...things are best said by someone else.
Check out what Roman's mommy (Erica) posted.
It's called "Postcards from Holland."
And don't forget your tissues.
http://fourpotters.blogspot.com/2011/07/postcards-from-holland.html?spref=fb
Monday, July 11, 2011
Wednesday, July 6, 2011
Scoliosis after Spina Bifida
My apologies for also being a severe MIA momma! As you may remember, we were expecting a little girl in April. Ellie Reese McGinley arrived on April 8th after a very healthy pregnancy. She was probably the most anticipated little miracle in Little Rock those few weeks by some very special medical staff who took care of the twins birth. I think most of all, we've all been touched by SB and Eli's life and we all wanted to see a happy(er) ending to this chapter. And we got it. I could go on and on about her birth but the main things I want you to know is we were given exceptional care in the delivery room. We had requested old staff from the twins birth to be a part of this birth. And they all came through for us in the operating room, even allowing me to see Ellie, her back, and they gave me assurance that she was healthy. It was a healing birth with what felt like family. 
picture of Ellie and Walker (Eli's twin brother)Within the past few weeks, we have been hit hard by what feels like a golf ball pegged us in the head. One night as I was burping Ellie, I noticed her back looked crooked. But being a paranoid momma who knows way too much about SB, I convinced myself that I was being too paranoid and I brushed it off. But when my husband asked several days later if I 'thought her back looked crooked', my jaw dropped and it became real....again. During her 2 month checkup, I asked our pediatrician to look for us. She is a dear friend of ours and held her composure well when I reluctantly asked her. I don't want to be that 'momma' who has to be the paranoid one who asks too many questions. She didn't seem to mind and proceeded to send us to xray for reassurance. The next day, I got the call: Radiology report stated 'Fetal Congenital Scoliosis'. We were sent to Arkansas Children's Hospital for a repeat scan the next week. Outcome? They are ruling it a 'positional' situation right now because she is not able to sit up or stand on her own yet. But xrays are clearly showing a 20-degree c-curve. We are praying it straightens out between now and the walking stage. But if not, she's still perfect in our eyes. We've dealt with worse. We can handle this.
What are the chances of having a repeat spinal situation? Eli's severe SB diagnosis upon birth hit us hard. This, well, not so much. We hated to hear it but she's here with us and a seemingly happy baby. We will hold our heads up and be thankful for her sweet little life. What a gift she is.
National Conference:
So I owe some of you a very BIG thank you! The Project Eli director, Julie Mayberry, attended the national conference and spoke on Monday evening. She had around 50 in attendance but said through out the conference as she met people and told them who she was and what she was promoting, she received a lot of "I've seen this before!" and "I've heard of this". She's not a blogger but told me it must have been this blog and the connections that you amazing families have on here. To date, the Project E.L.I. documentary has been handed out to 2,000 families, clinics, or physicians! It also has close to 900 hits on YouTube. We are all saving babies lives! Haven't seen it yet? Here's the link to watch the 30-minute documentary on YouTube: http://www.youtube.com/watch?v=FSKgPMv4QPQ
Please know that they were able to do this because of donations and are still relying on donations to make more copies to pass out. If you or your organization wants to help, please check out Eli's First Giving Page:
Eli's birthday is coming up in 4 weeks. He would be 2 years old. We are faced with having to celebrate their birthday again this year, as every year for now on, with only Walker. Its the most dreadful week to celebrate 2 births and a death all in one week. It's getting harder to breath again, as I felt this last year. Please say a little prayer for Eli on August 3rd. And hug your babies tight.
With Love,
Jodie McGinley
Tuesday, July 5, 2011
Insights and MIA
So, sorry I've been MIA for the last two weeks. I've been throwing myself a pity party that so many of my SB mama friends were enjoying the national conference while I dealt with stuff here at home... But you know, yesterday, I saw some WONDERFUL photos on facebook and some blogs that lifted my spirits. Pictures of you. Eating together. Laughing together. Fellowshiping. And having a great time.
I loved them. Even though I wasn't there, I felt a smile spread across my face at seeing you all have such a great time. And even more when I read about your encounters. I've already informed the husband that I WILL be going next year.
*smile*
-----
Oh, and did you get your "Insights into Spina Bifida" magazine today? Yeah, me neither. Actually, I've been going back and forth with the SBA for a while about my subscription as we haven't received ANY issues since we subscribed more than a year ago.
BUT... I did hear from Colleen on my facebook wall today that my kids are on the cover.
Which I'm totally excited about. Now, if I could just get my hands on a copy!!
(I have read the article written by Carole Barnhart, and I'm including the text below. You might recognize the piece by my son, it first appeared right here on SpinaBifidaKids!)
----- ----- ----- ----- ----- ----- -----
In February 2005, Tim and Karin Henn of Columbus, Ohio, welcomed two new sons into their family. Isaiah was eight and Isaac was four. They came to the “Henn House” from the foster care system, with distant memories of a baby sister they hadn't seen since Isaac was 17 months old.
“Tim and I never intended to have birth children,” says Karin. “It was our desire to build a family through adoption of special needs sibling groups. But as soon as the boys arrived, they began praying for a new baby sister. By Mother's Day, I was shocked to discover that I was pregnant!” Esther-Faith was born nine months later with Spina Bifida, beginning what was to become remarkable relationships with her two brothers.
A Spectrum of Emotion
“The siblings of children with Spina Bifida often experience a wide range of deeply complex emotions,” observes Melissa Bellin, PhD, MSW, LCSW, Assistant Professor at the University of Maryland School of Social Work in Baltimore, Md. “It is typical for feelings to fluctuate from occasional jealousy or embarrassment, through protective watchfulness to profound compassion and love.”
“I have definitely seen the protectiveness in both my boys,” Karin notes. “Isaiah once drew himself up and stared down some kids who were making rude comments. Isaac, too, has stepped up in her defense.” Perhaps because of the difference in their ages, Karin has not seen evidence of jealousy or embarrassment. The boys do become frustrated with Esther-Faith's medical needs—as much from concern for her as for themselves. The nighttime routine gets tedious at times, but Karin and Tim make sure they spend one-on-one time with each son, hoping to avoid their feeling overlooked or unimportant.
“Especially when there are medical crises or hospitalizations, siblings of children with Spina Bifida are at risk of feeling undervalued,” says Dr. Bellin. “For that reason, I recommend that parents encourage positive attachments with caring adults outside the immediate family so there is a safety net to support the siblings' needs during especially stressful periods.” For Isaac, daily contact with his grandparents have woven the safety net that has allowed him to stay on an even keel during Esther-Faith's hospitalizations. Not so for Isaiah.
A Healing Connection
Because of the boys' early life experiences, Isaiah and Isaac both have what is known as 'reactive attachment disorder. “It is difficult for them to form trusting attachments,” Karin explains. “It is so severe with Isaiah, that Tim and I had prepared ourselves to never have deep attachment with him.”
Enter Esther-Faith. Karin describes her and Isaac as “the best of friends.” Often, Karin will find the two of them curled up together, Isaac reading to Esther-Faith, or teaching her to read. For Isaiah, his relationship with Esther-Faith is perhaps the only positive attachment he experiences. “The connection I see between Isaiah and Esther-Faith has given Tim and me hope that some day we may eventually connect with him too,” says Karin.
“We thought that because of Isaac's connection with her, he would become undone when Esther-Faith was in the hospital for three weeks last year,” remembers Karin. “We were surprised to see the opposite happen.” When he sensed the stress level rising, Isaac stepped up to the occasion, doing extra chores without being asked. His grades even improved in school. “He seemed to understand the influence that his actions had on the rest of the family,” Karin says.
Isaiah responded in the opposite way. As the hospitalization dragged on, he got into increasingly more trouble at home and at school. “We tried to give him as much time with his sister as possible,” Karin recalls, “but it seemed that he really couldn't handle having her gone. It truly illustrated for us how critical that one connection is for Isaiah.”
Hidden Rewards
Dr. Bellin's research has discovered that as siblings of children with Spina Bifida grow older, most come to accept and appreciate the unanticipated rewards that come with their situation. “Many of them grow toward an appreciation for their own health, and an increased respect for diversity,” she notes.
Karin knows that her boys are aware of how difficult life can be for Esther-Faith, but she has not seen them translate that awareness to themselves. “Isaiah has expressed his sadness at the medical procedures and the limitations Esther-Faith has to endure,” she explains. “But I haven't seen him apply that experience to himself. When he runs a charity race, he says he is running for Esther-Faith. Isaac doesn't seem to see Esther-Faith through the lens of her disability at all. When they play together, he just makes it work for her.”
Respect for diversity is a given for members of a trans-racial family such as the Henns'. “Difference is the only thing they know,” observes Karin. Even with their own personal struggles, Karin believes that none of her children would claim to have “special needs.” “We've been through difficult times with the boys,” she says. “But we've learned to separate their behavior from their person. When they get into trouble, we remind them that it isn't their fault, it is their problem. And problems have solutions we can work out together.”
If Dr. Bellin were to communicate one message to the families and health care providers of children with Spina Bifida, it would be the need to remember that the impact of a disability reverberates throughout the family. The Henn family is testament that those reverberations are often as positive as they are negative.
[pullout]
Dr. Bellin remarked on the complexity of emotion experienced by the siblings of children with Spina Bifida. When Isaiah was 13, he captured those conflicting emotions in a family blog.
Hello! My name is Isaiah. I am 13 years old. I was nine years old when I found out that my brand new baby sister had Spina Bifida. I was nine years old when my life changed forever, and it has made me the brother to a sister who I never knew would have to go through so much just to take a step.
When I found out that my sister, Esther-Faith, had Spina Bifida, I did not know what to do. All I knew is that I had a sister. But when I walked into that room, I heard the news, and I realized just then that I would have to work harder.
I was trying to be helpful by staying out of the way. I didn't want to get in the way of the doctors or the chaos. We already had enough of that! I tried to do little chores for my parents as well.
Spina Bifida wasn't exactly anything I wanted for my little sister. I hate to see her watch other kids do things that she can't do. It hurts me so much and I can't do anything about it. I was startled to hear that my sister had Spina Bifida. It spooked me out. But when I met that little, tiny baby, I realized it didn't matter if she had Spina Bifida or not, she is my sister. Now, I feel the same thing. Four years and six months later, she is still my little sister.
I honestly did not do any research on Spina Bifida. I did not really know how to use a computer and it did not come to my mind. I was too busy rushing around staying out of the way. But thinking about it now, I probably should have.
It is really hard to see my sister go through surgeries and to have to watch it happen. It breaks my heart. This January, when my sister was in the hospital, I didn't know what to do with myself. Should I feel sad? Surprised? Worried? Scared? All of these? I didn't know. But now I know. Even when she has surgeries or hospitalizations, or has Spina Bifida, I can believe one thing... actually two things. These two things I hold on to. Wherever I am, I take them with me.
The first is that I love my sister.
The second is that I won't ever let her go.
I loved them. Even though I wasn't there, I felt a smile spread across my face at seeing you all have such a great time. And even more when I read about your encounters. I've already informed the husband that I WILL be going next year.
*smile*
-----
Oh, and did you get your "Insights into Spina Bifida" magazine today? Yeah, me neither. Actually, I've been going back and forth with the SBA for a while about my subscription as we haven't received ANY issues since we subscribed more than a year ago.
BUT... I did hear from Colleen on my facebook wall today that my kids are on the cover.
Which I'm totally excited about. Now, if I could just get my hands on a copy!!
(I have read the article written by Carole Barnhart, and I'm including the text below. You might recognize the piece by my son, it first appeared right here on SpinaBifidaKids!)
----- ----- ----- ----- ----- ----- -----
In February 2005, Tim and Karin Henn of Columbus, Ohio, welcomed two new sons into their family. Isaiah was eight and Isaac was four. They came to the “Henn House” from the foster care system, with distant memories of a baby sister they hadn't seen since Isaac was 17 months old.
“Tim and I never intended to have birth children,” says Karin. “It was our desire to build a family through adoption of special needs sibling groups. But as soon as the boys arrived, they began praying for a new baby sister. By Mother's Day, I was shocked to discover that I was pregnant!” Esther-Faith was born nine months later with Spina Bifida, beginning what was to become remarkable relationships with her two brothers.
A Spectrum of Emotion
“The siblings of children with Spina Bifida often experience a wide range of deeply complex emotions,” observes Melissa Bellin, PhD, MSW, LCSW, Assistant Professor at the University of Maryland School of Social Work in Baltimore, Md. “It is typical for feelings to fluctuate from occasional jealousy or embarrassment, through protective watchfulness to profound compassion and love.”
“I have definitely seen the protectiveness in both my boys,” Karin notes. “Isaiah once drew himself up and stared down some kids who were making rude comments. Isaac, too, has stepped up in her defense.” Perhaps because of the difference in their ages, Karin has not seen evidence of jealousy or embarrassment. The boys do become frustrated with Esther-Faith's medical needs—as much from concern for her as for themselves. The nighttime routine gets tedious at times, but Karin and Tim make sure they spend one-on-one time with each son, hoping to avoid their feeling overlooked or unimportant.
“Especially when there are medical crises or hospitalizations, siblings of children with Spina Bifida are at risk of feeling undervalued,” says Dr. Bellin. “For that reason, I recommend that parents encourage positive attachments with caring adults outside the immediate family so there is a safety net to support the siblings' needs during especially stressful periods.” For Isaac, daily contact with his grandparents have woven the safety net that has allowed him to stay on an even keel during Esther-Faith's hospitalizations. Not so for Isaiah.
A Healing Connection
Because of the boys' early life experiences, Isaiah and Isaac both have what is known as 'reactive attachment disorder. “It is difficult for them to form trusting attachments,” Karin explains. “It is so severe with Isaiah, that Tim and I had prepared ourselves to never have deep attachment with him.”
Enter Esther-Faith. Karin describes her and Isaac as “the best of friends.” Often, Karin will find the two of them curled up together, Isaac reading to Esther-Faith, or teaching her to read. For Isaiah, his relationship with Esther-Faith is perhaps the only positive attachment he experiences. “The connection I see between Isaiah and Esther-Faith has given Tim and me hope that some day we may eventually connect with him too,” says Karin.
“We thought that because of Isaac's connection with her, he would become undone when Esther-Faith was in the hospital for three weeks last year,” remembers Karin. “We were surprised to see the opposite happen.” When he sensed the stress level rising, Isaac stepped up to the occasion, doing extra chores without being asked. His grades even improved in school. “He seemed to understand the influence that his actions had on the rest of the family,” Karin says.
Isaiah responded in the opposite way. As the hospitalization dragged on, he got into increasingly more trouble at home and at school. “We tried to give him as much time with his sister as possible,” Karin recalls, “but it seemed that he really couldn't handle having her gone. It truly illustrated for us how critical that one connection is for Isaiah.”
Hidden Rewards
Dr. Bellin's research has discovered that as siblings of children with Spina Bifida grow older, most come to accept and appreciate the unanticipated rewards that come with their situation. “Many of them grow toward an appreciation for their own health, and an increased respect for diversity,” she notes.
Karin knows that her boys are aware of how difficult life can be for Esther-Faith, but she has not seen them translate that awareness to themselves. “Isaiah has expressed his sadness at the medical procedures and the limitations Esther-Faith has to endure,” she explains. “But I haven't seen him apply that experience to himself. When he runs a charity race, he says he is running for Esther-Faith. Isaac doesn't seem to see Esther-Faith through the lens of her disability at all. When they play together, he just makes it work for her.”
Respect for diversity is a given for members of a trans-racial family such as the Henns'. “Difference is the only thing they know,” observes Karin. Even with their own personal struggles, Karin believes that none of her children would claim to have “special needs.” “We've been through difficult times with the boys,” she says. “But we've learned to separate their behavior from their person. When they get into trouble, we remind them that it isn't their fault, it is their problem. And problems have solutions we can work out together.”
If Dr. Bellin were to communicate one message to the families and health care providers of children with Spina Bifida, it would be the need to remember that the impact of a disability reverberates throughout the family. The Henn family is testament that those reverberations are often as positive as they are negative.
[pullout]
Dr. Bellin remarked on the complexity of emotion experienced by the siblings of children with Spina Bifida. When Isaiah was 13, he captured those conflicting emotions in a family blog.
Hello! My name is Isaiah. I am 13 years old. I was nine years old when I found out that my brand new baby sister had Spina Bifida. I was nine years old when my life changed forever, and it has made me the brother to a sister who I never knew would have to go through so much just to take a step.
When I found out that my sister, Esther-Faith, had Spina Bifida, I did not know what to do. All I knew is that I had a sister. But when I walked into that room, I heard the news, and I realized just then that I would have to work harder.
I was trying to be helpful by staying out of the way. I didn't want to get in the way of the doctors or the chaos. We already had enough of that! I tried to do little chores for my parents as well.
Spina Bifida wasn't exactly anything I wanted for my little sister. I hate to see her watch other kids do things that she can't do. It hurts me so much and I can't do anything about it. I was startled to hear that my sister had Spina Bifida. It spooked me out. But when I met that little, tiny baby, I realized it didn't matter if she had Spina Bifida or not, she is my sister. Now, I feel the same thing. Four years and six months later, she is still my little sister.
I honestly did not do any research on Spina Bifida. I did not really know how to use a computer and it did not come to my mind. I was too busy rushing around staying out of the way. But thinking about it now, I probably should have.
It is really hard to see my sister go through surgeries and to have to watch it happen. It breaks my heart. This January, when my sister was in the hospital, I didn't know what to do with myself. Should I feel sad? Surprised? Worried? Scared? All of these? I didn't know. But now I know. Even when she has surgeries or hospitalizations, or has Spina Bifida, I can believe one thing... actually two things. These two things I hold on to. Wherever I am, I take them with me.
The first is that I love my sister.
The second is that I won't ever let her go.
Thursday, June 23, 2011
Things have changed
I havent fallen off the face of the blogging world!! I promise I havent! : ) I'm just pregnant and well that is basically like falling off the face of the planet when its number four!!
Tonight I have a post on my heart that Ive wanted to share for at least a week now but just havent taken the time to set myself up emotionally to write it all out.
Warning: I have a feeling this post could be hard for mommies to read who arent "here" yet but I still thought it important to write because most likely who will be "here" at least in some way.
Toby is five now. Five is big stuff. Five has also become the age where Toby is now struggling. Struggling with things I didnt think we'd struggle with for at least another few years. Toby is struggling with being different. There have been times that I think my heart would just break into two with some of the things he says. But at the same time I'm so thankful he says them. So thankful that he trusts us as his mommy and daddy to share what is going on in his little heart. He asks the question of why? the horrible awful makes my insides squirm, "why" question. He asks why we dont have a shunt. Why we dont have braces? Why does he have to have a back brace? He asks if we ever had braces when we were little. And he cries. Alot of the time he asks those questions he cries. It all started with the back brace we recently got for scolosis. It was almost like a lightbulb went off in his little head and he thought, "hey this stinks and this isnt normal!" Part of me wanted to play tough mommy with him. His orthotist told him it was like his thor outfit. I told him he looked tough. He cried. I wanted to keep telling him how cool it was, how smokin awesome it looked. but you know what? it wasnt cool. it didnt look smokin awesome. it stunk!!! so instead of my usual ploy of how amazing something really is. I sat down in our entry way with him that night and I held him and we cried. I dont know if I will ever forget it as long as I live. My heart broke because I knew he was hurting and I knew he didnt really understand. But we just sat there and cried. I dont think a few months back I would have ever thought it okay to let him see me cry like that. I would have hid myself in my room after giving him the "this is cool" lame talk. But things change and that night we just cried. Nate sat with us and we talked and we let him know it was okay to cry. It was okay to be sad. And you know, it really was okay. I cant even write this without crying now. I guess its still a little too fresh. or maybe im a little too pregnant : ) But its still okay.
Anyway, I tell this story to say that yea, we are struggling a little over here. I feel like the words we share with him now will help shape the way he sees himself, his disability and God. Its a hard thing to explain to a 5 year old that the God who loves them and only wants good for them would allow this to happen. It's hard, but I know that its true. I am clinging to that truth every time we talk. I pray that the truth will ring so true in my life and heart that Toby will see it as just that. TRUTH. I do believe that God made Toby exactly the way Toby was meant to be. I do not believe Toby was an accident, a product of medication or lack of medication. Toby is Toby and every part of him is the way he was meant to be.
In a totally different tone. We did discover a great book that is lighthearted but really perfect for this time in his life. The other day he was starting to get upset about his back brace again and Gracie ran and got this book to read outloud. I love that she had the thought all on her own.
It's called It's okay to be Different. (you can click the name and it will bring you to the amazon website to order)
I love this book. The first time I heard it Toby was repeating the words to his speech therapist.
"It's okay to have wheels."
"It's okay to need help sometimes"
"Its okay to eat macarroni and cheese in the bath tub"
I teared up at least through the first 4 readings.
Its just a fun, sweet, not too heavy book on differences. I think its been helpful. Its even been a good conversation starter on how soooo many of us our different.
Well, I hope this post finds you well. I hope you know that even though we go through rough spots, hard times and dark storms. They pass, They always do. Then we come out on the otherside of it stronger and better for it.
Kari
Monday, June 13, 2011
Decisions, decisions
Summer has officially started, and we're officially in "countdown mode" with regard to Esther-Faith's kindergarten. Oh, we're not counting down the days until she goes to school, we're counting down the days until we have to make a final decision.
To make a long story short: Private school close to me with no services (PT, OT, Speech, adapted recreation, etc...) that is all day, every day and close enough that I could get to her every three hours to assist with cathing.
OR
Public school with services that only meets Monday, Wednesday, and every other Friday to which we would have to transport her but where she would have a nurse to help with cathing and then we have to find childcare for the other days of the week.
It is a HARD decision. And we can't seem to make up our minds. We've got our pros and cons for each. We've made our lists of "what-ifs." We've agonized over the whats and wherefores. And STILL, we can't decide.
I know, it's kindergarten. Except for our kids, it's more than just classes. The decisions go beyond what they'll learn to how they will learn it. Where will they have the least restrictive environment? Where will there be someone who knows the signs of shunt failure?
How do we decide?
If you've walked in these shoes, ANY advice you can give would be appreciated!
To make a long story short: Private school close to me with no services (PT, OT, Speech, adapted recreation, etc...) that is all day, every day and close enough that I could get to her every three hours to assist with cathing.
OR
Public school with services that only meets Monday, Wednesday, and every other Friday to which we would have to transport her but where she would have a nurse to help with cathing and then we have to find childcare for the other days of the week.
It is a HARD decision. And we can't seem to make up our minds. We've got our pros and cons for each. We've made our lists of "what-ifs." We've agonized over the whats and wherefores. And STILL, we can't decide.
I know, it's kindergarten. Except for our kids, it's more than just classes. The decisions go beyond what they'll learn to how they will learn it. Where will they have the least restrictive environment? Where will there be someone who knows the signs of shunt failure?
How do we decide?
If you've walked in these shoes, ANY advice you can give would be appreciated!
Monday, June 6, 2011
sailboat
It has been a while since I have posted anything on here but I intend to get back into doing so more often. Because of the long absence I suppose I should reintroduce myself. :) This is Karen Orr, Carson's mommy (Carsonscorner09.blogspot.com) We have recently added our second son, Silas, to the family. Everything is going fantastic and we are more than blessed. Yesterday, I heard an amazing sunday school lesson and I want to share it with you.
First the story was told of a man who fashioned himself an incredible sailboat to journey across the ocean. It was very large and beautiful for the eyes to see. The sails were magnificent. It was greatly admired and people were very complimentary to its appearance and grandeur. When it became time for the man to begin his journey many marveled and envied at the boat as it made its way out to sea. It was just so pretty and so perfect, they thought. Soon into the man's journey he came into a storm, and his boat was quickly turned upside down. In this position the hull was visible, and it was very obvious at this point why his boat could not withstand the storm. Although the sails were beautiful,and the boat was large, the hull was tiny and very poorly constructed. The man neglected the hull... nobody would see the hull, and therefore he regarded it as unimportant. He caused his own boat's failure.
Now the moral of this story. We are the boat. Our sails are what people see of us. How they see us. How we dress, do our hair, our make-up. It could be our nice homes or our nice cars. The sails are our material things. The hull, is our soul, our heart, our inner selves that are not visible to the eye. Nobody sees our hull, they see our sails. So, all too often we decorate our sails, we worry about our sails, and we spend our time and money to gain more material things so that we might be complimented. Of course the storm referenced in the story is none other than the storms we face in our lives, the harder times. Because I am posting this on a blog entitled Spina Bifida Kids I can safely and assuredly say that we all know what it is like to face a storm in life. But friend, I ask you, how is your hull doing? Are you spending any time investing in what will sustain you through the storms. When I heard the words, "It is Spina Bifida, a birth defect that will affect your child." It did not matter what I was wearing. My house, and my car could not carry me through the trial. My faith did, my God gave me strength and peace and comfort. He still does. It is our responsibility to build our boats, and ours alone. Will yours make it through?
This was a blessing and encouragement to me, I hope that it is likewise to you.
First the story was told of a man who fashioned himself an incredible sailboat to journey across the ocean. It was very large and beautiful for the eyes to see. The sails were magnificent. It was greatly admired and people were very complimentary to its appearance and grandeur. When it became time for the man to begin his journey many marveled and envied at the boat as it made its way out to sea. It was just so pretty and so perfect, they thought. Soon into the man's journey he came into a storm, and his boat was quickly turned upside down. In this position the hull was visible, and it was very obvious at this point why his boat could not withstand the storm. Although the sails were beautiful,and the boat was large, the hull was tiny and very poorly constructed. The man neglected the hull... nobody would see the hull, and therefore he regarded it as unimportant. He caused his own boat's failure.
Now the moral of this story. We are the boat. Our sails are what people see of us. How they see us. How we dress, do our hair, our make-up. It could be our nice homes or our nice cars. The sails are our material things. The hull, is our soul, our heart, our inner selves that are not visible to the eye. Nobody sees our hull, they see our sails. So, all too often we decorate our sails, we worry about our sails, and we spend our time and money to gain more material things so that we might be complimented. Of course the storm referenced in the story is none other than the storms we face in our lives, the harder times. Because I am posting this on a blog entitled Spina Bifida Kids I can safely and assuredly say that we all know what it is like to face a storm in life. But friend, I ask you, how is your hull doing? Are you spending any time investing in what will sustain you through the storms. When I heard the words, "It is Spina Bifida, a birth defect that will affect your child." It did not matter what I was wearing. My house, and my car could not carry me through the trial. My faith did, my God gave me strength and peace and comfort. He still does. It is our responsibility to build our boats, and ours alone. Will yours make it through?
This was a blessing and encouragement to me, I hope that it is likewise to you.
Tuesday, May 31, 2011
Anxiety and cheer
Worry weighs a person down;
an encouraging word cheers a person up.
Proverbs 12:25
Photo notes:
Sometimes, difficult moments turn into days.
And days into weeks.
And we start to feel the weight of the life we chose.
And then...
We find ourselves in the company of those who love us.
Very, very much.
And they understand.
Even when they don't.
And they listen. And reaffirm. And love.
Mostly, love.
That is where we found ourselves this weekend.
Difficult, heartbreaking decisions looming.
Disappointment weighing.
And the arms of our family encircling.
And it was amazing.
Tuesday, May 17, 2011
Catcher's Mitt 101
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| First, make sure you have the right attitude. |
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| Make sure you know how to use the glove. |
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| Forget the glove, I got this. |
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| Make sure you have a good partner. |
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| Hands out, ready to catch. |
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| Wait a minute. I don't need to see the ball coming at my face. |
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| I can totally catch it anyway. |
Tuesday, May 10, 2011
Dear Mommy....oh wait....
So i was all ready for my blog post. Pumped up in the car from a long camping trip with little sleep. My poor husband had to hear all about this blog post on the drive home.
He feels the need to indulge me sometimes when I need to vent.
So I was going to title this post,
Dear Mommy of a child without special needs,
the post would then continue with something all these lines.
But then I started thinking, MAN this post sort of reeks!! Reeks and drips of nasty old rotten bitterness and frustration, maybe even a little anger.
Sometimes facebook is a rough place for me. Sometimes its amazing. But sometimes its frustrating to see some of our kids go through such awfully hard things and see you mommys struggling through some really scary moments. And then see the status updates about potty training, or teething and oooooooh please pray for us this is so hard because baby so and so has a stuffy nose. I want to take some of your status updates about UTIs, ER visits, Surgeries, braces, and therapy and just post it on their walls.
But as I got ready to sit down and write this Dear mommy, bitterness post. (and after a nap) I really had to think about the truth behind what I wanted to write and why.
I can also be content knowing that their child is spared some of the things are children are not spared from.
But on the flip side. I know that my life with Toby has changed me. permantly. and in a good way. And on that same note though I dont want my life with Toby to change me to a bitter angry person at everyone who has a healthy child. Wow!! Talk about not being able to keep friendships! : ) Its something honestly, I give to God on a regular basis. Maybe I take it back since I have to keep on giving it over to him. But as long as I keep giving it to God as long as I keep fighting it and not just sit there and right mean ugly posts that might make me feel better at the moment....and then honestly, pretty junky afterward.
I hope these thoughts make sense to you, since sometimes I have a hard time putting my thoughts into a logical progression : )
Kari (aka toby's mommy)
He feels the need to indulge me sometimes when I need to vent.
So I was going to title this post,
Dear Mommy of a child without special needs,
the post would then continue with something all these lines.
You and your child will survive potty training because your child is physically able to go potty. It will not be the end of your world if it takes a while, even a long while.
You and your child will survive when your child is getting some new teeth. All kids do.
You and your child will survive if your child gets a skinned knee.
But then I started thinking, MAN this post sort of reeks!! Reeks and drips of nasty old rotten bitterness and frustration, maybe even a little anger.
Sometimes facebook is a rough place for me. Sometimes its amazing. But sometimes its frustrating to see some of our kids go through such awfully hard things and see you mommys struggling through some really scary moments. And then see the status updates about potty training, or teething and oooooooh please pray for us this is so hard because baby so and so has a stuffy nose. I want to take some of your status updates about UTIs, ER visits, Surgeries, braces, and therapy and just post it on their walls.
But as I got ready to sit down and write this Dear mommy, bitterness post. (and after a nap) I really had to think about the truth behind what I wanted to write and why.
Is it frustrating when friends, family, and people we really dont even know that well complain about things that seem so trivial? ABSOLUTELY! But is it trivial to them. At that moment of potty training, at that moment of endless crying because of new teeth or hearing a baby having a hard time breathing seem like something small? Not to that mommy. Its big! And you know, if I wasnt where I am today. That could be me.
I could be the mommy on facebook with the biggest worry being a scratch instead of scoliosis. I could be the mommy worried about teething instead of tethered chord. I could be the mommy scared about silly things instead of shunts.
And instead of feeling bitter and frustrated maybe I should sit back and be happy for them. Maybe I should be happy for me too.
I can be content knowing that they dont have to deal with the worries and fears we do. I can also be content knowing that their child is spared some of the things are children are not spared from.
But on the flip side. I know that my life with Toby has changed me. permantly. and in a good way. And on that same note though I dont want my life with Toby to change me to a bitter angry person at everyone who has a healthy child. Wow!! Talk about not being able to keep friendships! : ) Its something honestly, I give to God on a regular basis. Maybe I take it back since I have to keep on giving it over to him. But as long as I keep giving it to God as long as I keep fighting it and not just sit there and right mean ugly posts that might make me feel better at the moment....and then honestly, pretty junky afterward.
I hope these thoughts make sense to you, since sometimes I have a hard time putting my thoughts into a logical progression : )
Kari (aka toby's mommy)
Saturday, May 7, 2011
Happy Mother’s Day (from a special needs perspective) - By Misty Boyd
The following is reprinted with permission from the blog of Misty Boyd, "Broken Body/Whole Spirit."
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If I could be a little girl again and know the things I know now, I would thank my mom a lot more for the sacrifices she made for me when I was growing up. So, for Mother’s Day, I’ve decided to use what I know now to thank her and all the other spina bifida moms I know for things I wasn’t aware of then.
Mom,
Thank you for giving me life when “they” said I’d be better off dead. Thank you for fighting on my behalf when I was too little and weak. Thank you for loving me even though you were scared. Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been intimidating. Thank you for learning what all those tubes were for, and where they went, and how they helped me. Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go. Thank you for walking up and down the halls of the hospital with me while people gawked. Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once. Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t. Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk. Thank you for being patient when other kids my age were running circles around me. I needed more time. Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn. Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn). Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude. Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart. Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun! Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved. Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed. Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen. And thank you for forks! LOL! Only my mother will get that one! Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!
Love,
Your SB kid
SB moms…please know that your children feel this way, or at least they will when they look back on their lives and see all you’ve done for them. Take this letter as your own. I wrote it for all of you, from your babies who can’t tell you any of this yet. Happy Mother’s Day!
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If I could be a little girl again and know the things I know now, I would thank my mom a lot more for the sacrifices she made for me when I was growing up. So, for Mother’s Day, I’ve decided to use what I know now to thank her and all the other spina bifida moms I know for things I wasn’t aware of then.
Mom,
Thank you for giving me life when “they” said I’d be better off dead. Thank you for fighting on my behalf when I was too little and weak. Thank you for loving me even though you were scared. Thank you for becoming a nurse in our home long before you were ever a nurse at a hospital. I know that must have been intimidating. Thank you for learning what all those tubes were for, and where they went, and how they helped me. Thank you for countless doctor visits and E.R. visits, no matter what time I needed to go. Thank you for walking up and down the halls of the hospital with me while people gawked. Thank you for your paranoia about every little thing that didn’t seem right. I know sometimes you thought you looked nuts, but I’m sure it kept me alive more than once. Thank you for yelling at doctors when they said, “She’s fine,” when you knew me well enough to know I wasn’t. Thank you for the ugly stares you gave back to people when I was doing my best to learn to walk. Thank you for being patient when other kids my age were running circles around me. I needed more time. Thank you for remembering countless medications, and cath schedules, and putting my AFO’s on for me, and dressing me when it took me a little longer to learn. Thank you for yelling at me when I wouldn’t take care of myself as a teenager (not that it worked…I’m stubborn). Thank you for making me stubborn. I needed that attitude. I don’t know how I would have made it without my pain in the rear attitude. Thank you for pushing me to do everything you knew I could do, and I knew I couldn’t. Turns out, you’re pretty smart. Thank you for letting me do things you were scared of. I know I terrified you sometimes. I had to know if I could ride my bike down that hill at supersonic speed. I could. Fun! Thank you for making me know that I was worthy of love. I never let a boy tell me anything different. There were a lot of worms, but I dropped them all for something I knew I deserved. Thank you for cheering at my graduation. If my doctors had it their way, that day wouldn’t have come, but you believed. Thank you for spending countless hours planning that crazy wedding, yet another thing that wasn’t supposed to happen. And thank you for forks! LOL! Only my mother will get that one! Basically, thank you for stepping into an unfamiliar, scary world, that you didn’t sign up for. I appreciate it, and I think you did a great job! I turned out okay!
Love,
Your SB kid
SB moms…please know that your children feel this way, or at least they will when they look back on their lives and see all you’ve done for them. Take this letter as your own. I wrote it for all of you, from your babies who can’t tell you any of this yet. Happy Mother’s Day!
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