Your fears of having a disabled child?

Yvonne - posted on 11/10/2009 ( 52 moms have responded )

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What are you major fears and/or concerns of having a child with Down syndrome, Autism, Cerebral Palsy, and so on?

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Sherrie - posted on 11/11/2009

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I had a son born with spina bifida. I never had an amniocentis, nor were untra sounds done at that time. He was born, flown to the children's hospital, where he underwent surgury. To this day he is absolutely normal. If I had known he had this, I still wouldn't have gotten an abortion. He is my only son, the other 4 are daughters.
I also have a set of twins. Both where fine when they were taken by c-section. One, bless her heart, got a staph infection. From there it went to blood clot in the brain, to hydrocephilus, to a reservoir put in to drain the fluid. She ended up with with her cerabellum totally damaged. She has ataxic CP. She cannot talk. She is 6 years old now.
Who is to say when a problem with your child will happen. Whether in the womb or out. How many mom's have had to deal with older children who get in car wrecks, sports accidents, or whatever other accident that leaves them paralized, brain damaged, or whatever else.
My fear is also who will take care of her when I am gone, but she has 4 other siblings who love her. There are people who will love your child. My dad has had a child with Downs syndrome for 28 years. He is not my dad's biological child. He took him to care for him when he was a few weeks old and has had him a part of his life for 28 years. Now he has become a part of my families life also.
These children and grownups touch ours and other peoples lives like no one else can. They are the way they are for a reason beyond what we can understand. Accidents happen for reasons we do not understand either, but it is all for a reason.

Mary - posted on 11/11/2009

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I had a son with cerebral palsy and a host of other health issues. My greatest fear for him was that people would not see him for the person that he was nor would they invest the time needed to help him reach his fullest potential. He was not my natural born son, we came into each others lives when he was six. He was a wonderful and unexpected gift to our family. So to you Mom's out there worried about who would care for them when you are gone...there are people like me who would find it an honor to treasure your special someone and help them to have a happy life.

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Trina - posted on 11/18/2009

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My 4 year old grandaughter is MR, before she was born I took a position in an intermediate care facility for MR. It was a calling of love even before my sweet baby girl came along. There are people out there that will love and care for your loved one when you no longer can. Our country has came a long way in the treatment of the disabled. Facilities are not what they used to be and the people that work in them sure don't do it for the pay. It's a passion.

Mary - posted on 11/18/2009

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Thank you Maree for your kind words. I was really the lucky one. My son Corey was such a treasure to me and I was so blessed to be his mom. He made me a better mother and taught me what truly was important in life. I miss that sweet life so much and I look forward to the day that our family will be whole again in our Father's house. I now pour all my love for him into his sisters and also the friends he left behind at St. Mary's Home for Disabled Children. His friends keep me close to him in spirit. I feel that these young lives never have to worry about who will look after them, they are angels and God always looks after his own :)

Louise - posted on 11/16/2009

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We have 12 grandchildren 11 grandsons and 1 granddaughter who has down syndrome. What a delightful child she is. She is our Princess!!!! I cant imagine a world without this beautiful child. She is the most loving and kind little girl you could ever imagine.

Carole - posted on 11/16/2009

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The highlight of my work day is the hug I get from one of the ladies that works there. She has Down's syndrome, yetis able to work independently, lives in a group home, reads the paper, and is just truly a delight to work with. She goes to more events, and takes more trips than I do! Truly an outstanding person that I am so fortunate to know.

Joelle - posted on 11/16/2009

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My daughter has Spondylocostal Dysplasia...fancy way of saying she is missing ribs, has rib fusions and various spinal abnormalities. My biggest fear is not knowing what lies in store for her. There are only 118 known cases world wide. I'm worried about bullying, walking through crowds, being in a car accident, slip and falls. I'm worried about whether her chest cavity will continue to grow proportionately for her lungs and heart. I'm worried about whether she'll have a normal physical relationship when she gets older. I'm worried that, if she chooses to have children, they will also have the disorder especially since we have been told that every generation will have more marked abnormalities to their spines.

Rayelle - posted on 11/16/2009

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I have a disabled child and I worry about what would happen if I was to die, the difficulties with getting her schools to understand her issues and having her DR be helpful in how to care for her.

Trish - posted on 11/15/2009

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I can appreciate the many posts here, especially inspiring is Ida's. I too am a single mom, but raising two special daughters (only one, my youngest Laura (13), is disabled). Laura was diagnosed with CP at 8 months old, labeled MR around 8, and developed epilepsy at 11. Laura also has sensory issues and autistic qualitites.
All of these labels amount to nothing when you meet Laura. She is a social butterfly who never meets a stranger, and brings many a smile everyday. She is silly and adventurous and keeps mom on her feet.
I can only attest to my own situation of raising my girls on my own with no family to help, and an ex-husband who is depriving himself and Laura of a beautiful relationship (he has one with our oldest). Life is definately hard raising a special child, especially if you are doing it alone, but there are also many rewards-the unconditional love a special child has to offer is like no other-to name just one!
What the future brings is unknown, we can only ask God for guidance and trust that his plan is right for us. I worry about my daughters future and at this point do not see her living independantly. For now I am ruling out any type of group home and see myself taking care of her for as long as I can....I hope we can travel the world together and develop a life for her outside of our circle of me, her and her sister. Any thoughts from a experianced mom in this area would be appreciated....

Rachel - posted on 11/15/2009

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I am fearful of the grieving process, having to let go of some dreams and replacing them with others. But of course my fears are typical how will I manage their plan of care and how will this affect their success.

Kendra - posted on 11/13/2009

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Perhaps it is the fear of the unknown that many expectant parents and others suffer from. We have fears about many things in life- war, illness, death. We question whether or not we will be strong enough or capable enough to handle situations. But no one can truly know how life will work out or prepare for it.

The one thing I have learned from my son over the past 16 years is that I cannot plan out everything or know how I will respond or react. The world is imperfect and life is messy. Before I had him, I was 20 and newly married. I envisioned a "perfect" little family with happiness at every corner. He was born with spina bifida. I had no prior knowledge as the blood test at that time was not covered by insurance and I had no family background of any disabilities. It came as a total shock. I had two options: deal with it and do the best for my son or not deal with it. And that is just what I have done. Rather than trying to map out his future or my own, we live day by day. We take issues one surgery at a time, one hospitalization at a time. When he was little so many people would look at us and feel sorry for us with their sympathetic smiles. They would give him things and pray for us. Many would tell me how heroic they thought I was. I would smile, thank them, and move forward with my life. I was no hero, and we just took it all in stride. A year ago I gave birth to a baby girl. Did I worry at all that she too could be born with Spina bifida? Of course. But I knew that whatever the case might be, we would deal with it. It wouldn't make our lives any poorer. On the contrary, parents who have children with disabilities (or whatever one chooses to call it) are stronger and better people because of it. The path they follow in life teaches them so much about human compassion, patience, hope, trust, and many more things. I would not be the good person that I am today if it were not for my son. And not only does he inspire me daily, but also those who know him. He is a boy scout and in marching band. There are times when he has blisters on his hands because he has walked too far with his crutches where his wheelchair would not go. He climbs two sets of stairs every week just to go to his meetings.

My question would be, why worry about the things you cannot control? Instead, enjoy what life has to offer, and despite the fact that there will be pain and suffering along the way, find the gifts and miracles that are there waiting for you.

Heather - posted on 11/13/2009

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Fear of germs, flu and sick people! We run the opposite direction if some one coughs or sneezes at Target or any store! This is just fine with me. Sanitizer and clorox wipes are our new best friend. My little boy is now 4! Little Gavin had a heart transplant at the tender age of 3 months. He clung to life on a ventilator till our miracle heart came our way. Wile he cannot go to school due to germs and such, we love on him and are grateful that we have him today and yes everyday is a gift! Thanks for our donor family- we are loving on our little boy and he can share his love to his siblings! Some people dont understand this changes your life he is not cured but will forever need meds, biopsys and doctor visits oh so often. Thanks to God and the gift of Doctors- he is here today so off to enjoy a beautiful day- thank you God for our gift of these precious little children! Enjoy and cherish every moment!

Sally - posted on 11/13/2009

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I'm pregnant with my 3rd child i also had to go through having a amnio last wk i also had this scare with my last child thankfully my last child's test were all clear he is now 7 and doing great also this one's was all clear its a very worrying time and it doesn't matter how many people tell you not to worry you still do me and my partner said if it had came bk that we were carrying a downs child we would still go ahead and have him as he is still our child and we would love him no matter what a child with downs brings just as much joy if not more to your life yes they will face challenges but when they achieve them they will be more rewarding

Joyce - posted on 11/12/2009

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I'm a mom of 3 children. Two of them are already grown up (23 and 20). My youngest is 8 years. All of them will have their birthdays soon. I had my youngest at age 38. When he was 9 months old, I knew something was different about him compared to my other children at that age. He was confirmed to have a mild form of autism at age 3 (ASD). I was relieved to know what we were dealing with. Unfortunately, the month he was diagnosed, my marriage officially ended. It wasn't because of autism, but for other reasons. My older children helped me raise my youngest, especially when I needed the help. My young son went through his terrible two's at age 4 (he's incredibly strong) and he had awfully meltdowns because of his poor communication skills. I'm happy to say, it's much better. I am concerned what his teen years will be like. On the positive side of things, he's a sweet affectionate boy and has progressed greatly to a point most people would not know he has autism. Sometimes his symptoms still show. He wants to be a train driver. I think he could be if he continues to receive the right support, learns to work independently. I'm hoping for the best, see what the teen years, then I'll know if I need to be concerned about his adult years. ..... I hope it is going to be O.K.!??? Hang in there all you moms. Each kid will be a different special journey, for all of our kids are special.

Pam - posted on 11/12/2009

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Wow. I am awed by the love on this site and the determination and positivity of the parents and children. My son and I both have ADHD, but it's nothing compared to what so many parents have to deal with.

But think of this: When I was young, in the 50s and 60s, "handicapped" kids frequently didn't go to school, and many were "warehoused" in institutions away from everyone.

Back then I couldn't have foreseen the passage of the ADA and that most everything today in the U.S. would be handicap-accessible (more or less). I never would have thought there would be such things as group homes,employment programs, special schools for those with disAbilities (I like that!) and IEPs for those who are "mainstreamed." Or Ritalin, nebulizers, computers that work by blinking, or prosthetics that allow artificial hands to pick up dimes?

Who could have foreseen genetic testing or the gee-whiz fertility treatments available, or the surge in asthma, ADD/ADHD, obesity and other common childhood problems we see today, but with concommittant remedies? Or that deaf Marlee Maitlin would be a famous actress? Or that a one-legged woman would compete on "Dancing with the Stars"?

Who would have thought back in 1960 that the CP child in my daughter's Girl Scout troop would be able to go camping with them or be naturally included/incorporated in a dance despite being in a wheelchair? Or that the other girls (an amazingly diverse crew in every way) would just "sweep her along" and ignore or accommodate her mental and physical limitations? Or that my kids' middle school would be a magnet school for differently abled kids who would join everyone for as many classes and programs as possible--AND that the "regular" kids would learn to see them as just their fellow students?

With all the activist parents out there, the future has got to be better and brighter for the differently abled. Plus, with all the boomers like me fighting aging tooth and nail, and all the new technologies and medical research happening, I'm optimistic for better care for everyone as we and our kids get older.

BTW, in 1956 my hard-of-hearing mom had a 15-lb tumor while pregnant with me (though no one knew until her water broke & they gave her an X-ray). I was her first baby at 45 years old (she married for the 1st time at 41), and my dad was even more hard of hearing than my mom. I came 2 months early at a little over 3 lbs, and neither of us was expected to live. Back in the '50s there weren't all the neotanal ICUs--and even further back, in th 20s,one of my relatives was born prematurely and they put him in a shoebox in the oven! And he turned out just fine.

But both my parents had awesome careers (mom even had her own TV show on public television at its inception), and the doctor told her that even though I was premature and spent 2 months in an incubator, I was "perfect." My mom just died with all her marbles & in pretty good health at 97; my dad's still going at 89, and other than ADHD (diagnosed in my 40s) and asthma, I'm OK too, and had a pretty normal, pleasant childhood. The odds were stacked against my family, but we've had a great life. People ask what it was like to grow up with older parents who couldn't hear well, but that was my reality and I thought nothing of it, so then neither did anyone else. Your attitude and your child's attitude will determine how people see you.

Katherine - posted on 11/12/2009

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Keep in mind these are only OPINIONS, please do not flag because you disagree. This is a very delicate subject and I caution everyone to be as tactful as possible.

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My biggest fear was that my daughter would be some where on the Autisim scale. I work with children who fall on every range of that scale and from what I see everyday I prayed every chance I got when I was pregnant that she'd be off the scale. I have a very high respect for any parent that deals with a child who has disabilities now it's an even higher respect since I see bits and pieces of what they go through daily.

Victoria - posted on 11/12/2009

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Quoting Jenn:

I only have one....

"what will happen to him after I'm gone?"



Love him with all that you have in you.Keep him and yourself close to God. Make plans now. Start inquiring about places and prices now.God will lead you if you let him.God Bless you and your son.

Victoria - posted on 11/12/2009

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Quoting Sharon:

Lori - is happiness being so brain damaged you scrape out your own eyes for a simple infection because you just don't know any better?

Is happiness being warehoused because your parents died or became incapacitated?

The semi self sufficient adults I helped take care of are a wholly different story than the children but the end result is the same... who takes care of them when I, the parent, am gone? Who will bring them christmas gifts? Who will remember their birthday?



How sad for you that you feel that way.I pray that God will bring someone into your life who can be of great assistance to you emotionally.

Viki - posted on 11/12/2009

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Hi! i am a 42 yr old Momma. When I was pregnant with my 3 1/2 yr old son, I was told due to blood test results, that he would be a Down syndrome baby! This was told to me 4 days b4 my wedding!!! Then while pregnant with my 18mo old daughter, the same results! I saw a different doctor & he explained how the #'s worked against you!!! I'm very Happy to report that BOTH children scored 9's on APGAR at 1minute old!!! My 3 yr old knows his ABC's, counts 1-10, and spells & writes his name after 9 wks in Pre-K! My daughter trys to say ABC's & count with him! So, keep prayers going & think POSITIVE!!!

Loretta - posted on 11/12/2009

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I have two sons. My youngest was diagnosed with Autism (Aspergers) when he was 2 (almost 3). Although he is absolutely wonderful and a TRUE blessing...the thought of having another child scared me to death. I have met so many other parents with Autistic children with symptoms so much worse than my son's, and at the rate kids are being diagnosed each year is stagering. There is not a day that goes by that I DO NOT regret getting my tubes tied.

Shannon - posted on 11/12/2009

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Okay...I've been reading a lot of everyone's comments. I failed to mention what my child told me once. You see, my disAbled child teaches me way more than someone else could. If I could wish his health back for his sake...I would in a heart beat but I simply cannot...so we press on. We were talking one day and he told me that it's not so bad being sick, for it does have its good moments and then he began listing all the things that we've been able to do just because of his situation that we wouldn't otherwise had the opportunity to do. Like: the Make A Wish Trip, meeting Drake Bell, going on several trips, becoming a Miracle Child for the Children's Miracle Network, going to all the camps that he loves going too, etc. This was him telling me this. Then he also one day out of the blue asked me what I thought my Grandmother was doing up in heaven right now. I told him she loved to sing but due to the trek in her throat she wasn't able to for the past 10 years so she was probably up there singing her heart out for Jesus. He told me that he wasn't afraid to die because he knows where he's going and that he can't wait until he gets up there so he can run and play like all the other children can. I thought I was going to bawl my eyeballs out!!! He is a blessing and we've had many opportunities to share with others. My fear is losing him some day and that's why every moment counts with all my children because we never know whether healthy or not how long any of us will be here. We are not promised tomorrow...so make each moment count...Like the song Tim McGraw sings: Live Like You Were Dying.

Donna - posted on 11/12/2009

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My major fear is that someone might not be able to help Andrew with the quality of care that we (Our family) has provided for him throughout his life when we are not able to. We want to make him as independent as possible and expose him to many things in life so he can rely on himself when he really needs to.

Meredith - posted on 11/12/2009

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I've had a son pass 11yrs ago. He was born with a chronic illness that wasn't known until he was a month old. I had to make decision's to give him a feeding tube, or have a DNR on him. It was a long road to travel. We were in and out of hospitals, up all night with feedings, that took so long with the tube. But I remember asking God to let me keep him even if I had to carry him around his whole life, that wish wasn't granted, but I'm glad he isn't here sufferring any more. I am glad that I was blessed to have and know him in that short time, but I do question now what would my life be like if he were here and I had to do all that carring for him and worry what would happen when I'm gone, not that I wouldn't take him back in a heartbeat, but I know my life wouldn't be the same now. A handicaped child is hard to take care of and will make life harder and put more challenges on us then others, my grandmother is still caring for my mentaly retarded uncle who's in his late 40's. He needs everything done for him. She worries about what will happen to him when she's gone, and prayes that he will go first. I feel for all of you who do face this challenge and hope that your journey will leave you with many smiles and laughter then with the hard disstressed memories.

Kelli - posted on 11/12/2009

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having a child with disabilities is hard enough but to make a statement about a perfect child is irrelivent evey child is perfect in their own way, and bsides that r u perfect nobody is perfect.

Kelli - posted on 11/12/2009

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none i have a 9yr old son with down syndrome.As long as you r willing to work hard and dedicate urself to da baby ur out will b what u make it.love is all dat baby will need and will recieve as long as he/she has u

Mary Anne - posted on 11/12/2009

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Hi again Yvonne, I've read so many of the responses to you, and hopefully you hear all of the wonderful things. Each child brings goodness into our life, and a child who has a disability sometimes even more so. So as a parent we have fears for all of our children, but a child with special needs brings different fears. However, the child brings many unique characteristics into a family that go beyond anything we could imagine when we first start out as their parent. The family is often closer, and yes we are always looking for help, solutions, ideas, but the people that will help you are out there, the new friends you will make to help you and your child, are pretty amazing. And your child will bring you happiness like all of your children.
There are some things you should learn about like government programs available, support groups. special needs trusts, and writing down what you learn. But one thing I have learned is that other parents will be there to show you the way. And this child will be one of the rare gifts you have been given in your life.

Maree - posted on 11/11/2009

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What a lovely soul you are Mary and how lucky the child was to have u come in their life.

Maree - posted on 11/11/2009

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Quoting Mary :

I had a son with cerebral palsy and a host of other health issues. My greatest fear for him was that people would not see him for the person that he was nor would they invest the time needed to help him reach his fullest potential. He was not my natural born son, we came into each others lives when he was six. He was a wonderful and unexpected gift to our family. So to you Mom's out there worried about who would care for them when you are gone...there are people like me who would find it an honor to treasure your special someone and help them to have a happy life.


 

Donna - posted on 11/11/2009

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I too have a child with a disability, I was told my AFP test was normal and had a level 2 ultra sound with everything cleared. When Andrew was born he had Down Syndrome and intestinal problems which led to a colostomy at 2 days old, Our family's life changed forever that day, it was very confusing, sad, shocking, and upsetting because we didn't get that perfect child that we all dream of, it felt like our future was now uncertain and we had not idea what was in store for us. One thing was for sure, we didn't want anyones pity and we were going to go on no matter what the future held. As it turned out this was the best learning experience of our lives. Many others will never have to step out of their comfort area and will not experience people with
disabilities, will not learn how to be humble, learn humility, how to be patient, how to enjoy the simple things and be thrilled when their child does something simple that others would have done a long time ago. Our life is not boring, this
challenge has involved us in many paths, we have met other parents, professionals,been on boards , committees, It has made us advocates in our school systems for our child we have continually taught our teachers, and professionals about our child and we strive make a better future for other children who are disabled. We continue our life learning everyday, one thing we have learned is not to complain about useless and petty things and try not to take life for granted, Andrew is a Joy and is full of love and for the most part has the same feelings as a typical person, he wants for the same things, he just needs a little help more often than most people and it can be more often than not.
Our goal for him is to be a person who can give back to society by getting a job, live to his ability independently and feel good about himself.

Tammy - posted on 11/11/2009

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I have been an RN for 32 years. It took me a while to realize that those who need our care and help are teachers for us. They teach us to be patient, nonjudgemental and how to serve. The question is not whether the person that needs care has a "meaningful" life--the question is how does caring for this person bringing meaning into the lives that are touched.



One very old man (92) once told me that he was "good for nothing" and that "we should take him out to the back pasture and shoot him like an old horse." At the time we were really struggling financially so without really thinking about it I said what was on my mind. "Oh Jim, please don't say that, I really like caring for you, and I really need the job security! If you died how would I buy groceries to feed my 5 children. Please be happy to be here, because I am really happy to have you here."

After I said it I was kinda shocked at how it sounded and I started to apologize--but he started to laugh and stopped me--his response was 'So my life makes it possible for you to look after your family and raise the next generation so I should stop bellyaching??" When I nodded his response was--"well OK, we have a deal then, I will live and you will get paid for looking after me and I will have a purpose in living--only I think that you should bring those kids in to to see me so I will know that it is worth it."

It was a sad day 5 years later when he died in his sleep--but he never stopped talking about our agreement--and he recognized what he contributed to ALL of his care givers and their families.

So no matter how challenging your child's life might seem they are here on earth for a purpose--not just for you but for the rest of us too--and God will find a way where there seems to be no way, He works in ways we cannot see--he will make a way for me. Ask Him to make the way so you can relax and know that he loves your child more than you do--and if you can't care for him he will provide someone else who will>

Shannon - posted on 11/11/2009

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My fears...too many to list. I have a child with multiple disabilities. My husband and I had 5 healthy children until 3 years ago and that is when our world was turned upside down. Our youngest, who was 7 at the time developed some symptoms that I was uncomfortable about. To make a long story short, he ended up in the hospital and was diagnosed with a very rare kidney disease. Five short months later he ended up in total renal failure and was put on dialysis. They trained me on how to do dialysis at home and a few weeks later we were sent home. Six months after dialysis began, he developed heart disease. We almost lost him twice. They told me to be prepared to make some very difficult decisions. He defied all the odds and two weeks later walked right out of the hospital. His heart works at 40%. He's developed other conditions along the way. I guess if I'd admit to it...my biggest fear is...how long do I have him for? I can't dwell upon that though cause it would drive me literally insane. I take it one day at a time and I make every moment count. Nobody is promised another day regardless of their health. I have learned a lot of things these past 3 years and that is don't take anything for granted!!!

Jess - posted on 11/11/2009

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Wow! That was an amazing response. How wonderful to put something potentially negative into such a positive light. Thank you.

Carrieann - posted on 11/11/2009

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We have 3 children and are currently trying for our 4th. Our first child was our beautiful baby girl who was born with Down syndrome . It was a very scary time but let me tell you this, she has changed our lives FOREVER!! She is the definition of unconditional love. She has taught us sooo many things and is literally the light of our lives. She walks into a room and it lights up with love and happiness. She is so infectious when she smiles and laughs. It's been challenging at times but when is raising children ever easy? :) When we got pregnant with our other 2 kids everyone asked us if we were afraid that we would have another child with Down syndrome. The answer was simple. We would be blessed no matter what God chose to give us. She is a shining example of his love!!

Lydia - posted on 11/11/2009

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My biggest concern was "would I be able to give them what they need?" I have never worried about who would care for them should anything happen to us because some of my nearest and dearest are actually trained and have worked with people with disabilities and would care for her whatever the circumstances.

Mary Anne - posted on 11/11/2009

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Hi Yvonne, I'm a mom of a son with a disability, and I grew up with a sister with cerebral palsy. My sister Marcia taught me so much about life, and though she has passed away, she has helped me understand what is really important in life. Through her and my parents, I learned about the dreams and fears they had for her, and I now have those dreams and fears for my son...

Those dreams and fears have driven my whole life, and I now work with families all over the country helping them address their concerns. I have formed a whole network of people and services who can help find resources, get government benefits, I'm helping coordinate some new special needs houseing, and help persons with disabilities find jobs. It is all about believeing that we can make a difference, and that every single person deserves the best life possible. I'm a believer that we can change the way things are, and it is just taking one step at a time. There are lots of resources at www.protectedtomorrows.com if that will help you.

Mary Anne

Rachel - posted on 11/11/2009

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My only fear is if and when I die who will take care of her. I made the mistake and was talking to my oldest daughter in the car one day and i told them I needed to loose weight so I could be around for a long time and not die. She replied if you die i'll kill my self. Well i've never made that commet again.

Lesley - posted on 11/11/2009

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Quoting Julie:

My daughter has cerebral palsy and my major fear is what is going to happen to her when I am too old to take care of her. Who will take care of her? No one will ever take care of her like I do of course but it just weighs heavy on me that I might not always be there to take care of her and is it fair to put that burden on other family members? Anyone else feel this way?



this thought goes through every mothers mind everyday  and will most likely always bn there.But take everyday as it comes there is no use worry now enjoy yr child and be happy xxx

Lesley - posted on 11/11/2009

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hi yvonne my name is lesley i have a little girl who has cerebral palsy affecting both her arms and legs never a day goes passed were i dnt think to myself did i make her have this or wat if i had caused her to have this.Katie was ten months old when i found out she had c.p but i knew when she was born that sumthing was wrong but hand on my heart i can say i wouldnt change her for the world she is my life i am her fulltime carer and i just worship her and i adore her she is the most loveable and smartest child i no.Yeah it was hard in the beginning but u say so wat if my child is different i have her here with me if you ask my daughter katie wat she says is look its my legs that dnt work and off she flies in her elec wheelchair sumthing i thought she would never do and if and i say IF you listen to sum doctors they said she most likely wouldnt do have the stuff she has achieved she goes horse riding and plays out in the street with the rest of her friends and she never stops talking but says to yrself there is always sumone out there worse of than you.katie even has her bebo site and i have set a site up to called.... helpkidswithcerebral its a bebo site feel free to join....I hope this helps you understand our kids may have a disibility but there here with us and special children are precious xxx

Julie - posted on 11/11/2009

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Well I should have read the other posts before I wrote mine, apparently my concern is a major one with parents. I also agree with the mom that says that her fear that people won't see them for who they are and help them reach their full potential. That is always a major problem in their lives.

Julie - posted on 11/11/2009

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My daughter has cerebral palsy and my major fear is what is going to happen to her when I am too old to take care of her. Who will take care of her? No one will ever take care of her like I do of course but it just weighs heavy on me that I might not always be there to take care of her and is it fair to put that burden on other family members? Anyone else feel this way?

Teresa - posted on 11/11/2009

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I also have a disAbility, Epilepsy. Even though my son is 20 I am so afraid of what would happen if he saw me go into a Grand-Mal seizure when my husband isn't home to help me. My son wouldn't know what to do..call dad or dial 911 for help

Ida - posted on 11/11/2009

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I would like to calm folks fears/concerns about having a child with a disAbility in anyway I am able. Every life is a gift and every person holds gifts within them to be shared to include children with a disAbility. I always write using a capital A so people will focus on the word ABILITIES and not the dis. According to Webster's "dis" means four words: It does not work. People with disABILITIES do work or at least have the desire and many of us fight daily to create attitudinal change in society, not so much for us as adults now, but for the future of little ones that happen to have a disAbility. I am a single Mother of two adult sons, and I raised my sons from a wheelchair. I did not have parental or sibling support, it was truly God, my sons and myself. Our every need has always been met. Anyway, during my infancy I had severe polio and several other childhood diseases, 19 surgeries before I was 16 years old. I walked with braces and crutches until about 26 years ago when God gave me my wheels, so I can wear high heels and pretty shoes. Only kidding, but true to a point I never enjoyed the experience of putting beautiful shoes on my feet until I received my wheelchair. Please understand that life is truly a beautiful gift and truly if you have a child with a disAbility you Moms know that is truth. I teach children and young adults with various types of disAbilities, [Downs, Autism, CP, etc] sign language and the blessings I receive are to numerous to begin listing. My point of writing this comment is to let expectant parents, new Moms know that LIFE IS A GIFT, and there are several people who happen to have a disAbility [ies] who will share and help in Anyway possible to calm your fears and concerns. The greatest gift each of us have is the GIFT OF LOVE, which we are called to share with each other. Love in the aspect of
L: Life is a gift
O:obeying God's laws
V:victorious is the person who lets life come from within
E: everlasting, eternal with God does the four letter word begin.
God gave me this definition in October 1988 when I was searching for the meaning of love. I truly hopes this helps someone on the Circle of Moms website. PLEASE remember: ALL of LIFE is a beautiful GIFT. Ida B. Esh't

Teresa - posted on 11/11/2009

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I agree with Jenn, I have an Autistic son. I never would have thought in a million years that he had it. He grew up "normally" Talking, walking, eating at the right stages until he reached age 2 then it all went away. He was diagnosed at age 4. Thank goodness he started talking again but he eats a limited diet.
I wonder who will take care of him once I'm gone, I don't want him put in a home for the disabled.

Eadie - posted on 11/11/2009

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I had that fear with my 3rd child. They did an amniocentesis. The results came back that the baby would have down syndrome. I was 33. I didn't worry about it because it was my child and I would love it anyway. My husbands mother told me to get rid of it because they didn't want that type of child in the family. I was devastated. Thankfully I did not get rid of him. I was put on strict bed rest in the hospital for 2 weeks then 4 months to which I had a predetermined c-section. He came out perfectly fine of no symptoms at all. So even with the amniocenteses, it is not always perfect. Good luck to you.

Tanyia - posted on 11/10/2009

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I worry about the future,i have 5 beautiful children,so i have been blessed with 4 healthy children and i have one child with aspergers and low muscle tone.He is high functioning,so i know things could of been a lot worse.But still not knowing what the future is going to be like,when now it does feel like everyday is a struggle.

Liza - posted on 11/10/2009

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My son is bipolar and when I started learning of all the bad stuff adults with bipolar suffered with drug/alcohol abuse, criminal activity etc. my biggest worry was him just being able to live a regular life. I work so hard everyday to try and stear him away from every obstacle that I may feel could lead him down that path.

Sharon - posted on 11/10/2009

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Lori - is happiness being so brain damaged you scrape out your own eyes for a simple infection because you just don't know any better?

Is happiness being warehoused because your parents died or became incapacitated?

The semi self sufficient adults I helped take care of are a wholly different story than the children but the end result is the same... who takes care of them when I, the parent, am gone? Who will bring them christmas gifts? Who will remember their birthday?

Lori - posted on 11/10/2009

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Sharon,

Every human, perfect or not, deserves to live the best life they can with the abilities that they have. I don't think it is up to anyone else to decide what their quality of life is. Sure, it may seem like these kids have no quality of life, but maybe through their tears and suffering, there is also a smile, coming from the knowledge that there are people who love them and will fight for their well being. I was blessed with 2 perfectly healthy children, but I also have a developmentally challenged brother and sure, you wonder what would change if they were "normal", but I don't think any of us have the right to define what normal is. Every being put on this earth has a purpose, however minimal it may appear to someone else. I wish I could take his challenges away and I often wonder what his life would be like if he were born differently, but the fact remains that he wasn't and we all love him and include him as our family, regardless of challenges. Don't assume that these people don't have happiness, even though it may come in a different form, it is still there.

Sharon - posted on 11/10/2009

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Jenn is right. Other daily practical concerns come in too.

But I used to take care developmentally disabled adults. Her fear (and mine) all the same - I don't know who will take care of him and love him when I'm gone.

I worked with semi self sufficient adults too. They had simple jobs, could take the bus to their jobs. But they needed to be reminded to take their birth control pills, keep condoms on hand, take other meds, go to regular check ups.

Then there is suffering. Another lady took care severely mentally & physically disabled kids. She had a gorgeous home but the kids... sitting on a step drooling. Eyes missing, machines breathing for them while they lay in their bunk or sat in their chair being fed baby food because they would choke on anything else. Who deserves to live like that?

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