Dear Heavenly Father,
Fifteen years ago, at 8:09 in the morning, our surprise third baby – Jeffrey – made his appearance. He arrived two weeks early… both a bummer because my own doctor was lounging far away at the beach and a blessing because we had two extra weeks to enjoy our gorgeous little guy in blissful ignorance of our true assignment. Thank You for that.
‘Halo’ placed by adoring big sis, Katie… before the diagnosis
Just as You planned, Jeffrey was as beautiful as his older siblings, Matthew and Katie, and such an easy, happy baby. He didn’t complain about anything, and if he did make a request, he did so almost apologetically. I’d never seen anything like it but figured it was our reward for taking on new parenthood, planned or not, at our age!
Nine days before Jeffrey’s two-month well-baby checkup, our dog Duffy was run over by the mailman in front of Matthew and Katie, providing us with a bittersweet opportunity to discuss life and death, heaven and angels, and Your plans… always purposeful, if not always understandable by mere mortals. At least at the time.
Eight days later, (my doctor brother) Paul checked Jeffrey and his abdominal breathing at Randy’s request, determining with somewhat unsettling reserve that our perfect baby would likely be referred to a pediatric neurologist the next day – the day of the well-baby checkup. Irony, much.
Without an iota of hesitation, the mysterious ‘blissfully-ignorant’ fog that had encompassed me since the discovery of the bonus pregnancy was replaced by an imagination from Hell. In the middle of the night before Jeffrey’s fateful no-longer-well-baby checkup, I started scribbling frantic notes in the midst of a genuine panic attack. That’s when I feared Duffy’s death might have been a rehearsal for what was coming.
It was.
In a heartbeat and with a diagnosis of a severe case of the deadliest form of spinal muscular atrophy, life changed for all of us blessed with this opportunity to witness faith and the power of prayer. This assignment, for which none of us would volunteer, forced us to abandon our comfy spots in life, digging in nooks and crannies we didn’t know we possessed for the strength, endurance, optimism, and courage to tackle this assignment You’d given us. I thought for a while that You were checking to see how we’d do, but I realized You knew all along… and that that was why You blessed our family with such a perfect angel. Well, actually, a perfect family, period.
Sharing angel secrets with his favorite captive audience siblings
Fifteen years after holding our precious, joyful Jeffrey for the first time and almost fifteen years after holding him for the last, there are still no words to adequately express my gratitude for our family’s chance to honor You and better comprehend the sacrifice of Your own son. Do I want to see SMA obliterated? You know I do, but I expect the blessings of our special assignment to continue until we no longer need our earthly shoes. Besides strengthening our family in ways only adversity can, SMA has introduced me to some irreplaceable friendships and the chance to meet some true heroes.
So for the ‘infinity’ time, thank You for sharing such a priceless gift and allowing us to witness the real meaning of life… and death. And love.
Happy birthday, sweet boy. I know you and Papa are having a grand celebration, starting with the amazing storm from ‘nowhere’ (ha) last night.
Mama ‘Lucy’
Almost 15 years ago, we were knocked off our proverbial props with the words, ‘spinal muscular atrophy,’ or SMA, when our beautiful 8-week old baby, Jeffrey, was diagnosed with a severe case of the deadliest form. In 1997, no one offered hope for this progressive neuromuscular/motor neuron disease because, honestly, there was none to be found in the medical community. That didn’t stop us from trying to prove the naysayers wrong by whatever means didn’t hurt our baby… intentionally, anyway. We were on our own in seeking out a ‘fix’ for this genetic killer and took our assignment seriously.
After the diagnosis, my mama duties were gradually superseded by the plethora of nurse duties until we declared an end to the guinea pig days, thanks to an unnecessary nightmare courtesy of a medical ‘expert.’ With the exception of palliative intervention (suctioning, blow-by oxygen, and morphine), an incredible support system of family and friends, a fantastic hospice nurse, and steady prayer, we let Jeffrey be a baby, and I felt more like a mama again. It didn’t last long, but how (bitter)sweet it was.
The day Jeffrey let me know he was ready to play with the angels, I shifted gears once again, this time into unthinkable territory. After spending months trying to keep Jeffrey safe, healthy, and happy, it was time to help him replace his earthly shoes and a spot on my lap with official wings and a spot in heaven. It was the ultimate transition in terms of his well-being. Ours? Not so much. But our little guy was in the perfect place, and it doesn’t get better than that.
Fast forward to SMA families today. The diagnosis is still devastating, but while SMA hasn’t lost its claim as the leading genetic killer of children under two, there is hope now, thanks to some protocols demonstrating actual, encouraging results. Clinical trials and ongoing research are yielding some exciting potential as well. As long as newly-diagnosed families have access to physicians reasonably familiar with SMA, fellow SMA families in real life and/or cyberspace, and reliable resources, the outcome of a Type 1 diagnosis isn’t always automatically carved in stone as it was in 1997. At least not always quite as rigidly.
And yet in the end, each family must still muster a way to get from Point A to Point B on this life-altering journey. What works for one SMA family won’t necessarily work for another. It’s up to the parents to determine what’s best for their own children and decide what course of action to take.
There is more than one way to take action in the world of SMA. Some families assume a proactive approach to this daunting task, concentrating on life and immediately investigating and employing various protocol options. Others opt to keep their precious little ones content and comfortable with a goal to ease the transition from ‘here’ to ‘there’ as much as possible.
Avery Canahuati was diagnosed with Type 1 less than a month ago. Her parents came up with a ‘bucket list’ for Avery’s projected short earthly time, and the project and blog went viral. I was floored and thrilled to see this unique idea appear online on the Yahoo and Fox News pages (and no telling where else)! Finally – a significant, much-needed and appreciated awareness boost to SMA!
Thanks to the daily insanity around here, little did I know that the bucket list was generating mass turmoil behind the scenes in the SMA family. I don’t know details of the divisiveness, though I sensed the gist of it in a few posts I stumbled upon. It seems that some SMA families who have focused on their children’s living resented the family’s to-do list in preparation for their baby’s dying and the media attention it garnered without also featuring the options available and stories of triumph over adversity in the SMA family (granted, there are many!). Some families who opted for palliative care, some of whom didn’t get a chance to do otherwise, were hurt because of some insensitive remarks and accusations uttered in the skirmish.
Grief, panic, tenacity, faith, frustration, fear, hope, stress, courage, determination, and exhaustion in all forms are familiar to every one of us in the SMA family. Regardless of which path we choose to follow with our little ones, the decisions are relentless and never easy. Ever. We need to try to remember that.
Over the past 15 years, the SMA family has been impressive in terms of achievements and unwavering support to others. There has been discord before, but most in this family act like adults and refocused on the common goals. I’m not sure how long it will take for these recent wounds to heal, but I’m optimistic that some good will come out of the discourse sparked by a bucket list that snagged some substantial PR. Until further notice, I’ll remain confident that we’ll realize once again that we’re all doing the best we can. As my mother said many years ago, this assignment is not for wimps.
The bucket list project took a sudden and unexpected turn yesterday afternoon when sweet Avery earned her wings. Many thoughts and prayers go to her folks for the path ahead. Like many SMA families, they’d barely had time to adjust to the diagnosis. Like all SMA families, they did absolutely their very best to ensure that Avery’s time with them was the best possible and that their little gal’s brief stay makes a difference. It already has.
Fly high, Avery, and thank you for bringing SMA to the limelight in your short, action-packed(!) stay. If we’re wise, we’ll utilize your bucket list in the ongoing journey to squelch SMA’s clutches in memory of you, Jeffrey, and an endless list of others.
Meanwhile, if you see a tall, dark, handsome teen about to turn 15, give him a hug….
11-11-11 – 4-30-12
Lucy
Hope you were sitting down when you saw I had posted. I’m sure Lucy fainted dead away.
Here we are nearing the end of April and life has not slowed down. Kevin has mere weeks left of his senior year of high school, a fact I’m finding it hard to wrap my brain around. Senior pictures came in last week:
When did he start looking so grown up?
And not to be left out, Pandy got into the action, too:
She was a good sport about sitting on walls and such - as long as Kevin was close by
The big news around here is that Kevin was accepted to N.C. State University! And even though State is the arch rival of my alma mater, I’m over the moon because it’s a great school AND it’s 10 minutes from our house! This means that the college commute will be shorter than the high school commute. Woo hoo! He plans to major in English with a concentration in creative writing and minor in Film Studies. Pandy has visited the campus a few times with him and is equally excited about their next adventure together. Next week, we meet with the Disabilities Services Office and really get things in motion. I’m trusting they will know exactly what needs to be done and when. I have already learned that they have no use for me. Kevin is the only one they will talk to – as it should be. I have a feeling we’re all in for quite a ride.
We celebrated his graduation early by taking a Spring Break trip to New York City – actually to Broadway to fulfill one of his dreams. He saw “Phantom of the Opera” and “Wicked” and is still talking about both. I’m so glad he had such a great time and that his expectations weren’t dashed. NYC is not the best city for a wheelchair and we ran into more obstacles than I had anticipated, but we worked it out for his sake. My favorite moment of the trip had to have been when Kevin was drooling over books and scripts in a shop near Times Square and debating over whether to spend $30 on a particular book. About that time, the owner walked by and said “It’s $1.” We looked at him kind of funny and he said “I’m spring cleaning. It’s a dollar.” And off he went to tell the clerk up front that Kevin owed him $1, no tax. That act of kindness made up for the much-anticipated trip to a comic book store, which we found to be up some very steep stairs with no elevator.
Kevin and Glenn in Times Square
And now we’re on to the next adventures … graduation in June … college in August … and DD’s wedding in October!
Ethel
(Edited to fix some full-moon spacing. Oh, it’s not a full moon? Hmmm….)
Cuttin’ to the chase:
1. I called the office of a ‘specialist’ at 3:3o this afternoon and received a recording stating their normal business hours (8:30-5) and that if it’s not an emergency, I should call back within normal business hours. Well, alrighty then.
2. As we were down to the last few raisins in our possession, I rummaged around for something else relatively nutritious to add to my oatmeal. I spied the long-ignored bag of prunes in the fridge door and decided they’d work just fine. They worked so fine, I repeated the combo daily until the last prune fell into the bowl a couple of weeks later. Since we’d had the bag for a LONG time, I thought I check the expiration date (I know, what’s the rush…). Oops – they expired in January. Of 2010.
3. In the news: Man saws off own foot to continue receiving unemployment benefits. Yes, that’s right. AND…
The kicker: according to the paper, being footless does not necessarily qualify Url for unemployment compensation. Bummer.
4. Also in the news: Virginia man, 37, receives first comprehensive face transplant. Amazing.
5. On March 15, Scott Sniezek discovered a fire at home while taking care of his 18-month old son, Ford, who has SMA. Scott got Ford to safety and stayed with him, while Grandpa Dennis rushed in to rescue every piece of Ford’s essential equipment. And then he died. Read this beautiful tribute to Grandpa Dennis, then visit the Sniezek Family Help Facebook page.
Grandpa Dennis and Ford
6. Randy’s been busy assembling two beehives for our next adventure – beekeeping! He went to bee class, passed the written and hands-on test (‘cuse me, that makes him a certified beekeeper), and won a beehive! Bee fact: If you end up in their hive (where you don’t belong), the bees will kill you, cover you in propolis, and keep working. I think I can remember that.
Mr. Certified Busy Beekeeper
7. An auction to benefit B4SMA (Blankets for SMA), a fantastic program providing blankets and quilts to SMA families, starts Sunday, April 1. Included in the list of terrific items up for bid:
~ A 2-night stay in our Angel Mountain Cabin; available for bidding April 1-30. Click here to bid.
~ A copy of The Jeffrey Journey (book about our time with Jeffrey) and Dreams for Jeffrey (lullabies my mother wrote for Jeffrey); available for bidding April 15-30. Click here to bid.
~ A 4-CD collection of my mother’s original music: Dreams for Jeffrey, Grief: Loss and Recovery, The Story of Noah’s Ark, and Dancin’ and Romancin’; available for bidding April 1-15. Click here to bid.
8. Ethel and Kevin are still somewhere in the clouds. Or way beyond.
Yikes to the time, which may or may not be within normal business hours. Off to feign competency in the kitchen….
Lucy
