Down syndrome


#1

Hi. I am wondering what the church has to say about people being born with genetic disorders? My son was born with Down syndrome. I am struggling to find meaning in it. God doesn’t make mistakes, does He? So, is my son being burdeneded with his disorder for a reason? Is it punishment of some sort or is it a gift of some sort?

He is 9 months old now and I have been searching for the meaning of this for 9 months now. I am so glad I found this website. Any thoughts or opinions will be greatly appreciated!

Thanks!


#2

You probably cannot see the ways he has already shaped your patience and virtue. He will affect so many people in life and change their perception of what the value of a person is. We are a vanity obsessed culture where other people are just a means to our own ends, to be used as we please and tossed aside. Let your love for your son, and the love he pours onto other people become a sliver of God’s love.

God’s purpose for him, like his purpose for all of us, unravels little by little each day.


#3

Congratulations on your son’s birth!

God doesn’t make mistakes. His ways are beyond our understanding, though, so we often find His actions confusing. I don’t know exactly what the Church says, but I will tell you that I know several people with Down’s Syndrome. One is my husband’s cousin, who is in her 30s. I don’t think she feels burdened – she enjoys her life. The couple that leads my Bible study group has a Down’s Syndrome child who is 3 1/2. They struggled a lot with exactly what you are dealing with. At some point, the husband asked God why He didn’t “fix” the child . . . God’s answer? She is exactly how He wants her to be. Now, I don’t think the couple finds everything simple now, but I do think they have been able to move on from this part of the struggle, which has allowed them to work harder on other things.

I hope that you have found some support groups for Down’s Syndrome families. I imagine that most famlies have dealt with these issues and may have helpful words for you. God bless you and your family.


#4

Hey Bgic…whilst it is not in any way the same thing, I understand some of what you feel.

My beautiful little girl was diagnosed with autism earlier this year. I guess I’m saying I understand some of the pain, the heartbreak, the questioning.

About the best thing I can offer is that God’s reasons are not our reasons…he doesn’t make mistakes, and who knows what he has planned for and through your special little one. Who knows the people he could inspire by his nature or abilities. Who is to say what he might achieve?

I also have an adult niece who has Down syndrome and because of the work her family put in, the love and the care, she is living life to her full potential and that is beautiful.

I am praying for you and your son. God bless.


#5

our-kids.org/Archives/Holland.html

This piece may give you some consolation. It is a disappointment, but there are still rewards.


#6

Yes - congratulations on the birth of your son! :slight_smile:

I am sorry you are struggling. I understand you carry a huge burden and I don’t even begin to fully understand the depth of your struggles.

However, be at peace and know that God is not the cause for pain, suffering, or even minor struggles in life. He created this world for perfection - when sin entered this world it brought along imperfections, pain, and suffering. We ALL sin, but no direct sin of yours caused this to happen to your son. Regardless of how it seems, no human being is perfect. We are ALL affected by sin in this world. Your son has been affected in his genes, others are affected in other ways. God uses these struggles to bring you closer to Him. Please do not look at your son’s life as a burden - see his beauty, his innocence, his love - he is here to lead others toward love. God will use this situation to bring others to love through your son.
God did not create imperfectly - Original Sin, and our own personal subsequent sins, have harmed God’s perfect creation. But God uses these situations for good. Embrace that good and see the beautiful gift He has given to you in your son.

Prayers for your beautiful family… :slight_smile:


#7

Welcome to the forums! I will keep you and your family in my prayers. It sounds like you have an ongoing struggle with this…remember that Jesus loves you so much and he wants to bring you the peace that you desire.

I have a little girl with Down syndrome. When she was born I was lost in a whirlwind of sadness and confusion, I can probably relate to some of what you are feeling.

No, the church does not have a declaration that “People with genetic disorders are gifts from God” However the church DOES teach that ALL life is precious and ALL of God’s children have dignity. This includes everyone from supermodels to the president of the United States to criminals to college professors to people with disAbilities.

God’s ways are not our ways. I did not think that I would be raising a child with a disAbility. I did not think that my other children would have a sibling with a disAbility. Yet my daughter is here and has brought beauty and grace with her that I could never have imagined.

My opinion: I beleive that people with disAbilities have special gifts to help bring the rest of us closer to God. Having a loved one with a disAbility gives families like yours and mine the opportunity to grow in grace and virtue that cannot easily be replicated. Your son will likely have a profound positive impact on your family, friends, neighbors and others. I know of people that felt called to a career working with people with disAbilities because they had a childhood friend with disAbilities.

You probably already know all of this though. Sometimes just because you “know” something doesn’t mean that you “feel” it. You can know that your son is a gift from God yet still feel apprehensive for his future. You can know that God loves you, yet still feel anxiety wondering what his plans for you are. This is okay. God loves us and he understands our imperfections and our anxieties and our disbeleif sometimes. Some days I just say “Jesus, I love you but please know I am upset and I am anxious and I don’t understand where you are taking my life. Please help me get through this.”

Hope this helps a little. Please give your sweet baby boy a kiss from us. God bless you.


#8

I “second” this! And here’s one for you, “bgic” :hug1:. Parents of special needs children are chosen by God for a special grace.

God bless you.

MV :curtsey:


#9

Thank you Monicad. Your post certainly captured the spirit of the “Holland” article. All children are treasures.


#10

I am a college graduate and an employeer.

We had people with various degrees of handicapps working in our dormitory cafeteria. My two favorites were Jenna and Pete. Jenna was terribly whiny but had this incredible, quirky sence of humor. She picked up on nuiances that many people missed. She also had a crush per semester, some athlete that she’d try to swoon, she’d do ANYTHING to get to him and watching the chaos that she caused was better than any sitcom. She was funny, driven and sweet.
Pete only talked sometimes but when he did it was always caring about other people. One time I walked in after a theatre show still in a “goth” type dress.
“Waddup? Was wong? Why you dress like that?”
“No reason, Pete.” (he never grasped the idea of a costume)
“You have problem?”
“No, I’m good?”
“Well, I’m here to talk, you need me, I’m here”
“Thanks, thats very sweet of you,”
“We friends. we chat it up. yeah.”

He did this whenever he thought a student was down or in trouble. He was constantly reaching out to the kids. Some would even sit there and tell him and smile at his reactions to their problems, “oooo boy, oooo boy, dat’s a big un” or bringing orange juice to the kids with colds. “You gotta drink your vi-min C. Then you got no more cold”

No one ever hated him, and he was such a loveable person. I think he truly and without reserve, loved everyone, even those who were stupid enough to tease him.

As an employer I hire. Right now I’m adding hours to job training programs where they work for me while I train them. They do this for free, but can use it on their resume’ or eventually be hired at my store. Sometimes they struggle, but they are among the most driven, sweet people I know. Their victories are the world’s victories. They work SO hard and rarley slack off. (I wish I could say it about the other kids I hire). They are also SO meticulous and knowledgeable. If I tell my other students to look for damages they’ll get about 75% of the merch that truly needs pulling. My special needs kids get 100%. Not only that, they often find other things that are wrong, saving me time, money and frustration. But its not about what they do, its about who they are.

I wouldn’t “fix” them for all the money in the world. They face a world that’s different, but I think that they also have happiness and love that we cannot begin to understand. Of course, I’m not their parent, but I do care very deeply about them.

On a side note…one of the things that the parents said was the best thing they ever did was giving themselves time to mourn the loss of their dreams for their child. It will help you cope with the struggles in the years to come.


#11

PurpleSunshine, thank you. Your post was the best thing I’ll read all week.

:slight_smile:

The beauty and innocence of these wonderful people puts us all to shame. They are here for us, because they call out to us to care for them and imitate God in His perpetual care for them.

Your dream for your child will change. A Downs child will not live out your dreams projected on him/her. At the end of the day, the Downs child will not be a reflection of you, but if you are lucky, you will be a reflection of that child, who by the nature of the so-called disability, will not be fully capable of mortal sin. You will live with a sinless innocent person who will remind you of God’s plan for us all. What you will not have is a child who screams at you that you ruined their life, skips class to hang with bad friends, buys clothes that are wholly inappropriate and wears them despite your instruction, argues that the faith you are trying to teach them is flawed, and a whole litany of other bad behavior that will drive other parents to the brink of madness.

Your child won’t stop loving you because you said no. You won’t go through weeks of surly pouting because you refused to spend thousands on a European vacation for a kid who isn’t even old enough to drive.

I could go on…

You have been handed a bundle of Truth, Goodness and Beauty. Treasure that bundle and guard the baby with your life. That child will lead YOU to heaven.


#12

Bgic,

Thank you for sharing and a heartfelt virtual handshake and congratulations on the birth of your beautiful boy, I too am a parent of a young boy , coming on 3 years now with that “little something extra” trisomy 21 that causes down syndrome. His Name is Noah
we knew in the third month in utero, and he came into the world on Sept 29 just as i had asked whispering to him shy of 3 months earlier through his mum’s tumz.

i beg patience qouting ur questions again its more just to help me stay on course. Im not a good writer and i can get a bit tangential at times as u can see.

U shared “I am struggling to find meaning in it. God doesn’t make mistakes, does He? So, is my son being burdeneded with his disorder for a reason? Is it punishment of some sort or is it a gift of some sort?”

I was there. and not to be didactic this really helped me so very much.

John Chapter 9:1-2
1 As he passed by, he saw a man blind from his birth. 2* And his disciples asked him, “Rabbi, who sinned, this man or his parents, that he was born blind?” 3* Jesus answered, "It was not that this man sinned, or his parents, but that the works of God might be made manifest in him.

its true…

I’ ll share this :last month a Daddy date ( moreso a really a good lesson for this old man to practice some multitasking skills), Noah and i went out to lunch to visit a dear old friend i went through RCIA with, 3 and a half yrs ago, (im still waiting to come into the church annulment going through). Any way my friends are very devout he a convert and his wife cradle catholic and even better Polish to boot …anyway, they have the picture of the Divine Mercy on their wall, there just off of their kitchen. Well my little man, has a delay with speech, and while he knows signs he has about 4 words and at the time of this visit then wasn’t talking very much. Well that said, heres then what went on : while i was distracted scanning for objects to keep safe, Noah left my side and walks up to the Divine Mercy there and points and starts uttering sounds pointing to it all again in his version of here. We were all stunned… then my friends laughed and said yes and while my heart broke in two our boy goes to over to another wall bearing a framed reproduction of the Sacred heart and does the very same thing looking up at the picture and back again to my friends all the while.

He Knows as he does with our boys and girls, and its all going to be ok.

Regarding what the church has to say about people being born with genetic disorders? I dont really know, my hunch is like Jesus , its beautiful and good and oh so true, And as evidenced by the life of Pope John Paul II , its been written by others that our Late Pope had a special fondness for our children. Mentioned so in Peggy Noonan’s short bio and there in the Miracles of John Paul II by Pawel Zuchniewicz . Their great books, even Noonan’s, and each brought me to my knees when chancing upon their passages that mentioned our ‘little ones’ and brought peace.

We are called, and yes we can drink the cup that has been given to us. We are great parents for we have great models the very best. Mary, and St Joseph are ours. Every day i make a point to go to them, they keep me and yes it really helps. They and the great cloud of witnesses St Paul speaks of: Saint Therese of Lisieux, her parents… and Padre Pio and St Joseph of Cupertino too have helped me in my weakness and i’ve learned to let go and lean on them. Padre Pio is great for that bonk on the head when pride steps in and im feeling sorry for myself, as I’ve read he wasn’t adverse to doing that and for that i luv him.

But the one who really has helped me understand the Mystery and is a closest to a church teaching aside from Jesus, is his mom. Mary, i think of her when i give my son a bath…which is every night as my wife cleans up dinner. I think of her thoughts overlooking the whispers of townsfolk that didnt beleive her or cast looks at her son, and if she caught there glance looked away… i think of when she bathed him and wonder what songs they might have sung together … perhaps this is all an echo of that pivotal scene in the most beautiful Movie of all The Passion. But great Art does that. It calms and makes us grow, Pardon this digression, But our Lady helps so much and do be assured i spend more time stumbling. So much so I often think of Mt Tabor and have learned to accept that touch on his terms and not mine … and listen; to rise and be not afraid, and learn to be like Mary and St Joe… fiat mihi…be it done to me, and just as there in the Fiat of our Lord with there in Gethsemene. We can do it , you and i we can do it for Them. Our children remind and teach us this. Every day.

Like u im learning and Monicad states it so wisely (ty Monicad!!!) and i thank you for your courage in reaching out and for this opportunity because it reinforces and reminds all again.

This post is a getting a tad long, talk about tangential, pardon me,

Aside from Luke, John and Ephesians the following is short list of books that i go to often …

Story of a Soul: The Autobiography of St. Therese of Lisieux, Third Edition (Paperback)by Therese de Lisieux (Author), John Clarke (Translator) .

had this in the hospital and it rocks…her Little way brings so much understanding to it all.

Man and Woman He Created Them: A Theology Of The Body by John Paul II (Author), Michael Waldstein (Translator)
anything by this great holy man…ive read this in pieces and it has taught me to look at my son and my wife in a whole new light.

and this for those days…when im futurizing and im trying to oversteer the situation …
He Leadeth Me (Paperback)
by Walter J. Ciszek

I am thinking of you and yours, and that beautiful boy and will so again in prayer and again thank you for ur courage in posting and starting this thread.

+under the mercy
Jacques


#13

Please accept my sympathy for your sadness. Sometimes these diagnosis are so scary.

I have an autistic child. Although the diagnosis was hard to hear and even today, we struggle with school, home, peers, etc… I have come to see that my child is a very unique and precious gift. There is no one else like her in the world and she is a treasure. At the age of 9, she probably knows as much about marine biology as many first year graduate students, yet is unable to walk home the the school bus stop alone. This does not mean that we do not face difficulties or that I do not lie awake at night pondering what the future holds for her. Her future scares me, but I need to remind myself that it is time to plug in the faith and say a little prayer.

To put it all into perspective: I have two other children. They could be considered normally developing and we do not anticipate any big scary labels for them. I do not think that they are guaranteed an easy life either. They too will face obstacles and I will teach them to face their challenges and their fears in the same way that I will teach my oldest. As much as I am an advocate for my oldest child, her best allies in life are her siblings. My hope is that they continue to grow their relationship over the years.

Sometimes we need to accept that our children, autistic, downs or otherwise will each have a unique journey and will measure success differently that anyone else.


#14

A Different Kind of Perfect is a story about parents choosing a child with Down syndrome and the implications of that choice. It’s a story about faith and blessings in an imperfect world that craves and idealizes perfection. It’s also a story about finding God’s perfection through love. Written with an honest voice, George Michael Lane draws the reader into his family’s personal story. The struggle with whether or not to terminate the pregnancy is honest and will hit a nerve with a contemporary audience.

This book was highlighted on the show on EWTN, The Abundant Life w/ Johnette Benkovic. I am not a parent of a down’s child yet but was transfixed by this beautiful witness. God Bless. It’s also available through her website here,

Love in Christ,

Maura


#15

To the OP: I just noticed your location. Check out Gigi’s Playhouse in Hoffman Estates. gigisplayhouse.com/


#16

Dear bgic,

I’m a nurse that works with sick babies and the Downs babies are my favorite! They are unbelievably precious. Given my work, I often think about the whys, and the “What was God thinking?!”. I’ve come to a few conclusions.

  1. Every baby is perfect, exactly the way God made him. They may not be “perfect” by our standards, they may have genetic conditions, birth defects, or illness that we label accordingly, but in God’s plan that baby is exactly what he was intended to be.

  2. Sick or otherwise compromised children are without a doubt almost always given to the most loving attentive parents. I think God in his wisdom knows that a mother battling drug addiction (or not battling at all) couldn’t possibly give such a baby the love they deserve. Many people find this frustrating ie. “she’s not a good mother and she has healthy babies”, “she did cocaine and why is her baby so healthy?”. It is because God knows the baby needs better.

  3. The reason babies are born with genetic conditions/ sick/ etc. is because they inspire us to love more like Jesus loved. They are utterly defenseless, they may not do the things we would like them to do, or expected them too… no one understands that better than God. They are a perfect example of all of our human weaknesses exposed. To love such a person is truly to love without counting the cost. We may love many people in our lives but people that need our love and care in such unique ways as mentally and physically challenged people do, demand an entirely different level of love, service, and protection.

  4. God loves us, so he allows us suffering. Sometimes it is difficult to wonder why he allows babies to be born with various illnesses and conditions when they are so innocent. But such sufferings when properly offered render so much good in the world.

  5. Loving your baby may be just the thing other women need to see. There are many women pressured to abort babies because something peculiar showed up on u/s or from an amnio. A mother overflowing with love and happiness for her baby who was not born “perfect” by human standards could make those women courageous enough to give their babies life and not be afraid of the many unknowns.

May God bless you and your sweet baby!


#17

My son has downs syndrome too. He’s almost 4 now.

I haven’t read this thread yet, but I thought I’d let you know. :slight_smile:

I was very devoutly Catholic when he was born, so if you need to ask anything, I promise that I’ll be respectful.

PM


#18

When you become a parent, you cease to have total control over your life. You do not know what the health or personality of the child will be. Even if you have a perfectly healthy child, you don’t know what will happen next week.

I sense you are mourning for who you child is not. That is pointless, and I do not mean that in a harsh way. I mean that in kindness. You cannot mourn for a child who has never existed. What you are doing is tantamount to loving the child you imagioned you would have more than the one you were given. Again, that sounds harsh, but I do not intend it to be so. I also speak as the parent of a child with Down’s syndrome, so I understand your position.

This is not an issue limited to parents of children born with special needs. Some men want sons who will rule the sports field and their sons disappoint them by failing to succeed. Some parents believe they can plan the destiny of their child and are angry and disappointed when that individual makes choices that the parent does not agree with.

Every parent has dreams and aspirations for their children; the challenge is allowing ourselves to mold our children while still giving them the freedom to be the individual they were created to be.

You did not get the baby you believed you would get; your child has challenges and obstacles that other children will not have to face. These things make you sad, and it’s understandable. There is still a child here who needs unconditional love and acceptance, however. You do not have the luxury of wallowing - although that’s not what I’m saying you are doing, just pointing out you can’t allow yourself to become this way - in grief.

When a child is born with special needs, the extra burden that falls upon the parent can seem unbearable. The simple fact is: your child will only succeed in being all that he can be if you are there to be his champion. You have to fight for him; whether that’s for special services, therapy, medical assistance or educational opportunity - he gets only as much as you are willing to fight for. If you don’t, who will?

Invoke your inner mother-lion and wrap your child in your defensive grip. Fight for him; demand he get everything he needs to be the highest achiever that he can be. Do not allow your disappointment and sorrow to stop you from doing what he needs to have done.

The child in your head never was; the child in your arms always was meant to be.


#19

That’s not always true.

When we were pregnant with our gorgeous boy, we didn’t know about it. He is our firstborn. Naturally one projects thoughts and images and try to imagine what the future will be like. After 7 months of daydreaming and looking forward to something, when we got the news, there was a certain level of focal shift that needed to take place.
Now, as Catholics, that focus shift is very quickly forced onto you by the church and the priests and fellow parishioners…

”Oh you are so lucky to be chosen for this special child.”
“God has a plan and chose you.”
From all sides we got these messages and we were very quickly thinking like them.

But…since that happened very quickly after our boy’s birth, we suppressed these feelings we had…the dreams we dreamt, the plans we made. We needed time to adjust, but weren’t allowed it. We were kinda forced, by peer pressure to smile and agree that we are so blessed and are very happy for this gift.
We needed that time.
The time needed can be different for every parent, but I can tell you that those feelings came bubbling up a few years later and it wasn’t pretty.


#20

Purplesunshine, I can see you have deep affection for these people that work for you. It is also obvious that you are a kind person that took time to share your story in order to help the OP. Thank you for doing that.

I want to let you know that reading your story, and hearing others like yours are sometimes especially painful for me as a parent of a young girl with Down syndrome. I guess that you might be surprised by this. I want to share my thoughts with you simply as one Christian sharing perspective with another. I certainly cannot speak for all parents of children with disAbilities, but many people I know have shared this same pain, it is hard to explain but I would like to try.

When people describe people with disabilities as “innocent” and mention that they use “baby-talk” it pains me terribly, even when I know it is not meant to hurt and they probably think they are helping me. It is a reminder to me that my daughter is developmentally delayed and many people will always see her as somewhat of a child and somehow “separate” from the rest of us. It was also painful to hear about the woman with disAbilities who had a crush on someone every semester. It reminded me that my daughter may have the same experiences, that is she may have crushes that others see as “cute”, but that may be all. The rate for marriage for people like my daughter are really quite low and I fear for her lonliness even though I know I need to trust in Jesus Christ.

Please know I am only sharing my thoughts for contemplation and in no way am I doubting your sincere admiration for the people that work for you. This even happened with my own family too. When my daughter was born my well-meaning mother-in-law told me not to worry that people with Down syndrome could do a lot these days and my daughter could probably even get a job making pizzas one day. She really was trying to help me, really, but her words crushed me. People were often surprised that their words had the opposite affect. With God’s grace I have learned to try and see beyond this and (as when I read your post) try and appreciate the person for the message of kindness they are trying to convey.

I guess after this time with my child I see her as more alike other people then she is different. She is a lot like her siblings and a part of the family. Down syndrome is not even a daily thought around here most days. Perhaps it is for this reason that when people define her as “sweet” or “angelic” or tell cute stories about people with disAbilities it unsettles me a bit because (I feel) it sets them apart from the rest of us and I don’t think it is good for them to be set apart. Most people bear no ill will towards people with disAbilities…but to many people they somehow seem separate, they care about them but somehow they seem like they are “not really one of us.”

My daughter is beautiful, she is also irritating and gets on my nerves. She can be cute as can be and then drive me nuts. She is sweet and also manipulative and has a heck of a temper. In short, she is exactly like my typical children in most ways. People with disAbilities are more alike the rest of us then they are different. This is a message given to new parents of babies with Down syndrome where I live. I think it is the fear of having a child that is different is a big fear. Perhaps that is why highlighting the differences whether they be positive, negative, cute or funny are sometimes bittersweet for a parent like me. Hope that makes some sense.

Thank you for taking the time to read this if you got this far (pretty long sorry!). God bless you and take care.


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