Monday, December 8, 2008

Oh My Word, My Word. But Upon Starvation, I Will Eat Them.; Advent, Day 8




You should have been there.


All three kids sick at the doctor's office and not a grandma in sight. And, believe me, I coulda used one (ANY ONE -- any old lady with a pulse would have done; even a mean, ugly-looking babushka with a scary mole on her nose would have sufficed; even a screaming, stick-swinging, I'll stick your kid in the corner and make him mop my floors, wicked witch of the west or east would have done just fine. Just fine, I tell you!!


Haven and Gussie were both shrieking, I mean shrieking at the nebulizer mask Haven had to wear in order to curtail his first asthma attack. Gussie was freaked out that our doctor was of Indian descent and kept screaming "brown man; blue buzz cut" (which was funny much much after the fact).

And Simeon. Simeon was actually pretty good just sitting with a smile in his car seat. I was just scared at what he could do any given moment.

It was a blur. We left with 5 prescriptions, a nebulizer machine and a hankering for a big, fat nap (a tankard of ale would have fit the bill as well but I had to wait for that).

So here's the best part. As I was waiting to check out of the pharmacy that sits across the hall from the pediatricians office, a fresh chick of a mom observed me with awe. The sweetheart had a watched me nurse my babe while my older boys sat drinking their well deserved sodas. I was laughing and actually enjoying myself as Haven and Gussie raised their bottles toast after toast.

"What's her name," I nodded to the bundle whose car seat sunshade matched her bonnet that matched her blanket that matched her booties that matched her mom's diaper bag ... a world of pink.


We got talking then we were quiet. As I zipped up the last coat and placed the last toppled bottle of NyQuil back on the shelf, I turned to her and said with a wave over my brood:


"You know, as crazy as this looks, where you are is so much harder."


Her eyes filled with tears.

In a breath, I told her how hard it was for me to bring home my first baby. I told her it was the hardest thing I've ever done. I also told her that it gets so much easier and that I could tell she was doing a really good job.


And as my hand let go of her shoulder, we smiled at one another. And oh, that was the best part.


That and the very large glass of wine I had with dinner.


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Postscript: You won't even believe what came in the mail on the very day of the above described events. A while back I took a blog post about how God uses my kids' ailments to grow me, turned it into a bit of an article and sent it to One More Soul. Well, they put it into their Christmas Newsletter and it arrived in my mailbox on that very day. I've pasted it below [but if you want to order your own copy to hang on your fridge, I've provided the link at the bottom of the page].
I very lovingly dedicate this essay to all of my dear friends and family who stood by us during the difficult times I describe. I also dedicate it to my precious friend Cherie who, with God's grace, has slayed similar dragons for her babies in the past year. Cherie, you are strong and you inspire me.
I'll admit I feel a little odd here about self-promoting as I really did a kick out of OMS including my piece. But the fact is I've never had a problem tooting my own horn ("HONK!!!!!"). Also, I know a few of you would be interested and I'll never get around to sending out copies. So enjoy!


Embrace the Baby:

A Boy or A Girl -- Sick or Well –
Not “Just as Long as it’s Healthy
by Sarah Johnson



When I was expecting all three of my children, kind strangers would take notice of my round belly and ask: “Are you having a boy or a girl?”

To which I’d reply, “I don’t know. I like to be surprised.”

The kind stranger would inevitably reply, “Well, just as long as it’s healthy.”

I’d smile but inside I’d pause -- as if “health” were some prerequisite for this little life fluttering inside me to be a good or acceptable baby. Of course, I realize this statement is given in good will, almost as a modern day blessing. However, after giving birth to two significantly challenged -- unhealthy children, “Just as long as it’s healthy” is a statement to which I now reply, “Healthy or not – I’ll take this baby just the way he or she is … I just can’t wait to have my baby.”

And I did. In August 2004, I gave birth to my first son Haven without complication. He was robust and strong. He introduced me to the remarkable world of motherhood and as a new Catholic I was excited to see when God would bring along a brother or a sister.


We didn’t have to wait long. About two years from Haven’s arrival, in July of 2006, Augustine Ambrose joined our family. “Gussie” was born healthy but shortly after birth, for no known reason, he “crashed” into a state of “Persistent Pulmonary Hypertension” (essentially, high blood pressure that can be fatal in an infant).

Gussie was given a 50% chance of survival and received an emergency Baptism at bedside. He was then taken via helicopter to a top level NICU and spent his first 11 days on ECMO (The Heart Bypass Machine). Gussie battled a range of problems for the following month in the hospital -- from a brain bleed to a collapsed lung to a loss of his suck reflex. But through the prayers of many and the work of world-class physicians, Gussie made a miraculous recovery.

We brought Gussie home a month later -- ashy, gray and small. He had a feeding tube and was in no way a picture of health. But he was mine and I wanted him fiercely. After almost having his little life snatched away, I’d reflect on the comment so many made when I carried him: “As long as he’s healthy” – Or not, I’d think … I just want him the way he is. I just want this baby.

At that point, we were warned Gussie may have hearing loss and be delayed mentally and/or physically from all he’d been through as a newborn. Two years later, I’m thrilled to report he has had no such trouble. A fireball by nature, he catapults over developmental milestones as if they are skipping stones – why crawl when you can run? I wish I could say the same for his new little brother Simeon, born March 2008, but I cannot.

Simeon was born on Holy Saturday with a rare genetic disorder called Noonan’s Syndrome, a condition causing certain physical and mental challenges such as heart defects, short stature, hearing and vision loss and slight mental retardation. Like Gussie, we had no real warning that Simeon would have problems. My pregnancy had been smooth. The ultrasounds revealed a possible clubfoot but nothing else.

So we were surprised when Simeon was born with what doctors described as indicators of a genetic syndrome: low-set ears, a heart defect, webbed toes, and a short neck. Genetic testing later confirmed the diagnosis of Noonan’s Syndrome but no other treatments have been required for Simeon at this time as he is for all intents and purposes “healthy.”

“Healthy” -- what does “healthy” mean anyway?

According to Merriam Webster’s short definition, “healthy implies full strength and vigor as well as freedom from signs of disease.” Aren’t children by nature, lacking in “strength and vigor” simply by the fact they are dependent creatures, looking to others for succor? As far as “freedom from signs of disease,” show me a toddler who makes it a winter without a runny nose and then show me his mother because I’m going to spy on her until I learn her secrets … Because where I come from, sickness is just a normal part of childhood.

From colic to teething to ear infections to spontaneous puking (and toddlers have no concept of aiming into a bucket) – “health” is as elusive in childhood as it is in the rest of life. “Elusive” because, while we should rightly take measures to look and feel our best, health will eventually elude us all – we’re all going to die. And yet in this common statement: “Just as long as it’s healthy,” we place a lofty requirement (often unknowingly) – health -- on a tiny baby who has yet to be born.

Am I claiming that health is a requirement in our day and age for a baby to be wanted and acceptable? Unfortunately, according to our country’s abortion statistics: 6% of pregnancies are terminated due to pre-determined birth defects, it must have something to do with it. [FYI: The other 94% of abortions occur for the following reasons -- 1% for rape or incest and 93% for social reasons, i.e. the child is inconvenient or simply not wanted]. (Statistics: The Alan Guttmacher Institute Online Study, July 2008: http://www.alanguttmacher.org/pubs/fb_induced_abortion.html)

As Catholics we are called to cherish and fight for life – all lives from conception to natural death as the most sacred gift of all. King David describes God’s handiwork in Psalm 139 RSVCE: “For thou didst form my inward parts, thou didst knit me together in my mother’s womb.” And the late Pope John Paul II challenged Christians to promote “a culture of life.” In his Ad limina address to US Bishops in October 1998, he said: “Society must learn to embrace once more the great gift of life, to cherish it, to protect it, and to defend it against the culture of death.” Pope John Paul II went on to explain that the cultures of life and death begin in the heart of man but are lived out in our words and actions.

Nothing could sum up where we are as a society on the spectrum between the “culture of life” and “the culture of death” as our completely acceptable, common day anecdotes. Not only the “As long as it’s healthy” chime but how about the common lamentation: “Two kids and I’m DONE!!” [“DONE,” said with the same fervor one would use to say “I’m DONE scrubbing the toilet” or “I’m DONE with my alcohol addiction” or “I’m DONE receiving Chinese water torture.”]

And while I enjoy finding humor in society’s ironies, I don’t mean to make light of our dire state. Unless Catholics take their work seriously to build a culture of life, we will succumb to a culture of death that is pervasive yet discreet – found in sometimes the most simple of action, word, deed … and anecdote: “Just as long as it’s healthy … ”

So how do we build this “culture of life?”

We can mimic St. Therese of Liseux, “the little flower” and begin in small ways. Holding a door. Extending a greeting. Dropping off a meal. So often, being “salty” -- “You are the salt of the earth” (St. Matthew 5:13) -- is as simple as “Being ready to give a defense for the hope within you.” (1 Peter 3:15)

For me, a small way I have chosen to build this culture of life is to be armed with the proper response when my belly is blooming and the neighbor’s nod, “Just as long as it’s healthy …” I’ll always reply, “Healthy or not – I’ll take who I’m given. A boy or a girl, sick or well; I just can’t wait to have this new baby in my arms.”

Today, Haven, Gussie and Simeon thrive -- and tumble about like a litter of puppies. As I said earlier, Gussie made a complete recovery. Simeon, on the other hand, like most babies with a genetic syndrome, is a bit of a question mark. Only time will tell to what degree his condition will affect his life. One thing I do know, however, is that nothing has taught me to pray or open my heart to the richness of God’s grace like having sick children. Because of the trials they bring, I lean on the Lord and come through the ordeal stronger than when I began. For this reason, I have learned more and more to embrace the suffering, to embrace the trial, and best of all -- to embrace the baby: boy or girl – sick or well.




Haven James, age 4
Augustine Ambrose “Gussie”, age 2
Simeon Shepherd, age 4 months

Sarah lives in Pennsylvania with her family and can be emailed at scranton55@yahoo.com

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1 comment:

abigail said...

There's so much truth in this post.

Thank you. I passed it along to a friend, too.