My Moral Dilemma As A Catholic SMA Mom
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 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 terminology I can look for in the medical write ups, believe me, I’ve asked. All the main SMA charities state that while they understand 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 are 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 don’t understand it. I find bearing my sufferings patiently and offering them up for special intentions is always a struggle, but the understanding of the value of suffering, and in what constitutes real suffering has played a huge roll in my acceptance of the cross of special needs parenting.
But today, 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.
God won’t give you more than you can handle…that’s one of those pieces of advice i wish i could go back and tell myself to IGNORE. It’s different if you feel a real call, but i (and i don’t think i am the only one) lived it to mean that being miserable and overwhelmed was just all my fault for not being good enough, having strong enough faith.
Thank you for your honest discussion of this. When my second child was born she was seriously ill and might have needed a liver transplant. Knowing that i would have had to let her die is horrifying. Maybe that’s the real meaning of God won’t give you anything you can’t handle –don’t waste time worrying about what might have or could happen…
Just to clarify, the Church doesn’t forbid organ transplants but the method used in liver and heart transplants –the donor is not fully dead only “brain dead”
I don’t want to fall down the rabbit hole here, but the Church permits organ donation of all types. It’s in the CCC. I’m a double lung transplant recipient and a practicing Catholic. My donor died of a brain aneurysm. Benedict XVI is/was an organ donor. Also, liver donations can be performed using only part of a liver, since the liver regenerates, and thus can be done from a living donor.
Thanks for the correction about liver transplants, i didn’t know that. The distinction about taking organs from someone who is only “braindead” still applies to the way some organ donations are done. There is a good article about it on catholicculture.org but i don’t know how to link it. But I don’t want to go down the rabbit hole either, so I won’t post any more on this. 🙂
I have wondered what you thought about these very things, but I certainly didn’t want to ask. No arguments from me on anything you have said, just prayers for you and your family. {{{{Kelly}}}}
I’ve laughed until I’ve cried at some of your posts, but this one is my favorite. It’s so good to get a glimpse at what it is like to live our faith with circumstances I haven’t experienced. On a practical side, it’s also good to know what helps and what stings when talking to parents who have similar circumstances. On a side note, I teach sociology at the community college level. One of the topics we discuss is differing birth rates around the world. I’ve written down a couple lines from your post and will quote you. “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.” You summed up our culture’s relationship to childbearing perfectly. I expect it to be an excellent prompt to an eye opening discussion. Thank you.
It’s horrifying to me that faithful Catholics criticize each other in this way! As a culture of life, we need to learn to support and pray for each other more. I really appreciate the honesty of your post, it’s a good reminder of the serious struggles our society has created by abortion and fetal medical testing. Thank you for writing this.
This is such a great post. Thank you for your refreshing honesty. You’re such an inspiration. I’m sorry if that’s a cliche you hate to hear too but I have just loved your recent SMA posts.
If I can be honest, I’m in the beginning of starting our family. I have one, going on two, kids. We didn’t get genetic testing but it’s something I worry about ALL the time. I always hope that “surely God knows I can’t handle that.”
I mean Im the special kind of stupid that worries over stupid superficial flaws too– surely God knows that a serious diagnosis would incapacitate me in despair right? My husband is more of the strong solid one. Accepting of anything that comes our way, not wishing for it of course, but not fearing it. His strength almost worries me. I worry that God will see that as “there’s someone that can handle it! I’ll send the special needs kid to them!” Haha. It’s really weird how fear makes my mind work. Like my fear and open admittance to God that I “can’t handle it” will keep my kids “healthy”.
Ugh.
So that’s what’s wrong with the cliche “God doesn’t give you any more than you can handle”. Because you’ve shown me that HE DOES. ALL THE TIME! Twice sometimes! But that even the people who can’t handle it will survive, and that those people are flawed humans just like me. I just love how you show the very human side of the special needs parent. And for some reason for the first time in my life I’m not QUITE as afraid as I’ve always been.
I think because when all I see/hear are examples of saint-like parents who received the child with joyful acceptance and who never are angry at God for it, and you never hear about the other side, the part before the acceptance. I’m just like “oh no.. That’s not me.. They’re freakin saints! I’d be a mess.”
Ok I’m gonna stop because I’m
Obviously not a writer and I’m all rambley with my thoughts going everywhere. But That’s what this subject does to me.
Thank you. That’s all I meant to say. Thank you for your witness and your honesty.
You are not the only one to think that way. And I too am grateful to you Kelly for sharing honestly about the joys and difficulties of life as a special need parent.
Thank you for sharing your heart. This is a great post! I think you hit the nail on the head with so many of your insights about our culture and the meaning of suffering.
It is a fine line and one I gave wondered about as well. If a cure comes, is it wrong to accept it or wrong to ignore it? My mother had brain cancer for six and a half years and it was a long struggle that really tested my faith. In the end it made me stronger and strengthened the whole family, but there was always that question of what the right thing to do is. I feel that the ironic flip side of our culture of death is that we push to use extreme methods sometimes to lengthen days even if it doesn’t serve the patient well. I think we need to provide good and comforting care for as long as we can and let a person live their lives to the fullest. My problem is instances like when my mom was weeks from dying and I had to fight to not have her providers make her go through a dental cleaning and round of “routine” vaccinations. Or when she was in dire pain but they didn’t want us giving her morphine until the office opened in four days because an overdose could cause premature death. She was dying, it was time to make her comfortable and let her go. I find even Catholics believe dying is the worse thing that can happen, but don’t they believe in everlasting life and the Resurrection?
As far as NOT and fertility, we really need to work as a Church to accept that not every Catholic is called to have 14 children. There really are reasons that people can’t or shouldn’t just get pregnant whenever possible. We are too judgemental and it is hurting our cause to promote a culture of life. God has plans for every person’s life and no plans are more worthy than others. You are doing the best you can for your family. God doesn’t give you more than you can handle, but He also gave you prayer, a brain, and a conscience to discern His Will. We are not expected to just wander about never making a decision because we have to “let go and let God.” We have free will and as long as that will is aligned with Church teaching, aimed toward serving Christ, and in prayer to discern it’s direction, we are letting God’s Will be done. NFP is effective but it leaves a little door open fir God and He can choose to change your plans at any moment, but it is accepting that little possibly that makes it pro life, not contraception.
I dint know if any of that tangent makes sense, but I hope you kind of understand what I am saying.
Oh, Kelly! Well, I think you’re wonderful, and doing a fabulous job as a Catholic and mother. So there’s that…
Kelly, what faith that allows you to wish beyond all hope for a cure but not let yourself do anything morally questionable to fund it. You are a strong, wonderful example of a Catholic mom!!!!
Kelly, I totally feel you. I’m not a parent, obviously, but I have the same dilemmas. Do I give money to the cystic fibrosis foundation to fund a cure–but how do I make sure that it’s ethical? What about treatments? So many of them were developed before I was born, and in the 80s and 90s, we didn’t have this sort of instant information culture we have know. So….what does that mean? I’m going to assume that God knows (because He does) that I and my parents did our best with the information that was presented to us at the time. And since I was a late CF diagnosis (I was 11–in the 80s they didn’t do the at birth testing that so many states do now), my parents had two babies after me–my siblings. And I’m sure some people quietly thought they were crazy, without knowing anything about us.
I have very negative feelings about the phrase “God doesn’t give you more than you can handle.” I think people use it in a well meaning way and we should absolutely trust in God and His ability and graces to provide through any situation but we live in a fallen and imperfect world. God doesn’t “give” us cancer. He didn’t “give” your children SMA. He allowed it and i think that is much more than a semantical difference (is semantical a word?!?!)
He allows “bad” things because He can bring beauty and good from all but He doesn’t make them happen or dole them at as really yucky gifts. Sometimes we through bad decisions or no fault of our own really do have more than we alone can handle and that’s when we need God the most!
Mother Teresa said something funny about this: “I know God won’t give me more than I can handle. I just wish he didn’t trust me so much.”
Sweet Kelly, you are a remarkable mother and Catholic. I struggle with being a single mother, but you always inspire me to keep going. God bless you and yours. Y’all are in my prayers daily.
<3 Thank you for sharing this.
Thank You for this. It helps my understanding to see what real struggles people face. I value it and thank you.
A little OT, we use vaccines once derived from fetal cells, right? Isn’t there a distance factor (for a cure, not for research I mean)? This is an area I don’t quite understand.
This is such a good post.
My Mom has MS, and I’ve struggled with all the same thoughts you have shared. Thank you for acknowledging a very real struggle.
From a Catholic mom of kids with cystic fibrosis, I raise my morning mug of coffee to you (it is 8am in Alaska) — love from afar!
This is such a powerful post, and you are an amazing woman, Kelly. Thank you so much for sharing with us!
THIS.
The other thing that bugs me about having a kiddo with special needs (in my case, autism and developmental delays) is people telling me about their neighbor’s sister’s best friend’s college roommate’s kid who has autism and is doing [insert insanely talented thing] or who took their kid off of gluten, casein, dyes, and just about every food that tastes good and it “cured: them.
I seriously need to order a box of “stop talking” cards because I find myself getting stabbier by the year.
I am the SAME WAY. It’s like, well great for her. Go away now.
Right?!?!?!?!?!?
Oh, yes. My father-in-law’s wife is one of these types. Every time they visit she has a new “so-and-so at our church blah blah blah”. It’s a running joke between my husband and I about how many people this church of theirs must hold (a joke we must Every. Time. so my husband doesn’t punch her in the face, LOL!) Although she may have gotten hers when the kids went to stay with them for a week and she was so sure HER methods would work to fully potty train my son once and for all. Like the efforts of his mother and developmental preschool teacher for the past THREE YEARS were only a half-hearted attempt on our part. Still laughing about that one!
Thank you for sharing this Kelly. It is always inspiring to read your thoughts about life as a special needs mother. Your posts radiate so much joy, even when speaking of the obvious trials. I am sorry there are those who would make it more of a burden. I imagine I’ve been such a person before to others. It is always good to be reminded of these things.
Thank you for sharing Kelly. Prayers!!!
Thank you for sharing your thoughts on this beautiful post. This line, “You will have doubts and struggles but following the truth will never let you down in the long haul.” was so beautifully written.
I’m borrowing this quote (above) for my talk to RCIA tonight. It sums up our faith perfectly!
Such a great post Kelly! It makes me crazy when people think that struggling to care for a child with medical or other special needs translate to regretting the existence of that child. I
This is one of my favorite videos about parenting children with special needs – It is about Down Syndrome, but it is also about every child and every parent.
https://www.youtube.com/watch?v=Ju-q4OnBtNU
Beautiful article, Kelly. Thoughtful, contemplative and faithful, yet still radiating joy–in other words, a true Christian witness. Just know that we love you all and are praying for you.
You have my prayers and sympathy, but most of all admiration for being true to what you believe in spite of all the naysayers.
Oh, mama. God love you for sharing your heart. What a beautiful faith!
I am a father of a disabled son who is 20 years old now and is in special care home. I feel your exhaustion and frustration coming out in your struggle to discern your position as a good Catholic. It is frustrating to battle everyone else and the medical community given all our societal rejection for all things that require self sacrifice. First I would say that a good effort needs to be made for you to look after your own health and to be careful of caregiver burnout and exhaustion. It is detrimental to your health and can damage your health, in some ways permanently. We can’t be super parent 100% of the time and when it includes caring for very disabled children like yours and like my son, its important to remember, they need you healthy. So a good plan of respite for yourself and your husband it important. The other side of your frustration is your need to be on the side of Church teaching in all things which is admirable, but we can get lost in the weeds of that battle with non-believers and the enemy uses that to get you discouraged and frustrated. The first the commandment is vital, to Love the Lord your God with all your heart and with all your soul and with all your strength. You do that by your care and love for your children, but the Lord also wants you to be healthy. So, it can be a difficult balance for Catholics. I struggled with it also. Respite with help from relatives and or services in your community helped us. Its important to remember that your children need 24 hour care and in the world that represents 3 shifts of caregivers/nurses/care practitioners for 24 hours. You and your husband are doing these 3 shifts and doing it 7 days a week. That is very hard on your physical health and also the families financial health and the relations with other children. Prayer is the place for strength through it so, its important to go to the well daily. May God bless you abundantly in your care for your disabled children and family.
Thank you so much for sharing this. For being so honest about what it’s like. My little sister is just starting to navigate the special needs arena after my nephew was born blind. The doctor told her she should only do in vitro because she wouldn’t want anymore with the disorder – said in front of the beautiful little boy with the disorder that she loves so much.
This also speaks to me in infertility. I’m a medical sound candidate for ivf, so I have the voices that say, if you want one go get one….and then there are te Catholics who just keep telling me that it’ll happen because they’re praying. Well, thank you for your prayers, but that’s not how it works.
Such a good heartfelt post.
Wow. What an awesome post, Kelly. Thank you for sharing with candor, vulnerability, gentleness, and love.
Thank you for sharing something that I, too, have struggled with. I have two on the Austism Spectrum, and my youngest has Down Syndrome. Though my children’s diagnosis are not life threatening, everyday is still a struggle. I have received similar comments from people about having more children, and God only gives us what we can handle, and I must be some amazing person to get three with special needs. Not true…it is only because of HIM that I am able to go on. You said things perfectly, and all I could do was nod in agreement. Thank you for putting out there what I didn’t have the words for.
Thank you so much for writing this, Kelly. It’s such a gift that you’re able to give us a window into the realities of living a faithful life in truly, truly grave circumstances.
As a mom of two kids with (wildly different) special needs, this post resonated strongly with me. I feel like we are a family of square pegs surrounded on all sides by round holes.
Thank you for this. I’m not Catholic and I kind of envy the Catholics I see through blogs like yours — your tradition and community seem to me so much richer and deeper than what the evangelical/protestant world offers — my family doesn’t fit in there; and to be reminded that any community here on earth is just a group of sinners helps me to be less discontented with what I have. I’m very grateful for your blog b/c I really do think that we could be BFF 🙂
I think that people who say “God doesn’t give you more than you can handle” and other trite comments feel anxious that they cannot “fix” your situation and so saying something stupid (which they mean as helpful) makes them feel better. While you, of course, feel worse. That, at least, is how it struck me when I was in a very dark, hard place. And a few people actually did show the love of Jesus to me, so that’s what counts. (Though I still would like to give the rest a good bop on the nose.)
How I loathe “God doesn’t give you more than you can handle”! So if you can’t handle it, you’re a loser, right? *That* must make people feel better. Prosperity gospel for the LOSE!
Punching people is sort of in the tradition of the Catholic Church, though you need to be sure that it is warranted. St. Nicholas apparently did it right. Yes, *that* St. Nicholas. The story is all over the place, but it is well told here: http://taylormarshall.com/2011/12/saint-nicholas-allegedly-punched-this.html (Okay, I’ll stop now.)
What an excellent post! I have two children with health issues (cyclic vomiting syndrome, which may or may not by a mitochondrial disorder, and neonatal gallstones), but nothing like SMA. I’ll pray for you and your kids.
Thank you for sharing your very personal struggles. I am inspired by your example.
Thank you are your total honesty and for being so vulnerable. I am praying for Our Lord to give you and your husband the wisdom you need to navigate your beautiful life with your beautiful children.