Living With Spina Bifida
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This precious little girl, Lily, is my twelfth grandchild. She was born with spina bifida. It is a birth defect of the spine. When her mother was just a few months along, she went to have a routine sonogram and to find out the sex of the baby. Instead she was told that the baby had an abnormality.
Although her parents were very sad, they wanted to keep the baby and raise her. We all love Lily so much, and are learning the best way to take care of her. So many people have helped our son and his family and we are so grateful. Also her brother and sisters, cousins, aunts and uncles are so supportive, and try to help Lily as she grows and needs extra help.
Spina bifida occurs during the first months of development in the womb. The spine and back bone do not close all the way. There are different stages of the disability. The condition ranges from mild to very severe. You can read more about spina bifida here.
In Lily's case, her back bone was outside of her back encased in a sac. She also had hydrocephalus (extra water on the brain), the Arnold-Chiari Malformation, and bilateral club feet. The opening in the spine started at the level L1 and was quite severe. She had an operation to close her spine when she was only a couple of days old. She also had a shunt put in her head when she was a week old to drain the extra fluid out of her head.
Lily is now over a year old. She cannot feel below her waist and cannot crawl but she can pull herself across the floor with her arms. At first she could only go backwards by pushing herself with her arms. It took her a while to get the idea of moving forward. She complains while she is pulling herself forward, but she can move quite easily now. Her mother has told me that recently she pulls herself all cross the kitchen floor as well as on the carpet. She is a very happy sweet baby. You can read more about our little Lily here.
My son and daughter-in-law are very involved with the Utah Spina Bifida Organization. They find comfort in meeting with other families who are also dealing with this disability. You can read about some of these wonderful individuals on their blog above. Some of these children and adults have amazing stories and have done very well despite their disabilities.
Little Lily has had physical therapy to help her strengthen her upper body which she uses to do everything. As you can see from the pictures, her feet were turned in quite badly when she was born. The doctors had to cut a little tendon on each leg so they could straighten out her feet. She then wore casts on her legs for several months. After that she was fit with braces and had to wear then all day and night for quite a while. Finally her feet had been corrected enough so that she only needed her braces on at night.
Most children with spina bifida have problems with their bowels and bladder. Because she has no feeling in her bottom half, she cannot void regularly and her parents must catheterize her several times daily.
Research is being done to determine what causes spina bifida. So far, they have discovered that a lack of folic acid in the diet of the pregnant mother may cause this abnormality. Folic acid is found in foods like egg yolks, broccoli, spinach, and oranges. They are also studying if chemicals or genes contribute to this disability.
Thanks for letting me share my beautiful granddaughter with you. I know many families live with children who have disabilities but with support and prayer, we can help them live a happy life.
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Thanks so much DavitosanX. You are so right. We all learn from helping others.
That was a very sad reading but at least you are a supportive family. I am so sorry. My best wishes to Lily and her parents.
My 12 year old was just diagnosed this year. I feel for your family, but I can tell that much love is being spread around.I will include them in my prayers.
@Hello, hello - I appreciate your kind thoughts.
@BJBenson - It does bring the family together in many ways. I am so excited to see her soon.
My heart goes out to you and the rest of Lily's family. She is absolutely precious. I'm so happy to that even though an abnormality was discored, that her mother still decided to have her. Unfortuatley that is not the case for all and those people are missing out on some of the greatest gifts God could ever give. Thank you so much for sharing this.
Thank you Cari Jean for your comments. I was grateful that my son and his wife chose to keep Lily. We feel blessed to have her as part of our family. We can feel God's love through her.
elayne001,
Thank you for sharing this sad but inspiring story. Lily Ruth is a beautiful baby and deserves everything life and God will give her. You are a wonderful family and I know she will be loved and cared for as she grows! Blessings!
I appreciate your comments Smireles. Many people live with disabilities but they rise above them - here is an inspirational video that I found this morning:
http://www.youtube.com/watch?v=KHDvxPjsm8E&feature
Have a great day.
Lily will change lives in great and positive ways that will go beyond understanding. And it is likely she has already. I have no idea of the frustrations that accompany your family's committment to Lily in providing for her and teaching her and so much more; I am sure it is not easy...but threaded throughout this hub is love, committment, tenderness and mercy and joy and contentment. Thanks for sharing a part of your journey with us,
CS
You are right that Lily has helped us all to be more charitable and loving. So many neighbors and family members are helping out too. Of course all the medical bills have to be paid also and we have all been blessed to be able to contribute to that also. Thanks for your comments coffeesnob.
My heart goes out to you and your family. It is amazing children live with this condition, but they do. And they seem to bring the best out in all of us.
You are so right HealthyHanna. It does bring out the best int he siblings as they are so helpful and loving towards Lily. I only feel frustrated that I cannot help more because we live so far away, but we will be going there next month. Yeah!
Thank you for sharing your personal story.
She is the prettiest little girl
We think so too FrankiesGirl6Yr. She has pretty blue eyes and a big smile. Thanks for your comments.
@Sandyspider. I am glad you stopped by to read our story about Lily. It is hopefully to bring more people to the awareness of spina bifida and how we can help. Thanks.
What a wonderfully written hub. I admire your ability to be positive and go forward with faith. Like other people who have commented, I believe your granddaughter will be an inspiration and an angel to all those in her midst. May you continue to have the strength you need to be the grandmother she needs. Aloha.
Thank you Pamela - yes, I hope and pray I can be the grandmother she needs. I think there are many angels in our midst.
I think that some brave souls are born among us to show us how to go beyond the physical to see the true beauty that resides in all of us no matter how hidden it may appear to be, it is there - and those such as your Lily are the beings who light our way! They actually show us how to restore our remarkable ABILITY to LOVE, there is no DIS about it!
I truly appreciate your words of comfort and know you are right. We have so much to learn from Lily about love and life.
Touching and beautifully written, Elayne. And with medical discoveries today - perhaps withing Lily's life more help will be found for the maladies that beset her. But the main thing is that her spirit will inspire others.
You have a beautiful little granddaughter. Thank you for sharing your knowledge on this topic.
@Nellianna - I truly hope they can discover a way to help those with spina bifida. We can only hope and pray that it will come soon. Thanks for your sweet words.
@ediggity - We are still learning every day about this disability of spina bifida. Thanks for stopping by and commenting. Thank you.
Hi there Elayne, Its incredible what doctors can do these days. I know that Lily has what she needs most, and that is your love. Bless you, and your family.
Thank you for sharing elayne. Good luck to Lily and you all.
@lightning john - I know the doctors are trying to help Lily and we are so grateful for their knowledge and help. Thanks for your comments.
@ethel smith - Glad you stopped by to read about our lovely Lily. I appreciate your words of support.
Thank you for sharing such a wonderful hub. I know Lily personally and am so grateful that she was born. She has an incredible spirit! Great hub.
Thanks LianaK for your welcome words. Yes, Lily is such a beautiful spirit and can teach us all so much. Thanks for all you do for her and the family.
she is blessed to have you and her parents, happy Mothers Day elayne, Maita
I had a great Mother's Day prettydarkhorse. My daughter made a video for me of all my grandkids that live far away and it was really fun for me to watch. Lily is talking now - she says yeah when you ask her something. So cute. Thanks for commenting.
elayne001 I have never heard of that before- your story really touched me. Thank you for sharing and for the information. May you and yours always be blessed a thousand fold.
Thanks so much dugger62. Yes, it is not so well known but it is great to be aware of this disability. I appreciate your comments.
You can gaze into Lily's eyes as she determinately crawls along the floor and see a zeal and zest for life--while she may be different from other humans, her spirit is as vibrant as any others.
Touching, thank you.
I agree Ixxy - her eyes have a special light in them. She is a special little spirit and we are blessed to have her in our family.
elayne001, my cousin was born with Spina Bifida. It was, fortunately, not one of the most extreme cases; but she went through surgery as a newborn and would eventually have more surgeries in an effort to straighten her feet/legs. She didn't walk until she was five, but she eventually was able to walk with difficulty. She and I played together regularly as children. Before the later surgeries, she'd wear leg braces. She was a really smart girl, and that helped her develop a good attitude about her difficulties. Later, she spent some time in a wheelchair with casts. My aunt had to do foot/leg exercises for ten/eleven-year-old daughter. My cousin is older than I am, but my aunt would ask me to check my feet because she wanted to compare them with my cousin's, to see how her daughter's feet were coming along. It made me learn young not to take for granted things as simple as having two straight feet and the ability to walk effortlessly. My cousin's goal was to be able to walk in regular shoes, and without crutches, at her high school graduation and in my sister's wedding. She accomplished that goal.
Today, she's not all that far away from turning 60. I just spoke with her a few weeks ago, and I still admire her ability to put things in perspective and live her life on her own terms. I just thought my cousin's story might be encouraging for anyone with a child who has Spina Bifida.
Thanks Lisa HW so much for sharing the story of your cousin. Our little Lily is now almost two and she was fit for a wheelchair which she should have by fall. She got in it the first time and could make it go forward and gave a big smile. We are excited that she will be more mobile. She has progressed quite a bit since she became more mobile - she drags herself across the floor and can get around that way, but the wheelchair should really help. Thanks again.
I commend your son and daughter-in-law for choosing life. There is a big emphasis on perfection in our culture, but in reality we are all perfect the way we are created. Thank you for sharing this inspiring hub with us.
Glad you came by to read about Lily Ruth and leave some welcome comments. I appreciate it.
Hi I am very new to hubpages only joined yesterday my grandaughter Sophia also has spina bifida and I have made it a ot of a mission to raise awareness. Sophia is lucky ecause she does have some feeling in her legs and will hopefully walk one day but she too has the associated bowell and bladder problems. Our grandchildren are of a similar age I think Sophia is 18 months old and loves her life thankfully. I wish your family all the very est
Thanks for commenting Ann-Carole. Happy for you and Sophia that she will be able to walk. Little Lily just got her first wheelchair and she can get around in it. We are excited for her to be more independent.
DavitosanX 2 years ago
It's unfortunate when someone is born with a disability, but when you're surrounded by love, that disability can be turned into an incentive to do great things.
Good luck to you and your family.