Sunday, October 31, 2010


(*new version with added verse.)

During my pregnancy, I felt what I called "waves" of grief as I tried to wrap my mind around Brooklyn's condition. Sometimes I hoped so hard that the reality would creep up and smack me pretty hard...when I saw a child in a wheel chair or as I watched my other girls happily dancing around the room together. No matter how much time had lapsed, it still took me off guard.

It still does.

I often wonder if that is a sign of denial or if it is faith. I guess it's a fine line.

I have always considered myself a pretty logical person -- one part optimist; one part realist. I can handle my emotions and am pretty good at expressing them. I am definitely not one to bottle things up.

Well, this past week, I realized that I might not be as logical as I thought. Nope... it turns out I am human after all.

About a month ago, we met with Brooklyn's urologist, who confirmed that she was indeed eliminating completely and didn't need to be cathed. Hooray! BUT, her bladder was abnormal and borderline spastic, so she suggested a low-dose of Ditropan (Oxybutynin) to relax her bladder and perhaps elongate it a little. The hope was that this would give her a better chance at potty training some day. We didn't have to give her the meds, but it was a proactive measure that could help Brooklyn in the long run. We would have to start cathing her twice a day, but my husband and I agreed it was the right thing to do. It honestly didn't seem like such a big deal. Or so I thought.

At first, the excuses were easy. My husband had just had knee surgery, and I was running the house solo while also playing nurse. I didn't need one more thing to deal with, so I put it off...the meds and the cathing.

Then I finally got the prescription filled, but I forgot to ask for a syringe. And I somehow forgot the next 10 times I went to Target.

Finally, I remembered the syringe. But I still didn't give the meds or cath. And I was running out of excuses.

One night last week, Brooklyn was having a particularly fussy night, and my husband asked me if I had been giving her the meds and cathing her. "No," I said quietly.

He then suggested we cath her to see if that was the problem. I tell you that the second he cathed her, she stopped crying. Like instantly.

I looked up at my husband and the tears were starting to form. "I'm sorry," I whispered. One look at me, and my husband understood. He then offered to give Brooklyn her meds and cath before and after work until I was ready. I nodded in agreement, and he handed me Brooklyn and said perhaps I needed some alone time with her. I felt so weak. So ashamed.

As I held Brooklyn that night, I cried. A hard, grieving cry.

And then I prayed. I asked for forgiveness, but in all of his awesomeness, God didn't give me guilt. Instead, He gave me peace and grace and strength.

And you know what? The next morning, I cathed Brooklyn and gave her the medicine. I didn't like it, but I was at peace.

I know that this is not the last time I will grieve, but I also know now that it is okay to feel that way. In fact, it's normal., WE, are allowed to be human. It doesn't mean we don't love and accept our children for who they are; it just means that it is hard sometimes. It's also a reminder that we are ONLY human and that we can't possibly do this on our own strength.

*Nehemiah 8:10
"Do not grieve, for the joy of the LORD is your strength."

~Lisa (@ Heaven Sent)

Saturday, October 30, 2010

You know you've hit the big time when..

You know you've hit the big time when...


I have so enjoyed the text messages, emails, facebook notes, and babycenter posts that many of you have already received your shirts.
(hopefully the rest of you will receive yours monday or tuesday)

However, it hit me that it would be so much fun to SEE everyone in their shirts. Soooo.... Taadaaa
A flickr group was born.

This group is not just for shirts. Its for surgery sites, children's pictures, milestones, necklaces, anything and everything related to spina bifida. Post away!! It takes about 2.3 seconds to create a flickr account and then you can add in pictures and we can all comment!!
Pretty awesome if you ask me.
So the name of it is. The Journey: Redfining Spina Bifida
or here's what the URL looks like

Thank you all for your patience and understanding with the shirt process. It has been so much bigger than any of imagined and there have been some might bumps in the road, but hey its been great!!
Hope to see your pictures soon

a gentle reminder....

It has been a very hard week. My mind has been troubled with decisions I need to make in regards to my Madilyn. My thoughts have distracted me completely. I am sure I am the only Mom this happens to in the least that is how it seems sometimes.

Today I opened my mailbox and peace filled my heart when I opened a package. My "Redefining Spina Bifida" T-Shirt arrived. I quickly examined it and read the words on the back of the shirt.


As I looked at those words, I realized that I have been stuck in the FEAR Factor all week. I always try to live with Strength and Courage which in turn enables me to endure the trials that come from being a Mom with a child who has Spina Bifida. This week has not been that kind of week.

FEAR is a part of this journey. For me, it switches between the fear of the known and the unknown. There was a time when I thought this meant that my faith was just not sufficient enough. After 6 years on this journey, I think that I was wrong in that assumption. I am just human. I often find myself counseling my Father above instead of listening and learning his will. I think that he knows me well enough to allow me to fret around sometimes and then when I am ready to step past the fear, the rewards come after much patience on my part. Love, Trust and Hope have room to grow and flourish and sustain me.

The amazing aspect of being apart of this community is we each are at different places. When one is weak, another is strong. When one is afraid, another has calming words that lessons the fear. As this month of Spina Bifida Awareness comes to a close, I am grateful for the lessons I have learned from each of you.

Best Wishes,

Friday, October 29, 2010

A tiny glimpse

Sometimes I wish I had a glimpse into the future when I was pregnant with Toby.
Sometimes I am glad I didnt.
Sometimes I wish I could have sent myself now back to tell my pregnant self some things about how our life would be.
Sometimes I am glad I couldnt.

I dont think I could have been able to grasp the feeling of a doctor taking your baby out of your arms for a surgery.

I dont think I could have handled knowing the frustrations of people saying stupid things.

I wouldnt have been able to comprehend all then ends and outs of potty time at our house.

But you know what I wish I could have seen and could have known.

What it would feel like to see my child walk for the first time after 3 years of therapy.

What it would be like to watch my child laugh and play and learn just like any other kid.

What it would feel like to see my child get handed a trophy after playing tball.

I wish I could have had those glimpses. I wish I could have understood those parts. To see his face and to see all of our faces. The happiness. The joy and the amazement of what our lives have begun.

There are parts of my life with Toby that I'm glad I couldnt see and couldnt understand because I wouldnt have understood the parts of my life that make those hard parts so incredibly worth it.

Tuesday, October 26, 2010


You know how something happens to your car the month after you pay it off? Or you take the lasagna out of the oven just as the husband walks through the door to take you to dinner?

A couple of weeks ago, Esther-Faith started taking tentative steps with forearm crutches instead of her walker while the PT followed holding on to her waist. We really never thought she would get there. She HATED those forearm crutches for the longest time.

A couple of days later, we ordered her new KAFOs. They are coming with a removable waistband and twister cables. We'll put those on when she gets tired, but mostly, she'll use the KAFOs.

And then, she started walking with the crutches by herself. We were ECSTATIC! It was just a few steps at a time. Maybe across the room. And the walking was painfully slow. We bribed her.

And then last Sunday, she woke up and announced that she no longer needed her walker. She really wanted the "I'm walking with only crutches" dress that we bought, and she decided that Sunday was the day.

So, she walked with just the forearm crutches all day on Sunday. All over church. At home. Outside. Inside. All over. Sure, it was slow, but she was doing it--and it was her idea.

And that Sunday afternoon at her brother's soccer game, her braces broke. Literally broke in half.

And for the last week and a half, she's been rolling only.

Many times under duress. She isn't a big fan of rolling only. She wants her braces back. We pick the new ones up tomorrow.

I hope she doesn't forget how much she wanted to use those crutches!!

by Karin.
 (from the HennHouse)

Sunday, October 24, 2010

Worth Repeating

I'm sure most of us have read this before, but I know I NEEDED to read this today and God put it in my heart that some of you may need a reminder of His promises as well.

Read, reflect, and receive. I pray your heart is encouraged and your spirit refueled as you enter into this week!

~Lisa (@ Heaven Sent)

You say: "It's impossible"
God says: All things are possible (Luke 18:27)

You say: "I'm too tired"
God says: I will give you rest (Matthew 11:28-30)

You say: "Nobody really loves me"
God says: I love you (John 3:16 & John 3:34 )

You say: "I can't go on"
God says: My grace is sufficient (II Corinthians 12:9 & Psalm 91:15)

You say: "I can't figure things out"
God says: I will direct your steps (Proverbs 3:5-6)

You say: "I can't do it"
God says: You can do all things (Philippians 4:13)

You say: "I'm not able"
God says: I am able (II Corinthians 9:8)

You say: "It's not worth it"
God says: It will be worth it (Roman 8:28 )

You say: "I can't forgive myself"
God says: I Forgive you (I John 1:9 & Romans 8:1)

You say: "I can't manage"
God says: I will supply all your needs (Philippians 4:19)

You say: "I'm afraid"
God says: I have not given you a spirit of fear (II Timothy 1:7)

You say: "I'm always worried and frustrated"
God says: Cast all your cares on ME (I Peter 5:7)

You say: "I'm not smart enough"
God says: I give you wisdom (I Corinthians 1:30)

You say: "I feel all alone"
God says: I will never leave you or forsake you (Hebrews 13:5)

Saturday, October 23, 2010

Madilyn's Questions

Yesterday I had an interesting conversation with Madilyn that I wanted to share with each of you today. It was bath time. This is when the evening routine kicks in. We no longer...just take a bath. First on the list.....flush her bowels out through her MACE.

Madilyn proceeds to undress and turns and looks at me and says...."How long do I have to do this flushing stuff?" Of course I said, what do you mean? Her response was..."I mean when do I get to quit this stuff".

For a brief moment I stopped and looked at her sweet face. I caught myself before the tears started running down my face. Of course, she then said...."Are you about to cry Mom?".....ugh, NO! I told her this was just something she would do for a long, long time.

She then said..."So, are you telling me that when I am 103 I will still be flushing!".....All I could do was smile.

I just pushed the conversation aside until I was working in the middle of the night. Sometime around 3:00 am as I was on my run for work, out of the clear blue I started crying at the thought of what life will be like as she gets older. I have never allowed myself to go there before. It was so overwhelming that I pulled my car off the road to compose myself.

I had a real human Mommy moment. The kind of moment I keep from the rest of the world. Most people think I just have it all together and they call me supermom. But, this supermom has her moments. I realized that I can't answer all her questions. I have no idea what next week, month or year will bring us.Today, I ditched any plans of cleaning house and grocery shopping. Instead, the girls and I took a road trip into the GA Mountains and went to an Apple Orchard while the boys went to a college football game. We laughed and sang and looked at all the beautiful colors of the trees. We bought apples, apples, and more apples. We drank apple drinks and ate fried apple pies. Then we went to a pumpkin patch and found the best pumpkins ever and Madilyn rode a pony!
Today, we just lived. Lived in the place we are at this moment in time for Madilyn. We created our own normal complete with our emergency supplies and back up plans. What a day it was!

Thursday, October 21, 2010

The Victim Mentality

I was enjoying a talk with another mommy today. And we got on the subject of being a victim. (or at least acting like it) funny thing is we were talking about our children acting like a victim.

How easy is it for us to sometimes feel sorry for ourselves? Maybe we dont admit it outloud and maybe we dont admit it even internally easily. But sometimes we can play the victim.

Oh life is hard sometimes. We have therapy appointments, it takes extra thought and work to just about anything when you have a child with special needs. I recently went to the pumpkin patch with everyone and let me tell you we had a blast. The kids were good and they loved it. But if I'll be totally honest, I went home and pouted. I was the victim. Everything was harder for me. I had put Toby in and out of the stroller 50xs. I had to help him up about 25xs. I had to fix his arm crutches probably a 100xs and I was exhausted by the end of it. He got stuck on hay, had a hard time balancing and everything just took longer. I look over and see other people having their kids run around doing things easily, picking up their babies and laughing having a great time. Well I had a great time, but that great time was HARDER! I wanted to pout. And I did for a minute or two. : )

It's easy to play the victim when life is hard, legitimately hard. But what message am I sending to my son. Play the victim hon. Life is hard, lets be sad about our hard life. Lets just sit in all our gloom and misery and be sad. Blaaaaaaa!!! Bad mommy red flags popping up everywhere. That is not what I want to teach Toby. I want him to say, Look how awesome that pumpkin is. Look how great this maze is. Look at the animals. Look at anything and everything but himself!! I should have come home and said, Look how amazing, Yes I secretly packed his walker just in case the dirt and hay were too hard with the arm crutches, but hey I didnt even get it out of the car, I had great friends who ran after Milo while I helped Toby, We got to have an amazing time.

Anyway, I know we have all been focused on thankfulness for our children and been focused on the hope and joy and the amazing life we have. And we Do!! I do!! But I also want to keep the honesty, because some days are still hard. No matter how amazing, how much hope and how much joy. Sometimes we still have to fight the feelings of blaaaa and the feelings of being the victim. Really whose gonna want to be our friend if we dont fight it? : )


Wednesday, October 20, 2010

Journey to the 'BIG' Ultrasound

It's that time- a time of preparation for the 'BIG' mid-pregnancy ultrasound. If you are reading this right now, chances are you know exactly what I'm talking about:

It's the ultrasound that changed all of our lives forever.

If you can imagine, having lost our twin son, Eli, to multiple anomalies associated with his SB/Hydro (ultimately they diagnosed him after birth with Chiari 3 malformation, where they thought it was Chiari 2 in-utero), here we are scared lifeless. We have a healthy twin son, Walker, at home, the memories of Eli, the failed dream of our twin boys, a miracle pregnancy (without fertility drugs), and 2 lifeless parents who have dreaded the day of this upcoming appointment for a baby that we carry.

On August 7th of this year, we celebrated the Project E.L.I. Documentary Premiere (documentary on SB that was renamed after our son after his passing)(more on that soon), as the next day, August 8th marked the 1-year anniversary of our son's death. It was a weekend of highs and lows. I hadn't been feeling well for several days but blamed it on grief. I thought what I was feeling was grief. Boy was I in for quite the surprise.

But something miraculous happened that day as we locked ourselves in our home and turned off our phones. We took a pregnancy test with many doubts, considering our twins were invitro twins. But to our surprise, it was positive. We fell to the floor in disbelief that joy was being brought to us on the saddest day of our lives. The test the next day was positive, and the next day: positive, and even the next day: it was positive too (you get the point!)

Now, here we are: 15 weeks along. And we found out the news yesterday that we're having a baby girl, who we have chosen to name Ellie Reece McGinley. And our 'BIG' ultrasound has been scheduled in 3 weeks.
Dear SB Mommas-Please say a small prayer for our Ellie and this appointment. We are prepared for whatever God send our way, undoubtedly. Healthy, challenged, small, big, whatever she will be, we will love her and offer her the best that life has to offer. We have endured the death of our child once because of unexpected SB challenges. So if you can imagine, we have endured the worse. And there is a part of our hearts that will forever be a part of and longs to be a part of the SB community. November 9th will change our lives forever....again. And we look forward to a life with this child, no matter what.

Monday, October 18, 2010

SB Kids Worldwide Day of Prayer

So many good posts this month... So much anguish... SO MUCH LOVE...

And look what Colleen did:

From the site:

October is Spina Bifida Awareness Month, and we SB moms have on our minds, more than anything, the precious unborn babies who are so often terminated before they even have a chance to prove their lives have meaning and value to the world. 

To say that 50% of all Spina Bifida affected pregnancies are terminated is a conservative estimate. But we SB moms know there is no reason to terminate a baby because of SB. Our children are beautiful and intelligent gifts from God who have every opportunity to live full, productive, and totally normal yet extraordinary lives.

So we proclaim Wednesday, October 20 as the Spina Bifida Kids Worldwide Day of Prayer. We believe in the power of prayer, and we are excited at the prospect of many people praying at the same time for these unborn babies. We moms can make a difference individually and collectively, but that is nothing compared to the change that can come if we have God on our side.

Get more info here:

Sunday, October 17, 2010


For once, I have been at a loss for words.

I have been writing about our journey for the last 8 months and yet now -- during Spina Bifida Awareness month -- I haven't been able find the words. And until today, I didn't even know what I thought of all this "awareness."

I think part of it is that our family has just entered the journey and honestly, I kinda forget that we are a part of the SB community. Brooklyn is only 2 months old and in many ways, her care is just like any other infant. I guess we are in the "honeymoon stages" of SB, where there are many fears, but not quite as many challenges. There is a lot we still don't know, so we are still learning and growing.

But you -- so many of you -- you have found the words. Beautiful, beautiful words that absolutely ring true to my heart. I am in awe and totally honored to be a part of such a loving, faithful community. You have taught me why awareness is so important:

It brings hope.

It shows love.

It glorifies God.

It (hopefully) saves lives. Precious lives.

But the best part? Our children give us the opportunity -- the blessing! -- to share their stories and do these four things EVERY DAY. Yes, having a dedicated month is very cool, but what an honor it is that we have been gifted with a daily testimony of God's love and perfectly beautiful plan. As so many of you have stated: God doesn't make mistakes.

No, our children's diagnosis doesn't define them, but I truly believe I am changed for the better because of that diagnosis. And that is an amazing gift that I want to share.

God put it on my heart from the beginning to share our journey, and it seems He has done the same for many of you. This can't be a coincidence. I truly believe He wants to use our journeys for His glory. And I, for one, don't want to let Him down.

So keep sharing. Keep hoping. Keep loving. And keep glorifying.

If our Father can create bountiful blessings out of challenges we never saw coming, imagine what He can do when we are working together.

Lisa (@ Heaven Sent)

the dead horse just got deader : )

I know must of you are probably feel like we are beating a dead horse. So if so click off this page before the dead horse gets deader! : ) (i just want to state I know thats not a real word)

There have been so many beautiful, powerful blog posts as of late and I am so thankful for each and every one of them.

You, who are the writers behind them have more strength, more backbone and more courage than any other people I know. And you the readers I know echo most of the thoughts behind the writers.

So thank you! Thank you for being voices for your children, for our children and for the children to come.

Please take the time to read this post Its worth your time!

Oh yea and one more thing. Dont thank me for the new design!! Anyone guess whose blog it looks most like??? cause that's the mommy thats working on it for me


Saturday, October 16, 2010

The Spirit of Madilyn....

Let me share my thoughts with each of you on this somber evening. I have read your blogs and the post by Kari about a decision that another Mother is facing. I have felt all the frustration and sorrow and pain that you all have shared.

My situation was completely different when I was pregnant with our sweet Madilyn. For some unexplainable reason, other than a miracle, we had no idea that anything was wrong with our growing baby girl.

On March 26th 2004, I was taken into the OR for my third C-Section. As we entered that room I felt a strong presence there. It is almost hard to explain. The room was filled with light and warmth and peace. Stronger than I had ever felt before in my life. I knew that my Heavenly Father above was aware of me at that moment. I believe that angels were abiding with us that day.

Madilyn's entrance into the world was peaceful. Her sweet cry was beautiful. She was wrapped in the arms of love. Her spirit was so strong that it overwhelmed me. Tears flowed and I couldn't stop them. These were tears of joy. Joy at being blessed with the gift of Madilyn.

I was not prepared for what happened next. I had no time to think about it. I had to act and make decisions to keep Madilyn alive. As parents we became her biggest advocates. Her life was our responsibility. Our daughter was born with Spina Bifida that had not shown up on any ultrasounds or tests prior to her birth.

The odds were against us that day. But, I believed in the remarkable spirit of Madilyn. I also believed in my Father above and his plan for our family.

Today, Madilyn is a healthy and happy six year old. She completes our family. Spina Bifida does affect our daily life as in the routines we have. But, it does not define Madilyn. A few weeks ago she walked and ran 2 miles in a fun run at her school after she was confined to her wheelchair just a year earlier. Yes, her bowels don't work and we have a MACE to help them out, her bladder has to be cathed, she has developed Lymphedema in her right leg, she often brakes her right foot and has no idea how she has done it, she doesn't sleep well sometimes, she visits the hospital often and has lots of doctors who care for her. I could go on but I will stop there.

The flip side is she is brilliant. She has a smile that will melt your heart. She loves school and is doing well. She is challenged by handwriting and spelling but can read like a professional. She loves to play dress up and barbies. For Halloween, she is going to be a "Pirate" complete with a parrot to sit on her shoulder.

During this time of "Spina Bifida Awareness", I want people to be aware of what it means to me to be Madilyn's Mom. It means everything. She challenges me to live better each day. As a family...we laugh, we play, we cry sometimes but we live the best life possible!

Dont be discouraged

I know you all must disheartened like I am right now. I know most of us know about "the poll" and the woman behind the poll. What is the correct response? What are all the feelings we are going through seeing this in action? The internet is an incredible place, but it can be a place that bring heartache when we read stuff like this. Every time I hear that someone has voted TERMINATION my heart sinks and it feels as if someone is voting that Toby should have died rather than lived. My sweet and amazing Toby.Do not lose heart!!! We are making a difference!! We have our children and we are a living testimony to the beauty of LIFE!! I'll be honest I was so discouraged. What's the use of these shirts. What's the use of a painting I'm working on and then my husband sat me down last night and gently reminded me of the 678 shirts we have sold to help support Spina Bifida awareness and support the lives these children live!! Do not be discouraged!!! Keep praying!!

Selina wrote this on fb the other day and I asked if I could repost it because I loved it so much.

What does it mean to be perfect? Is there really such a thing as perfection? One person's perfection could be entierly different than another. I am haunted by the knowledge that there are babies, just my like mine, who are being terminated because of these so called imperfections. Who are we to decide what is perfect and what isn't? I know I'm not perfect. I don't usually get on my soapbox about these things...mostly because I've been there, and I know what a gut-wrenching thing it is to recieve a poor prenatal diagnoses...So I do not judge. But, today I have to say something...

Last night I came across a blog of a woman I have recently reached out to. She is pregnant with a baby who has recently been diagnosed with SB. The post I saw last night made me sick to my stomach. She has set up an online poll, for anyone to help decide her baby's fate. Anyone at all. People are right now voting on whether she should terminate this little life...This little life just like Maddie. Does that make anyone else sick? I will not post her link, because I don't want to encourage any other activity on her site. But my heart is breaking...So I ask...What is, perfection? Are we ever guaranteed a fairy tale ending? I'm pretty sure the answer is No. But who's to say that the fairy tale ending isn't found in life's imperfections? I know, with certainty, that my life is richer because I have a special little girl...She's a rockstar. And she makes me believe anything is possible. I see perfection every time I look at her. Ten perfect tiny figers, with ten perfect tiny toes...A smile that lights up a room, and a giggle that makes you forget whatever you were doing and join in....Perfection. It's the same perfection I see in Mason. They are my babies, and they are perfect.

I remember being in that scary place...Being forced to think about our "options." I have never had a moments regret in the choice that I made. And though I know everyone deals differently, I find it so offensive that such a personal decision is being made so public...and being so carelessly regarded. I truly believe that God does not make mistakes, and He never gives us more than we can handle. Life is what we make it, and perfection is really just a matter of perspective. I know my perspective has changed...and all for the better. Ten fingers. Ten toes. One heartbeat. One life that I cannot live without...perfection.

ps please check out this amazing post from Jet's mommy. Worth your time!!

Thursday, October 14, 2010

"The Special Mother"

The Special Mother by Erma Bombeck

Did you ever wonder how mothers of disabled children were chosen?

Somehow I visualize God hovering over the earth selecting his instruments of propagation with great care and deliberation. As He observes, He instructs His angels to make notes in a giant ledger.

"This one gets a daughter. The Patron saint will be Cecelia"

"This one gets twins. The Patron saint will be Matthew"

"This one gets a son. The Patron saint give her Gerard. He's used to profanity"

Finally He passes a name to an angel and smiles. "Give her a disabled child".

The angel is curious. "Why this one God? She's so happy."

"Exactly," smiles God. "Could I give a disabled child to a mother who does not know laughter? That would be cruel!"

"But has she patience?" asks the angel.

"I don't want her to have too much patience or she will drown in a sea of sorrow and despair. Once the shock and resentment wears off, she'll handle it. I watched her today, she has that feeling of self and independence that is so necessary in a mother. You see, the child I'm going to give her has his own world. She has to make him live in her world and that's not going to be easy."

"But Lord, I don't think she even believes in you."

God smiles, "No matter, I can fix that. This one is perfect - she has just enough selfishness."

The angel gasps - "Selfishness? is that a virtue?"

God nods. "If she can't separate herself from the child occasionally she won't survive. Yes here is a woman whom I will bless with a child less than perfect. She doesn't realize it yet, but she is to be envied. She will never take for granted a 'spoken word'. She will never consider any 'step' ordinary. When her child says "Momma" for the first time she will be present at a miracle and will know it. I will permit her to see clearly the things I see...ignorance, cruelty and prejudice...and allow her to rise above them. She will never be alone. I will be at her side every minute of every day of her life because she is doing my work as surely as if she is here by my side."

"And what about her Patron saint?" asks the angel, his pen poised in mid air.

God smiles "A mirror will suffice.

Tuesday, October 12, 2010

I loved this post over at Miss Madi's Journey. Pleaese check it out!! Totally Worth it!

Click here!!


Monday, October 11, 2010

Spina Bifida University

(From a publication of the SBA)

"Launching in October 2010, SBU will offer both pre-recorded and live seminars with medical and health care professionals from around the country--all on the topics that are important to you and all at NO COST!"

October 11: Urology
  • Management of the Neurogenic Bladder: Late Childhood to Adulthood
  • Evolution and Management of the Neurogenic Bowel in Spina Bifida

October 18: Aging with Spina Bifida
  • Aging and Adulthood
  • Managing Changes in Later Adulthood

October 25: General Health and Preventative Medicine
  • Proper seating and wheelchair fitting for persons with Spina Bifida
  • Latex Allergy: 2010 Update
  • SOS: Save Our Skin!
  • Motion Analysis for Patient Evaluation and Decision Making

Live sessions will begin in November 2010.
Visit and click the SBU box on the home page for more information.

(The following information is from an email received Monday, October 11, 2010, 9 a.m.)

Did you hear about SB University (SBU)? SBA’s new online educational platform launched last week. SBU offers both live and archived seminars on topics related to Spina Bifida. These can vary from health related seminars with medical professionals to employment or education tips from subject matter experts. The goal is to increase education about topics related to Spina Bifida that are important to our Community.
Sessions are FREE to registered users. Log onto to to register and become a part of a new online learning experience.

NEW this Week – Sessions on Urologic and Bowel Function:

Medical Management of the Neurogenic Bladder: Late Childhood to Adult
Presenters: Rosalia Misseri, MD and Hadley Wood, MD
This session discusses transitional urology, a sub-specialty of urology which focuses on congenital anomalies, and the impact of changes in the bladder on a person (both urological and sexual). Based on issues instead of age, the presenter explains how and when to transition care. The goal of transitional urology is to preserve kidney function while encouraging one to take responsibility for one’s own care as he/she moves into adulthood. The presenter also explains how to use social support systems to navigate the sub-specialties of health care and find the right doctors, the issues to be dealt with during the initial visit, and long-term concerns.

Evaluation and Management of the Neurogenic Bowel in Spina Bifida
Presenter: Kimberly Jarczyk, MSN, APNP
This session aims to illustrate how fecal incontinence can negatively impact health and the quality of life for people with Spina Bifida. During this session, the mechanisms of bowel incontinence and treatment options are described as well as the clinical concerns of poor bowel management. The anatomy of a normal and a neurogenic bowel is explained particularly as it relates to dysfunction as it pertains to lesions above and below T12. The link between constipation, the major problem in bowel incontinence, and bladder function, shunt malfunction, school and social problems, family discord, and financial burdens are also explored.

Sunday, October 10, 2010

Sunday I got home from church and got on the Spina Bifda Kids site and was going through everyone blogs. I landed on Colleen's blog and as I really look up to her and all she has been able to accomplish with Nate I was interested to read what she had to say.

So I started reading and I started feeling sick to my stomach. I'm super sick to my stomach at this point. Oh no she hates our shirts!! Oh no She hates spina bifida awareness! She thinks they are pointless! Oh no!! aaaaaaaaa. But wait. Deep Breath....I kept reading.

Thank goodness I kept reading. :)

Her post was great. It was perfect. I loved it! I think it rings so true! I loved all the pictures at the end. I wanted to put an extra link on here because I want every pregnant mommy whose child has sb to read this!

so click here for the post.

ps she didnt hate our shirts. you'll have to read it to see what I mean! : )Colleen you had me worried for a minute there!

Glimpses of the Future

Our little Brooklyn has her second surgery coming up this Wednesday. It is a simple outpatient tendon surgery, but I still hate that she has to "go under" again at a mere 2 months of age.

Brooklyn was born with two clubbed feet, a dislocated hip, and legs that we lovingly called "twisty, twisty." So far, she has responded wonderfully to the casting. Her hips are now in the correct position (although one is still dislocated), and her knees have moved into position and are now bending. Her feet are coming along, although some early pressure sores and swelling meant we had to take it slow. The good news is that this surgery means we are nearing the end!

Interestingly enough, my husband had knee surgery a few weeks ago, so he has been on crutches. He's getting frustrated about not being able to get around, and I've witnessed him struggling to do everyday things he used to take for granted...carrying a glass of juice or grabbing something from the other side of the room. I've watched him scoot himself across the floor and find creative ways to get himself ready in the morning.

The other day I admitted to him how much it hurt me to see him struggle, but what hurt me more is knowing that our Brooklyn may some day struggle like that on a daily basis. He admitted that he had been thinking the same thing.

Isn't that just God's perfect timing? It stung a little bit to envision our daughter not being able to do everyday tasks with ease, but it also gave us a chance to think about all the things that she might be able to do! That is why we are going through this casting process and giving her this surgery. We want to give her every chance at an independent life. This makes the anxiety of the surgery and the frustration of the weekly casting so much easier to handle...remembering that it is getting our baby's legs ready for all the walking we hope she'll be doing some day! :)

Sure, we have no idea what the future will hold -- and odds are it will be filled with some struggles -- but I feel confident that God will guide us to the right doctors, therapists, and opportunities to give Brooklyn the best future possible. Or better yet, the future He planned for her all along.

Lisa (@ Heaven Sent)

*The Ten Commandments for Parents of Handicapped Children*

I wanted to share something with all of you that I found at this website: Spina Bifida Support. I have this printed out and up on our fridge as a daily reminder!!

1. Take one day at a time, and take that day positively. You don't have control over the future, but you do have control over today.

2. Never underestimate your child's potential. Allow him, encourage him, expect him to develop to the best of his abilities.

3. Find and allow positive mentors: parents and professionals who can share with you their experience, advice, and support.

4. Provide and be involved with the most appropriate educational and learning environments for your child from infancy on.

5. Keep in mind the feelings and needs of your spouse and your other children. Remind them that this child does not get more of your love just because he gets more of your time.

6. Answer only to your conscience: then you'll be able to answer to your child. You need not justify your actions to your friends or the public.

7. Be honest with your feelings. You can't be a super-parent 24hours a day. Allow yourself jealousy, anger, pity, frustration, and depression in small amounts when ever necessary.

8. Be kind to yourself. Don't focus continually on what needs to be done. Remember to look at what you have accomplished.

9. Stop and smell the roses. Take advantage of the fact that you have gained a special appreciation for the little miracles in life that others take for granted.

10. Keep and use a sense of humor. Cracking up with laughter can keep you from cracking up from stress.

Saturday, October 9, 2010

The Natural History of Spina Bifida

According to the CDC little is known about what life is like for children who have Spina Bifida and their families. The National Spina Bifida Program housed at the Centers for Disease Control and Prevention (CDC) is sponsoring a pilot program to gain this insightful information. The goals of this project are learn about development, health, learning, medical problems, physical activity, services available, mobility and functioning among children with Spina Bifida.

What an exciting project! I hope that this will be one of those things that help change the attitudes and perspective of life with Spina Bifida.

Just wanted to share this with you all! I am continually inspired by your experiences and efforts to "Redefine Spina Bifida"! Each of our experiences are unique. During this month of "Awareness" may each of us find courage in our journeys. May we find ways to renew our strength and determination to give our children the best of care. Then may we hold up our light and offer hope to those families who find themselves on our path.

Best Wishes,
Madilyn's Mom

Thursday, October 7, 2010

Hello Everyone!!

I just wanted to take the time to introduce myself and my family!! My name is Tiffany. I am 24 years old and a stay at home of two boys: Alex who is 4 years old and Logan who turns 2 on October 17th!! I have been married to my husband, Adam for 4.5 years. We live in Oklahoma. Logan is our child with Spina Bifida. He has SB: Myelomeningocele, his level is L5/S1. He has a VP shunt, Chiari II Malformation, is currently cathed 3 times a day. He's had 6 surgeries so far -4 major, 2 minor. He has PT twice a month and will soon be starting OT. And, Logan also has Asthma and G.E.R.D. But, despite all of that he is one of the happiest little guys I know! :-)

Feel free to stop on by my blog!

Wednesday, October 6, 2010

Introduction: Always a SB Momma

If we were all sitting in a circle and asked to introduce ourselves, mine would go like this:

Hi, my name is Jodie. I am a 27 year old Momma of twin boys, well, a twin boy. And we have one on the way. I love my husband, family, church, marshmallow creme, embroidery, volunteering as a Donate Life advocate. And...I love my other twin son, Eli, who gave me a true purpose in life.

You see, I knew I had a purpose in life. I've known for a long time that it would come and my life would be complete. But I didn't plan on the type of road we had to travel to get there. Actually, no one does. It's not wanted and its not one anyone seeks to travel. After 2 miscarriages, fertility testing with no apparent answer, numerous failed fertility treatments, our final and most aggressive fertility treatment, Invitro-fertilization, was successful. A few weeks later, we found 2 beating hearts on the ultrasound screen. Early complications that 1st trimester gave us an un-ending amount of miscarriage stress. At 14 weeks of pregnancy, we were given a 50/50 chance of the twins survival (one twin was much smaller than the other). And by 20 weeks, twin A had been diagnosed with Spina Bifida, twin B healthy.

Our lives made a drastic turn that day. What seemed important at the time wasn't all that important after all. All thoughts were directed at this completely different life we were about to embark on. As a special education teacher, one of my 'pets' at the day rehabilitation clinic I worked at was a little boy with SB. So at the point of diagnosis, I immediately thought of him and a peace ran over my heart. I was in love with this little boy. I knew the joys a child with this diagnosis could bring. I was ok. My husband and parents, on the other hand, took it much harder. But the days there forward brought an ease to our hearts. And we began to plan for the arrival of our complete opposite twin boys.

August 3rd, 2009 brought us to labor and delivery at 36 weeks gestation. I was dilating and most of all, Twin A (Eli) failed a non-stress test. So our high risk OB sent us straight there. We delivered a 6 lb (Eli) and 5 lb (Walker) baby boys. Eli was immediately transported to Arkansas Children's Hospital which was right across the interstate from where we were at University of Arkansas for Medical Sciences. This was all in the plans from the earlier meeting with ACH's SB Team so we had months of preparing our hearts for his immediate departure. He was tested, observed, and MRI'd. All I was able to get as I laid in recovery across the interstate for the next 2 days were pictures and updates via telephone and relatives. And at one point, they put Eli on a 'teleconference' type setup so I could see him live.

But things didn't end up as planned.

Our dreams and hopes that we had for Eli were not to be. And that was apparent when we were told that MRI results determined the hydrocephalus was so bad, that it had pushed his brain growth backwards (MRI picture showed a 'rim' of a brain). They hydro was also causing his brain to herniate downwards into his neck. He also had a cyst on his brain stem that had not been seen before, meaning that he would live on a ventilator for the rest of his life. The mylo was so large and so high that he would never be able to walk or stand. He would be a vegetable for the remainder of his days.

It just wasn't supposed to be this way....

Jesse and I immediately knew what we had to do. We had then requested for Eli to be an organ donor and we scheduled to take him off of life support the next evening. Eli lived 31 hours past the point of removal, which was enough time to have him transported back to UAMS to spend his final hours in our arms beside his twin brother.

Eli was a part of a SB documentary here in Arkansas and after his passing, the SB documentary was then renamed after him: Project E.L.I.: Every Life Inspires (which will be on the web in a few weeks. I will blog that address for you all to see as soon as its ready.) This documentary was created by a former well-known news anchor here in Arkansas by the name of Julie Mayberry. She has an 8 year old daughter born with SB. Her dream was to provide a DVD to every OB/GYN in the state to hand out to a newly diagnosed parent as an encouragement to them before they made a choice to terminate the pregnancy because of the diagnosis.

And some of you may recognize our logo thanks to Kari: Team Eli. We are raising money for a resource center here in Arkansas designed especially for the special needs community of children to learn how to dance (no matter the disability or wheelchair or walker), learn how to sing, music lessons, art lessons, etc.. We are passionate about equal opportunities for these children.

Our effort in sharing our story is let everyone know that there is hope for anyone who has walked that mile. And if our story is confirmation for any of you that sometimes far worse things can happen than just a diagnosis. We are a reminder to not take things for granted and to kiss your babies daily. And each of us SB parents and family members are here to move that mountain with society.

You see, we had a dream for our twin boys. We were going to make it work. God had other plans for Eli's life. We now call him 'lifesaver'.

It is quite the honor to be a part of this group. Thanks for your readings, your writings, your encouragements, and your friendships.
Jodie McGinley

Tuesday, October 5, 2010


The ordering is now open for redefine Spina Bifida shirts desgined by Andy Gibbs.
Run on over to to order yours now. Ordering will only be open 1 week. October 13,2010
Please blog this, link this, fb this, tweet this. I am only doing one order!! If we get a ton of orders we will be able to make a small donation to the Spina Bifida Assocation!! Even more exciting. So the more the better!!


Okay ladies, here's the deal.
2 things.

1. TEAM ELI shirts. LAST DAY TO ORDER!! So get those in NOW!! Jodie is putting in the order tomorrow.

2. SB shirts designed by Mr. Andy Gibbs himself.(still working the front) We are looking at about 12.00 - 13.00 a shirt for adults and childrens. This WILL INCLUDE SHIPPING!! Lots of little fees add up. Envelopes, pay pal, shipping, taxes, screens made for adults and children. Hope this all makes sense to you. Anyway if you are interested. (this is not an order) Please leave a comment using ONE WAY ONLY!!

Comment on my status update on FACEBOOK leaving the number of shirts you want to order.

Comment here leaving the number of shirts you want to order.


Comment on Babycenter new thread title. Getting the count for shirts.

please please please only do this on one of these. If you leave multiple comments it will mess with my numbers.

Ask around family and friends if they are interested as well. I would like to do only one order. Two at the most.

Starting tomorrow morning I will have the paypal button added on to

Thanks for your interest and excitement.

Remember this is not an order. This is just a count for me to give the company a basic idea.

Monday, October 4, 2010

Awareness month

October is Spina Bifida Awareness month...

We kicked the month off by going to our local association's Walk, Run, and Roll. I think I would love to visit every race held all over country someday. So many of our friends who were first-timers at the race commented on what a family atmosphere it was. I typically run, but my mother-in-love was able to walk the whole 5K this year, so I wanted to walk with her.

My Tim ran, though. He finished in 25 minutes flat. But in distributing our seven numbers, he wore my mine. So he was the third place female finisher.

I've already read some incredible posts about awareness. And you know, there are some amazing kids, teens, and grownups with Spina Bifida who warrant year-round featuring.

Cassie is featuring a different child each day on her blog.

Jessica wrote about living with and preventing Spina Bifida.

Sarah showed us just how beautiful Spina Bifida is.

Nellie's Mama wrote about the blessings and challenges.

Gretchen shared about the practical and often cumbersome aspects of sending a child to school with extra supplies.

Joanna--in addition to some absolutely beautiful photos of Jet--wrote about awareness, acceptance, amazing grace, absolute love, and awesomeness.

And Nicole wrote about the importance of folic acid.

Are you doing anything to commemorate Spina Bifida Awareness Month? Writing a special post on your blog? Putting the ribbon on your Facebook profile? Showing off your beautiful child? Leave a comment and I'll add a link to your post in this blog post.

By Karin (from the HennHouse)

Sunday, October 3, 2010

Under Control

I admit that I have control issues. I always have. I like to be in control...A LOT. But we all know that in reality, there is very little we have control over. God has taught me this lesson with every one of my children...again and again and again. And I'm still learning.

When we first found out about Brooklyn's SB, it was easy for me to hand over control to God. I was only 18 weeks pregnant, and there was literally nothing I could do. There was so much we didn't know. During those long 5 months, there was such an enormous peace in knowing that He was taking care of my baby. That He knew EXACTLY what plans He had for her. Sure, I still worried, but honestly, I really trusted that He would do his God-thing, and I would accept whatever it was that He decided. It was all on Him.

Then our sweet baby was born. And then the real worrying began. It started out slowly when we were in the hospital and picked up when we got home. When she was in my care 24-7. Somehow, that made me feel like I was in control. And I was scared to death.

Because Brooklyn is not shunted, there were symptoms I had to look for...fussiness, swallowing issues, and excessive sleepiness were a few. I watched her closely. Her head was growing larger every day, and she was fussy. She spit up a lot and slept a lot more than my other two children. Suddenly I felt like a first-time Mom all over again. I didn't know if she was just being Brooklyn or if she was being Brooklyn with SB. Needless to say, by the time clinic day came around, I was driving there in tears with an extremely heavy heart. I needed reassurance that my baby was okay, and that I wasn't missing something.

A few weeks ago, I was having an especially emotional morning, and I felt lead to call my Mom. As we talked, she gently told me that I was forgetting who was in control. Of course, I've heard that phrase a million times before, but this time, it was exactly what God wanted me to hear: Yes, He was in control when Brooklyn was being formed, but He is still in control now. I just need to continue to trust Him.

You see, once Brooklyn was in my arms, I felt totally responsible for her...for her health...for her life. And that is such a very heavy burden to carry. But to know -- and trust -- that God would reveal any true "symptoms" to me, to our specialists, was such a HUGE COMFORT.

He is in control. What an amazing promise to all of us, but especially to those of us who have children with SB. Every day is different in our world. One day, a victory; the next day, a set-back. One specialist gives us great news; another tells us some not-so-good news. It's exhausting.

We need to remember that He is in control. For ourselves, for our babies, for our families.

Life is too short to spend it worrying. Find peace in our God -- our shepherd. He's got it under control.

Lisa (@ Heaven Sent)

Friday, October 1, 2010

Happy Happy Happy

Happy Spina Bifida Awareness Month!!

Dont forget to add a cute little yellow ribbon to your facebook profile picture!

Also, if you are on the Babycenter community group I posted over there about possibly doing shirts for all of us moms, aunts, uncles, dads and cousins. We have certainly become quite the group over here and over there. (many in BOTH)

So make sure to pop over to the Babycenter group to read about the idea for all of us to design a shirt for Spina Bifida awareness month. And to comment. Id like at least 20 shirts to make it worth the order and everything.

Love all of you. You have made my life richer just by knowing you through this silly computer.