Birthday eve

I'll be honest with you- Today was a bad day. A very bad day.

Today is the day before Carson turns 2.

The day started out badly and just got worse. Silas was sick, and fussy. Carson entered the scene fussy. Both only wanted to be held and both would not allow me any moment of rest.  Tantrums began after lunch and continued until the evening. I think that all in all there were about 10. It was bad.

As hard as I tried I just couldnt get myself to not be upset. And it wasnt even that I was so upset with Carson. I was furious today at a condition that we like to call SB. Spina bifida was my nemesis today. Now let me say that praise the Lord we didnt deal with any spina bifida problems today... per say. I think that I figured out Carson's grumpiness during one of his tantrums. He had his mouth open wide enough for me to catch the glimpse of molars. Me hating teeth is a whole nother post. They are awful too, but today my heart just hurt and it hurt deep because of spina bifida.

I want so badly to say that I have overcome this trial. That I am better than it. I want to tell you that it's fine... I know that the Lord is in control. I know that this is all a part of His great plan in our lives. I know that. And I know God is good. He has been so good to us through this trial. I know that these yucky tears and fears will not last long. They will quickly and soon be forgotten and we will move on.

On one hand I am so excited that Carson is turning two. This next stage (minus the terrible tantrums) has me so excited. There is more interaction, and more communication. Carson lately has been singing, and dancing. He chats with me although I don't quite get it. We read together, play together, he tickles me, he gives me hugs, he drives, :) he bats a ball, he races a car, flys a plane, colors. There's so much that he can do  now that he could not do just a year ago. I looked through pictures of this year- WOW. He has turned into a little boy.... sometime around the end of summer it just happened- BAM. I saw baby then boy emerge.

Today I kept thinking and hurting though. Spina Bifida.... Do you have to be here?? Why are you here? How do I get you leave?? Leave us alone and never come back. I don't really like you. As Carson gets older I have more fears about you. More unanswered questions, and I can't help but cry. I found out what you were just over two years ago, and I'm learning more and more that we are better than you. We can overcome you, and we don't have to be sad about you. I just want you to "take that" and take a hike. Can you?

This is my baby

Well my boy...

Tomorrow he turns 2

And we are going to celebrate!!! We are going to party!

He is so wonderful to me. So perfect and so amazing. He has made my life more joyful, and more meaningful. He makes me laugh harder than anyone.  He hugs me, and wraps his arms around my actual heart. I can't get enough of him, and I can't think of anyone that I am more proud of. He is strong, just ask him and he will flex and so you those giant muscles. Take that Spina Bifida.

You thought you had us here

But we have got you here

and here

and here

I could go on and on. I've got over 8,000 pictures of this boy, and millions and millions of blessings to count. Happy almost birthday sugar. I love you soooooo very much!

The end of awareness???

We have come to the end of October. This is now November. National Spina Bifida awareness is over....

However, every day I am made aware of spina bifida....

Every day something reminds me of how real it is...

Some days that may mean that personally we fight it...

Some days sweet friends of mine fight it...

Some days we just cry...

Some days we rejoice...

Every day is a new day, and every day brings it's own trials, and triumphs.

Please continue to spread awareness... Please continue to remember us... Pray for us.

I have many more ideas that I did not get to squeeze into my series last month dedicated to awareness.I even still have a few more cuties to feature.

So Let's keep it going.....

Trick or Treat

 Tonight was our first time taking Carson out trick-or- treating. It was so much fun and he was just too adorable. He was even saying trick or treat as he realized that doing so meant candy! So starting tomorrow I will hide behind the door with a bucket of candy and teach him to say Mama- then shower him with candy... :) worth a try, right? He was the best dressed costume out there tonight. I'm so proud of him!  Happy Trick or treat everyone!!!

Let's go Let's go

Ya, I could do this all night....

enjoying the goods

Spina Bifida awareness- What I know now.

I was asked a series of questions - Well honestly I was grilled--- by a friend of mine who wanted to put together a Spina Bifida post for her blog. Here is our interview..... 

How far into your pregnancy were you when the doctor informed you there was a problem with Carson?    

 ----  32 weeks

Did he actually say there was a problem, or just indicate a need for further testing on your baby and what was your initial reaction to this?

 ---My Ob detected what he thought to be a cyst on myself- possibly a ovarian or uterine cyst. He said those are fairly routine but I can’t rule out for certain that the cyst is not on the baby so I am going to send you for further testing. 

 

What was your immediate reaction to being told Carson has Spina Bifida?

---- shocked, scared, sad, mad, hurt, confused, couldn’t breathe.

Do you recall if you noticed, at the time, what your husbands’ reaction was?

----Pretty much the same as mine.

I know you did internet research into Spina Bifida after learning Carson has it.  What was your emotional state as you learned what it was and what it could entail for him?

----Some info, helped me relax while other info scared me for. It was a Russian roulette game with info.

I know you’re both Christians, do you feel your relationship with God was affected by these circumstances that were occurring at the time? 

-----I would say that I’ve realized more how much He is in control and not me.

What about your marriage relationship, how was it affected at the time?

---- we have a very strong relationship and this really didn’t seem to help/hinder. We just stuck together, leaned on each other, cried together, prayed together, but also laughed together and focused on what really mattered.

I know when Carson was born, they insisted on a C-Section birth in order to reduce as much trauma to his little body and spine as possible, were you able to see him immediately after his birth? 

---- It was about an hour after his birth before I was able to see him. He went straight to the NICU and I was transported to recovery. I did’nt think I would get to see him till the next day since he was to be transported immediately to Childrens… I had to stay at Hollywood Pres. for 24 hours and recover. However, while I was in the recovery room I overheard the nurses talking. One nurse kept asking about moving me out into my room … she said I was ready and they needed the spot in the recovery for another patient. This other nurse adamantly told her that I was not moving anywhere till I got to see my baby. He was on his way to see me and if we were waiting. I quickly called out to her and ask if I had heard her correctly. She said, oh honey yes, you are gonna see your baby. I squealed!!!! Sure enough about 30 mins later they wheeled him into the room. He was in a transport incubator. I cried with joy. He was so perfect. They let me reach my hand into the hole and touch him. I just stroked his face over and over and prayed for him. They stayed for probably five minutes then he had to transfer. It was amazing!!!!

Do you recall your emotional state at that particular time?

-----overwhelmed…. so many emotions I can’t even explain it. Joy, wonder, anticipation, fear, love, exhaustion,….

 Did you, at any time immediately after his birth, consider all the things you and your new family would be facing in dealing with Carson’s Spina Bifida?  Can you tell us some of what was going through your mind at the time?

-----Not really. His birth and seeing him made me just want to see him more, hold him, and take him home. I was worried about him in some ways but also just felt a perfect peace that God was taking care of him.

I know that there have been some physical difficulties for Carson, he had a broken leg immediately at birth and it’s broken a couple of times since then.  How fragile are his bones at this time?  Is he able to bear weight on them, yet?

---- His bones are fragile, how fragile is unknown exactly but we have to be very careful. Weight- bearing actually strengthens the bones so we currently do about 30 mins 3 times a week in a mobile stander. The more the better!!!! This is why we need to get his braces so badly. He needs more standing time, but currently he requires a supine stander in order to do that. We cant afford to purchase one so I have to take him to therapy and do that, and that’s limited for time.

How much time do you have to spend on a daily basis to work on Carson’s physical therapy; getting him to get up on his knees, working on his crawling, whatever other exercises the therapists have given you for him.  And, how much more difficult is this when you have another son who’s 6 months old and probably beginning to think about mobility, himself?

---- this is hard to answer. Each day is different… Part of that is having a 6 month old, and part of that is just daily schedule. Also some days Carson seems willing to work and other days he just doesn’t. I’ve learned when to push him and when not to push him. pick my battles- I guess. I’d say on average we spend 1-2 hours a day on physical  therapy activities.

 
Give me your best piece of advice for women facing the birth of a “disabled” child and name three web-sites you think would be good places for them to go for support and/or information.

----It’s gonna be fine. Your baby is a precious, amazing, and special gift. There’s nothing that is going to change that. Love is not based upon physical expectation. Do not grieve or fear, just trust in the Lord and His plan. Don’t lose sight of the great blessings you  do have. Cherish them, and search for everyday wonders, and miracles.

---- As far as websites go it would depend upon your unique situation. There are online support groups for everything now of days. I recommend finding friends who understand your situation… it’s been one of my biggest blessings and comforts.

Try babycenter.com, facebook, or Parents.com.

Spina Bifida awareness- faces

                                                                 Greyson - 2-1/2 years old

funny

loving

smart

curious

determined

adorable

mischievous...(notice the SITTING on the walker...not cool Grey) :)  

This little boy has touched my heart in so many ways. He is amazing!!!! He is also adorable! I've seen him in person on two occasions. Both times I wanted to just squeeze him, pinch him, tickle him... I was so overwhelmed with awe. I felt like I was in the presence of a celebrity. This is Greyson- the grey. I was nervous around him. :) Poor guy just thought I was crazy. I am crazy.... Crazy over how wonderful he is. One of the very first spina bifida kids I ever met was Greyson. He was just a few months old at the time. I fell in love with him. He brought me so much peace and so much comfort. I thought wow- he's adorable. Spina Bifida is not so bad.... this baby is perfect. Bob and I spent hours and hours reading the blog and looking at their sweet pictures. Greyson also has brought me so so much hope. He and Carson are fairly similar in their Spina Bifida diagnosis. I have seen this little man accomplish things that I know are supposed to impossible. Look at him in this picture!!!!!! I watch him- slightly stalk him- and smile with pride. He's Carson's role model... Carson just doesn't understand that yet. :) 

Tonight I also want to feature another cutie... This is a pretty new cutie.

                   Meet Gage- he is happy, very social, and a total flirt :)  

    He is almost 5 months old, and is currently in excellent health! Gage had his closure and shunt surgeries after birth and has since had 2 revisions. 3rd shunt is a charm!! He has ACII which is showing mild symptoms, but they are currently under control. He is cathed twice a day, and VCUG results showed we can likely stop after next uro check up. 
He is a very social baby with lots of smiles and the most contagious laugh. He is a favorite among nurses at the children's hospital and can light up any room. He likes to flirt and make his presence known. He rolled over for the first time yesterday, which marked his first real milestone (almost right on time!) He works really hard and we can't wait to watch him grow and achieve future milestones. We love him to pieces :)

This little guy just melts my heart.... what a chunk of cuteness right? He's only a little guy but he has already had some "Take That Spina Bifida moments" I look forward to seeing what he's gonna do this year! In my opinion he's unstoppable! 

These are the last two kiddos that I have for my faces of spina bifida.... If I missed your child please email me. I'd love to feature more. Scasmflip@hotmail.com

Spina Bifida awareness

He's so silly and loves to make you laugh

We are coming to the close of our spina bifida awareness project. Just a few days left ( but these next few days will hold some pretty cool suprises- so keep looking here. ) It is my hope that you now realize a little more about what spina bifida is to us, what it means, and how it affects us. I hope that I have answered some questions and helped to better inform you. I feel that the best way to redefine spina bifida is to let people know what it really is.... The truth about it. It is a condition that has affected Carson's body. It does mean that we see more doctors, have therapy, and need to do some adaptations.  BUT to me, to us as a family,  Spina Bifida is merely just part of our life. It's not the biggest part in any way... just a sidenote. It is my greatest hope that we might have a part in helping others who also journey down our road. I want to be a blessing and an encouragement. I want them to know that they are not alone and that joy really is a part of our journey.Our day to day is completely average and we are regular joes. This last week we went to see Disney on Ice, made a trip to the pumpkin patch, made cupcakes, watched Thomas and Mickey Mouse way too much, played ball, did laundry, changed diapers, brushed our teeth, .... you know normal things. lol. Our life did change completely when we had a child join us.... COMPLETELY. And when we were told that Carson had spina bifida I grieved as if I had lost him. It affected me in a way that is really hard to explain, but I thought I was losing my dream to have a child, and do all those things that you do with children.... I was so wrong.

Always grinning

And eating

Very much a boy

Loves boy things- Cars, trains, balls, remote controls.

He's very Mischievous too.

Pretty stinkin cute though. :)

A ladies man......  The boy has girlfriends lined up...... ps. also notice the food in his mouth and reference earlier picture (always eating)

 

 

And a adventure :)

If I could go back to diagnosis day and be able to know what I know now- see this little boy smile, hear his laugh, watch him grow, and hold him close..... I never would have worried or doubted. I never would have grieved losing him. Him being diagnosed with spina bifida is not a loss of anything. He is everything and so much more that I dreamed of... He's amazing! He teaches me what life really is, and what really matters. He makes me thankful, so thankful for things that I never even thought of. Things I would have otherwise taken for granted. I love him.... He's my miracle.

Spina Bifida awareness- The most important one.

I have not posted in a few days.... Our household has been sick.  I did not want to miss this one though. If there is any thing that I would like to encourage you to do for those of us on the journey with spina bifida it is to pray for us. There are so many miracles that we see through the power of prayer. Our God is so good, and so faithful. Please join us!!! Wherever you are please join us. I believe that as a collective group our prayer time will be 12:00 Pacific time but It might be Eastern time. :) either way please pray!!! When you get a chance take some time and specifically pray.

We proclaim October 24 as the 2011 Spina Bifida Day of Prayer. October is Spina Bifida Awareness Month, and there is much to pray for in the Spina Bifida community. Please pass this on to your Facebook friends, church groups, prayer circles, coworkers, families, and anyone who believes in the power of prayer


Let us pray together. Here are a few suggestions for your prayers:

1. Awareness. Spina Bifida is the most common permanently disabling birth defect in the United States, yet no one knows what it is. (What is Spina Bifida? http://kidshealth.org/parent/system/ill/spina_bifida.html) We pray for the Spina Bifida Association and its chapters to create a unified and effective message of hope and help. And we pray that society would see people with Spina Bifida and other disabilities as valued citizens.

2. The medical community. We pray that the medical community would understand the birth defect and its related issues. We pray that obstetricians would be educated about Spina Bifida and will give expectant parents the diagnosis accurately and compassionately. We pray for continued research and medical advancements to improve the lives of children and adults with Spina Bifida, to find ways of preventing Spina Bifida, and to find a cure.

3. The parents. We pray for the parents who find out their unborn child has Spina Bifida, that you would give them hope and peace beyond all understanding to make the decision to give life. (64% of pregnancies affected by Spina Bifida are terminated.) We pray for the parents who watch their children (young and old) struggle with the challenges of Spina Bifida, that they would be given the strength they need to get through each day and the wisdom to raise their children as you want them to be raised.

4. Children and adults with Spina Bifida. We pray that you would make them lights in a dark world, to be instruments of your divine purpose and will. We pray for their physical wellness, but also for them to use the challenges you gave them to bring you glory.

 

I'd like to add a few more specific prayer requests for our family.


1. Pray for Carson's body. Each day I ask the Lord that He would protect his body and heal his body. I ask that the Lord would strengthen his legs and heal his legs.... Increase his function and use. 


2. Pray for Carson's spirit. I also pray that Carson would have a sweet, and Godly spirit. I pray that the Lord would work in and through Him for His glory. I pray that Carson would grow into a Godly young man who seeks to serve and please the Lord in his life. 


3. Pray for Carson's care... There are so many decisions that we make on a daily basis in regards to Carson's therapy, or medical care. Please pray that we would have wisdom to make the right and best decisions.
 

"Again I say unto you, That if two of you shall agree on earth as touching any thing that they shall ask, it shall be done for them of my Father which is in heaven For where two or three are gathered together in my name, there am I in the midst of them. " - Matthew 18:19-20