you, and relish your beautiful face in its utter delight. We get to make you as happy as possible, every day.
We are blessed beyond our wildest expectations.
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