My Moral Dilemma As A Catholic SMA Mom
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.
The ultimate judge is only the Lord, so why do we as humans judge others? It only makes life more difficult. I think you are a remarkable woman. I will be praying for you and your family.
Was just what I needed to hear today. Thank you for opening up, Kelly. We Catholic moms have to stick together. Fulton and Teddy are blessed to have you as Mom.
Someone once asked me, if there was a cure for deafness, would I take it? And I said no. She asked me this because I wanted to know why she wanted a cure for autism. Everyone has something to offer, even when it seems like they have nothing or that they would be a burden. What’s the point of life if you’re not constantly being tested, if you’re not learning about who you are in both the easiest and the most difficult of times?
Deafnes does not kill you. Maybe you should do a little research on SMA before you say something so offensive to those suffering from this terrible neurological disease.
I was more responding to the idea that the writer proposed about our society not being able to handle “less than perfect” babies. There are a great many people out there who abort their babies when they discover that they are “less than perfect,” whatever the imperfection is, and I’m sorry if it wasn’t clear, but I was agreeing with the writer.
60% of children born with SMA have type 1, being the most severe. Most of babies diagnosed with this onset will not live past infancy. They will eventually be put on oxygen tanks, lose the ability to swallow and their muscles will slowly deteriorate until they can now longer breath. Does this sound like a less than ‘perfect’ baby to you?
No family should ever be judged for making the tough decision to abort fetuses who have this severe and life threatening diagnosis. If you are aware that this genetic disease runs in your family – it is the responsible, ethical and humane thing to seek genetic counseling before having children. This is NOT your life to gamble with. If you feel it is your spiritual calling to raise children with disabilities then you should reach out to your local charity organization or seek adoption.
I was diagnosed with SMA type 2 which was later changed to type 3. My onset was less severe and I have lived a relatively ‘normal’ life. But this has not been without severe mental and physical impact on each and every thing I do. I have also seen the impact on that this has had on my family. This disease does define me because it is the core of who I am. However, it does give anyone the right to say that I was put on this earth to struggle as an example for why one should have faith.
Your life is certainly worth living, and no one should ever presume to have the audacity to tell you otherwise. And that goes for every human person on this planet, no matter their age, socioeconomic status, gender, race, etc. Even fetuses. Even infants. Even elderly persons. No exceptions – all life is valuable and all lives are precious. Thank you for your words.
Thank you Kelly! May our Lady hold you up on the hard days and help you open your heart to our Lords loving grace. I’m sure you are a wonderful mother and example to those around you! I once had a woman ask me, “is suffering such a bad thing?” After thinking it over and praying about it, I’d have to say no! Suffering teaches us so much! And with it our relationship with God can grow. God bless your boys for their daily suffering has taught so many. God bless your other children for I’m certain that they know unconditional love and have a special spot in their hearts for all people with special needs. God bless you and your husband for living God’s will and for continuing to keep Him in the center of your marriage. Thank you again for sharing! You have helped me remember why I live this beautiful vocation, as a mother of five, on a hard day.
Kelly, you rock. Victor Frankl and you hatched it: suffering is meaningful! Also, fist bump for dealing with the critiques from all ends. I’m sorry you have to deal with all that! Someone, somewhere is always going to be offended no matter what you do. Oh poo for them! In the end it is between all of us and God…it was never between you and them anyway 🙂
Blessed are they who forgo discernment for they will never be given more than they can handle. Isn’t that in the Bible somewhere?
In my Digeorge circles, which are decidedly different in many ways from yours Kelly, we have a lot of people who argue for and advocate prenatal testing to “eradicate 22q,” and it breaks my heart.
“Think of all the wonderful children not being born because we only want perfect babies at the perfect time.” <– This was my favorite part, and I read this while my almost 7 year old who is missing hundreds of genes she's supposed to have is painting a watercolor picture of a sunshine. Life's not perfect, no. But when will it ever be? That's so not the point of this experience.
I loved your "5 Ways being a Special Needs Mom Made me a Better Person" so much. It's so spot on in everything I've encountered. Sharing this. <3 Thanks for the honesty. It resonates more to me than any post on "not being supermom" if that makes any sense. Actually I'd love to hear your take on supermom.
May angels continue to lead you and your family Kelly because you follow the Truth who is the Christ and not the truth which can be whatever someone chooses <3
Living as a devout Catholic is difficult in these times, and it’s wonderful to find a writer who understands it, writes honestly about the issues, and thinks so much like I do! Keep going, lady! You are needed….
Thank you for writing this. This post resonates so strongly with my family’s experience that I felt I was reading my wife’s blog rather than that of a stranger. We are not alone, you are not alone. My world is a better place today because of your words. Thank you
ditto what Jason said!!! I thank God for you and your beautiful expression and love for God in the Catholic Faith and your family.
I do not live with your situation. I am however struggling with the decision to convert to Catholicism after 40+ years as a protestant. A few years after my conversion I am struggling with the question of whether I did the right thing- I’ve been told off by a priest in confession (I told him the truth about something that had happened and he didn’t like it), I have been told to “not be so dogmatic” and that I should “just relax” when I sought advice from this priest about the pressure I was under to go against one of the Ten Commandments (I won’t, but cannot believe the issues it is causing). Thankyou so much for sharing your post. I think Pope Francis’comments about intolerance and indifference are spot on. We catholics need to be a lot more supportive and loving of each other. Not jumping to conclusions and criticising others for their decisions (especially when we do not live in their shoes). I am reminded of Jesus asking to have dinner at the short little man’s house (I can’t recall the name – Nicodemus?), and of Him telling the disciples to let the little children come unto Him. Disciples will always make mistakes – we are all human. But both sides are called to forgive, and above all, love each other. I hope your post brings you a lot of love. You are a wonderful mum. In the end, whatever you do is between you and God – and no-one else has a right to judge you. If your conscience is clean, you are doing good. I commend you for holding firm in your faith. God bless you.
Tracey, I hope you don’t mind my responding to your post — I’m a new follower of this blog. With regard to the priest you have been talking to and confessing to — you know, there isn’t anything wrong with finding another priest for that. I had the same experience — we forget sometimes that priests, although to always be respected for their divine office, aren’t always particularly nice, or even very good with people one on one. We see that more now because of the shortage of priests. I worked in a tribunal for a long time, and some of the priests with that vocation simply weren’t the type who flourished as parish priests. They weren’t bad at all, just people who belonged in a certain niche. Anyway, you wouldn’t have to leave your parish or anything. Just quietly visit another church or two and take confession. You will find someone who can be more of a spiritual mentor to you. I did. Hope this helps, and also welcome to the Church. With all of its imperfections in hierarchy and community, it’s the only place where Jesus in the Sacraments is the real focus and the only part that never lets you down.
Thank you for sharing. You are extremely brave. You and your family are in my prayers.
you are one brave and courageous person. God bless you and your family.
This is such a beautiful & inspiring post. Thank you!
I am the Mother of a child with SMA and a Catholic so I understand the conflict the struggle to walk the line between our Church and our need for a cure. What I believe is that every life has a purpose every life, that God does not create evil but he can find good out of evil. Those babies lost to abortion can have a purpose those lives have found a purpose a great one to cure people. I believe in a CURE a true CURE because the BIBLE tells me so. If we were not meant to find CURES for diseases Jesus would not have made the blind see, the lame walk, or raise the man from the dead. He would have sat with them and told them their life has purpose, told their families they could be part of society. He did not he CURE, he HEALED he showed us what was possible. For me I can not believe on one hand God is all powerful then stop short at my belief of his power to give us the tools to CURE. God is all good the source and supply for all that is good in the world. He has found purpose for the lives that evil has taken.
Dena, I’m struggling to understand what you’re saying. Are you saying that we can justify using the body parts of aborted babies for medical research as long as it results in medical cures? If so, I agree that God can bring good out of evil, but to draw an analogy, let’s talk about children conceived by rape. Children born out of rape are precious and has no less dignity than a child born out of love, and have no less value or worth. But do we encourage rape, allow rape because of this? No, because there are times that ends cannot justify the means. The evil that transpires during the means must be avoided. The Bible does not give examples where moral/natural law was transgressed against for the greater good.
I understand the desire for a cure – I have a child afflicted by serious epilepsy and profound Autism, and for a time in her infancy we weren’t sure she’d survive. Even now, I know she will likely not have a long life and will likely predecease me. But I have come to accept that she is exactly who she needs to be. Is it fun or fair? No, it doesn’t feel like that. But I also accept that God doesn’t make mistakes, and she is who she is.
We have become so obsessed with “curing” things in our society, and rightly some things should be cured if we have the ability to. But we are frail, failible creatures and at no time should those cures come at the expense of those around us.
Kelly (& Jenny!) – thanks for this post. What a beautiful reminder that the Truth is always worth following. Thanks for living the truth that every life is a gift, that suffering is not pointless, and that love and joy can be found in the midst of struggle. You have encouraged me in my own struggles. Thank you!
PS. I just LOVED this: “You will have doubts and struggles but following the truth will never let you down in the long haul. ” Amen, sister.
Before coming across Kelly’s blog, my only experience with SMA involved families who wholeheartedly advocated for any and all research AND genetic testing to “prevent” more children from being born with the condition. It is SO refreshing to learn not all SMA families feel this way and there are people out there who do believe in the true sanctity of life.