I know I say this every time, but the woman I’m featuring today really is one of my all-time favorites. I met Kelly at Edel last year and was 1. blown away by her height and model-esque features (the internet has me convinced everyone is as short as I am) and 2. stunned by her mic-dropping rap at karaoke on Saturday night. Girl got flow.
Kelly and her husband Tony have 5 gorgeous kids whom they’re homeschooling within driving diastance of the Jersey Shore, and her two youngest both have Spinal Muscular Atrophy (SMA), a degenerative disease for which there is currently no cure. I don’t remember how long I was reading her blog This Ain’t the Lyceum before I figured that out, because she definitely isn’t a “medical needs” blogger, primarily. Fulton and Teddy’s stories are simply woven into their daily live, as are the stories of her other children. But this month is SMA awareness month, and Kelly has a powerful and unique perspective on navigating motherhood with medically fragile kids.
Living life as a devout Catholic, one who feels that everything the Church teaches applies to your everyday life, is hard. At best, we are misunderstood, our decisions considered backward or misguided. At worst, the world can be unaccepting and hostile towards those who choose to make sacrifices and hard decisions based on matters of faith….all in the name of tolerance of course.
After receiving two special needs diagnosis, my faith was struggling, but what I’ve learned since overcoming my initial sadness, anger, depression and hopelessness was that being a mother of two children with Spinal Muscular Atrophy and a faithful Catholic tests my beliefs in ways I never imagined and often leaves me feeling quite alone in the struggle of special needs parenthood.
First, on one hand, we’re so lucky that so much research is happening to cure or effectively treat SMA. Because we know what causes it, drugs and therapies can be accurately targeted to get to the root source.
The Muscular Dystrophy Association, Cure SMA and many other smaller organizations gives tons of money for research grants and drug trials, and there are some really positive things in the pipeline.
But, I don’t know what, if any, research is done using fetal stem cell lines. The Church fully supports the use of adult stem cell lines, but not those from aborted babies. There’s really no way to know without calling up and questioning each and every researcher. There’s no telling terminology I can look for in the medical write ups, and believe me, I’ve asked. All the main SMA charities state that while they understand that some parents objections to using fetal stem lines, they will fund all research.
I want to raise money and help research, but it’s very hard to give in good conscience to organizations who either are already or are willing to support unethical research. And it’s a hard opinion to hold when every month or so I get a magazine with a special memorial section filled with messages about children lost to SMA.
Every SMA parent wants a cure yesterday.
When you are faced with a disease that kills children, how can you say, don’t consider every means necessary to find a cure? But, I do. I don’t think unborn children should be killed and picked apart in the name of science.
What would I do if a cure was found by using fetal stem cell lines?
I don’t know honestly. I don’t think I could deny my boys a cure, but I think I’d be forever haunted by the children who died in the name of research. I would worry about my eternal soul.
We think because we kill our unwanted babies in a sterile white room and use their parts for science that we’re somehow more civilized than the Spartans, who simply left their unwanted newborns to the elements. It was Christians who first introduced the idea of rights for children but I feel that our society is being re-paganized with even other “good Christians” turning a blind eye in the name of science or worse, compassion.
The Catholic idea of suffering is so foreign to this day and age, it’s not surprising that most Catholics themselves don’t understand it. I find bearing my sufferings patiently and offering them up for special intentions is always a struggle, but it is the understanding of the value of suffering, and in what constitutes real suffering, that has played a huge roll in my acceptance of the cross of special needs parenting.
In today’s world, we must avoid and eliminate all suffering. And unfortunately, just having SMA is perceived as a form of suffering. Therefore, there is a prenatal test to determine if your child has SMA. It is not routinely given, though there are many working to make it part of the routine screen, and parents with one SMA child are, I feel, expected to test any subsequent children.
Of course, this means unborn children with SMA are aborted because they have the disease, and we don’t want to bring them into this world to suffer. Yes, they may be one of the sickest children, who unfortunately dies within the first few years. I don’t want to downplay the horror of that reality for anyone. But no screening can accurately predict the life of any child.
Several of the people I featured on Friday require invasive methods to stay alive; feeding tubes, ventilators, etc. But it is presented as a real option to not offer these things to your child, to simply offer palliative care if the parent feels it’s in the child’s best interest, and as to not prolong suffering.
Can you imagine approaching your newborn with a hospice mindset? I cannot fathom the pain the parents of the most seriously afflicted children must go through, and maybe in some cases palliative is really the only way to go, but should it be presented as an option to all parents from the get go?
I understand the very real pain some parents want to save their children from; pressure sores, scary infections, mucus plugs which prevent a person from breathing…but can’t we make a child comfortable and able to enjoy life to the fullest while still minimizing the health hazards? Is shortening a child’s life even further the only way?
We are a society that wants sex, but no babies. Think of all the wonderful children not being born because we only want perfect babies at the perfect time. SMA parents are told to speak with a genetic counselor before planning any more babies so you can learn your “options”.
One of Fulton’s doctors was quite angry to see I’d gotten pregnant without notifying their geneticist and was not planning to test for SMA until after the child was born.
Our contracepting culture cannot handle people who have unplanned babies, especially less than perfect babies. In fact, even many cafeteria Catholics wonder why my husband or I are not yet fixed. “You’re not still using the rhythm method, are you?!”
It is irresponsible in their eyes, and the consensus from some people after Teddy’s diagnosis was “Well, you got what you asked for.”
On the flip side, I hear other Catholics telling me to keep having more children, like they got word from God that I don’t have grave circumstances and I should keep rolling the die because “God doesn’t give you more than you can handle.” I can’t be expected to keep practicing NFP forever because that’s too hard on a marriage, just welcome the kids as they come!
People please. Don’t insult me and my situation with clichés or implications of my lack of faith.
The sin in the world’s eyes is having another child with SMA, but there are some in the Church who want to judge me for not having more. I can’t win.
As you can see, I’m often at odds with the very people, charities and support networks set up to help me. Sometimes, I can’t even see eye to eye with other Catholics. It’s the side to SMA parenthood I don’t talk about or share because, most of the time I can’t.
I don’t even know why I feel so compelled to share this post. Maybe so that if you’ve felt alone in your struggles to live your faith recently, you can know that you’re not.
I don’t look at my life and wish I wasn’t a Catholic so I wouldn’t be burdened with all these rules, I know that even when it’s hard, it’s right and my life is the better for it. You will have doubts and struggles but following the truth will never let you down in the long haul. Thanks for letting me vent.
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