Milestone Moxie

Guest post by Cassie of Beyond Measure.

I follow a lot of blogs... I love reading about all of these other kids.... I love reading about their many victories. I pray for them when they are facing surgeries. I care about all of these kids and their entire families. Recently I have noticed that many of the moms out there are struggling. It seems like the moms that have the younger kiddos, under 2 years old, are struggling the most. It is to you that I am writing.

So many of you are hurting because your baby isn't sitting up yet, isn't crawling, won't roll over, can't stand up, and can't walk. You are frustrated. Beat down. Exhausted. Sad.

You feel like you are giving everything you have to help your child reach these milestones, but it's not working. Or maybe you are beating yourself up because you don't think you are doing enough. It's your fault.

I remember those days so well. I cry sometimes when I read your blogs and I hear the pain in your words. That pain is very familiar to me.

I had several friends that had babies right around the same time Caleb was born.

And I can vividly remember how different he was, even as an infant. Caleb struggled to keep his head centered, even when he was laying down, he would just look to the right or the left. He had to work so hard to keep his head straight.



I remember having a play date with some former co-workers and their babies could hold their heads in the center, but Caleb couldn't. Something so simple. My son couldn't do it. I remember leaving that same play date crying. And honestly I eventually stopped going to play dates altogether. I didn't want to be reminded of all that was different about Caleb.

So, getting Caleb to hold his head in the center became my priority.
That was the goal we would work on.

As an infant, Caleb did not move his legs at all. And I mean no movement. They just flopped out to the side like a frog.



I saw how other babies would constantly kick their legs and could even stand up a little when held. Not Caleb. No movement, no feeling, nothing. Just sweet little legs that flopped out to the sides.

That became my priority. I just wanted him to try and use his legs. That was the new goal.

Next was head control. I called Caleb "bobble head" because the boy could not hold up his head. It was just too heavy.



He required so much support. I just wanted him to be able to hold his head up.
That became my priority.

My goal for him.

He was probably 7 months old before he could hold his head steady.

We bought him an excersaucer but he was just too unstable in it so we had to wrap blankets all around him.



His PT had to make him a special seat to go in his high chair so that he would have more support when eating.



It felt like we were constantly having to do things, adapt things, to help Caleb.

Things that every other baby could do with such ease, was such a chore for my son. Everything was a reminder that he was different.

The next priority was rolling over. I worked and worked with him. Desperate for him to just roll over. Begging him too. Bribing him with toys just out of reach so that he would roll over to get them. Nothing. I was convinced that he would never roll over. While other babies his age were sitting up, crawling, and even standing...my baby couldn't even roll over. Caleb was 10 months old when he rolled over for the first time. It was to get a teddy bear that was out of reach. I cried. Rolling became his means of getting around for a long time. He would just roll across the living room to get to what he wanted. He found a way.



And then came the milestone that I thought would absolutely break me. Sitting. Caleb could not do it. I did everything the PT told me to do, I worked with him daily. I prayed and prayed. I asked family to pray. I was desperate for him to sit up. I remember calling my mom and just sobbing because I didn't understand why my one year old son could not sit up on his own. Caleb was about 15 months old before he could sit up well on his own.



With every milestone reached, there was another one that needed to be worked on.

For every mountain he climbed, there was another one waiting.

Each goal became my priority.

Each mountain became my focus.

I made myself a calendar that listed all the things that his PT wanted me to work on. I put the list on the fridge as a reminder of what I was supposed to be doing to help Caleb reach his goals...which were really my goals to begin with. I would highlight the things I worked on for that day. And I would beat myself up endlessly on the days that I didn't get to everything. I felt like a failure when I didn't work with him enough. I carried a heavy burden. Every day. Every time I went to the fridge, I saw that list, the things I was supposed to be doing. A constant reminder that I wasn't doing enough. I wasn't enough.

I think us moms are way to hard on ourselves. I know I am. This idea that we have to do it all, be it all, every single day. I think all moms carry that weight but us moms with special needs kiddos have additional weight to carry. We have to be caregiver, nurse, advocate, physical therapist, chef, maid, chauffeur, teacher, administrative assistant, mom, and wife. And that's just naming a few. We wear a lot of hats.

We have to be experts in UTI's, shunt failure signs, tethered cord symptoms, non-verbal learning disorders, and more. We fight for our kids. We argue with doctors who think they know more about our child than we do. We push therapists to get our child the braces and equipment they need. We deal with stares from strangers.

I hear how tired so many of you are. How sad you are. You love your child so much and your heart is breaking because he/she isn't walking. Or sitting up. Or talking. Or standing. Or whatever. It's always something. There is always something to work on, a goal to achieve, a milestone to reach. A mountain to climb. It's exhausting.

Caleb is 5 1/2 years old now. I've learned over the years that Caleb does things in his own time. He works hard and he does as much as his body will allow him to do. And I've seen him climb many mountains. I've seen him find a way. I've seen him succeed.





I've seen him find joy in mobility.

Something that many people would considered a burden, a hindrance, something that he is "bound" to, means freedom and independence to Caleb.



I've seen him do things we were told he wouldn't be able to do.



I've seen him do things I didn't think he would ever do. Like crawl on his hands and knees. He crawled on his belly until he was 3 1/2 years old. I had all but given up on him ever being able to get his knees up under him. But he did it, he got stronger, he figured it out. In his own time.



I've seen him graduate from HKAFO's to just AFO's.



And I have seen him walk. I have even seen him run.

I've seen him get stronger and stronger. I have seen him use legs that he can't feel.



And I have seen him redefine.

I don't have it all together, I still worry, I still beat myself up on occasion. As Caleb has started school, I have found new things to worry about. New goals to reach. But I'm learning to just appreciate all that he is and all that he has accomplished. My burdens aren't his to carry. He isn't sad, so why should I be? Caleb's a happy kid. He always has been.

Even when he couldn't hold up his head, he was still smiling.

Even when he couldn't sit up on his own, he was having fun rolling all over the place.

It didn't bother him that he crawled on his belly instead of his hands and knees, he still got to where he needed to go. Getting a wheelchair didn't make him sad. He loved it. It changed his life and his personality for the better.

So, to all of you moms out there that are just plain tired. Beat down. Sad. Defeated. Go look at your the precious child God has given you. We have beautiful, strong, resilient, determined kids. Our kids have and will achieve great things. Our kids may never blend in with the crowd, they may always stand out, but they will change this world and the people around them. They already have. There is great joy in that.

Don't let yourself drown in the milestones. Don't let each goal not yet reached consume you. Your little one will climb that mountain, just maybe not as fast as you would like. So, take the time to enjoy the scenic route up the mountain, and anticipate the beauty and the joy that awaits at the top.

Sweet Awareness

October is awareness month for a lot of things. For many moms, every day is awareness day. Here are a few things I've seen to help raise awareness.

I saw this on Parenting Special Needs' facebook page.

October is disability awareness month. Support our initiative to educate our communities about acceptance of people with Different Disabilities & Abilities.

Your Assignment:
♥ Start a Conversation ♥ Read a book to a group of children that emphasizes difference and fosters acceptance ♥ Share a personal story ♥ Pass on information about a disability ♥ Display our FREE poster ♥ Acceptance begins with a Smile : )

Rett Syndrome Awareness

from Brooklyn Ashleigh Butler...

Mitochondrial Disease Awareness

A touching post from Life With Jack...

A post about Mitochondrial Disease

and other awareness activities

by Mama Mia...

Spina Bifida Awareness

Faces of Spina Bifida

Daily photos & stories on the blog Beyond Measure....

Down syndrome Awareness

31 for 21 from Unringing the Bell

Daily posts from lots of blogs!

Grab This Button

Sweet message from Boston Clark Butler's blog

Dwarfism Awareness

Let us know if we're missing anything. Help spread awareness!

Awareness

(Inside Text..."Hope Your Holidays Are Special"

Nobody likes to be talked down to or treated like they are invisible, but it happens everyday
to people who have disabilities or use wheelchairs to get around. It is not typically done on purpose, but is often because of the lack of knowledge or lack of interaction with someone who has a disability. More often than not when you first meet a person who has an obvious disability, maybe they are in a wheelchair, or maybe they are blind or have vision impairments. You become a bit uncomfortable, you are not sure what to say. Sometimes pity, fear of the unknown, general awkwardness and a lack of understanding makes you shy away from being cordial.
One of the ways to get past the social awkwardness is to know how to act or what to do in an unfamiliar situation, so educating yourself and others about disability is very important. I think it should be started at a very young age. I wholeheartedly believe in inclusion.
Inclusion is part of a much larger picture than just placement in the regular class within school. It is being included in life and by using one’s abilities in day to day activities as a member of the community. Inclusion is being a part of what everyone else is, being welcomed and embraced as a member who belongs. Inclusion can occur in schools, churches, playgrounds, work and in recreation. It is my hope to see people like my beautiful granddaughter who lives with Cerebral Palsy be more accepted and understood by society. I think I speak for most people who are touched by someone with a disability, when we see things in stores, such as Barbie in a wheelchair, or the occasional book that explains to children that being a little different is o.k. that they are people who are accepted by others and they are people just like you, who have feelings just like you, and they have a purpose in life, just like you do. That is why I decided to design a couple of Christmas cards that show children enjoying themselves at Christmas time, opening gifts and helping to decorate the Christmas tree. It is my way of raising awareness and acceptance. If I can get these cards out for Christmas, people will send them across the miles to their family and loved ones embracing and accepting disabilities and soon, we will be spreading awareness all around the world!

If you are interested in these cards, please contact harrold.janet@gmail.com
Orders are being taken through October, cards printed on November 1st and in your home by Thanksgiving.

Sled Hockey!

I saw this post on the blog, Beyond Measure. Cassie gave permission for me to share this. Caleb has spina bifida, but that doesn't stop him from being a hockey player! If your child has core and upper body strength, sled hockey might be a fun activity to do with the whole family!

Thanks for letting us share this, Cassie!

Conductive Education

The Conductive Learning Center
Grand Rapids Michigan

Well friends, I have to say...The four week experience that we had at the CLC just may have changed our lives and our outlook on life forever! The people who work there are so dedicated and obviously devoted to the children who attend the center. Whether they are there for one session or if they are attending full time, the approach is the same and the goal is to promote independence. It concentrates on developing and improving gross motor skills such as learning how to sit, walk and hold on to large objects, as well as fine motor skills including learning how to hold a pencil and eat and drink. Many parents are surprised to see their child sitting on the potty for the first time.
The curriculum strategies are tailored to the needs and abilities of each student, many who have Cerebral Palsy, Spina Bifida and other Motor Challenges.
The Conductors are committed to teaching students to reach beyond what is expected. They include music and singing into a structured routine making it a fun and positive experience, so they can learn the necessary skills needed to live a more independent, confident and fulfilling life.
You can only imagine our excitement when they had Hailey up on a walker (with assistance of course) after only being there 3 days! We wholeheartedly agree with the program and want to see Hailey attending on a more regular basis. I’m not sure if that means moving to Michigan, or making the trip there more frequent. It is not even out of the question to open up a Center here in Massachusetts. Either way I have to get more aggressive in my fundraising efforts. Unfortunately Conductive Education is not covered by insurance.
Friendships are different now than they used to be, quality instead of quantity. The entire community welcomed us with open arms. The parents, the staff, and the program director were all helpful and inspirational. We felt a complete sense of belonging and unity. Families who understand, people who have never met us before opened their home and their hearts to us. It is the bond we share as families of children with special needs. Parents who have walked the road before us paved the way. The same families who have learned not to waste their precious time listening to rude comments, awkward stares and low expectations from Doctors.
To all of the Parents and Educators at The Conductive Learning Center in Michigan. I have just one thing to say. BRAVO BRAVISSIMO!

Hard Core Sitting

Blessings Beyond Measure

by Cassie from the blog Beyond Measure.


I was about 17 weeks pregnant when we found out that Caleb had Spina Bifida and Hydrocephalus. I remember sitting in this little office with Glenn and the "genetic counselor" came in with this book and she turned to the section on Spina Bifida and read to us. We were told terrifying things about our baby boy and of course we were offered termination (several times actually). That was never an option for us and I quickly switched doctors. I remember that day so well, like it was yesterday. I felt like my world was falling apart. I remember sitting on our couch, just sobbing and telling God that I couldn't do this, that is wasn't fair and that I didn't want this for my baby. I was mad at God for about a day and then I realized that I needed Him more than ever and that there was no way I could deal with this without Him. People always say that God never gives us more than we can handle, but I don't think that is true. I think we are often faced with situations or circumstances that we can't deal with, at least not without Him walking beside us and sometimes even carrying us through it.

Caleb was born on August 9th, 2005. I had a scheduled c-section so all the necessary medical professionals were ready to meet Caleb's needs. I didn't get to hold him, I only got to see him as they wheeled him by me. There is something so unnatural about that, not getting to touch this life that has been in you for 9 months.

This picture was taken right after Caleb was born, this was the very first time I saw him.

This is the opening in Caleb's back. Some babies with Spina Bifida have a sac that covers the opening but Caleb didn't have that. I was so glad that Glenn was there to get this picture, otherwise I never would have known what Caleb's back actually looked like.

Caleb had his back closure and shunt placement when he was only 6 hours old. Poor Glenn had to deal with that pretty much on his own because I was recovering from my c-section and pushing that morphine drip button every chance I could.

This is following Caleb's surgery. You can see how large his head was due to the hydrocephalus so the shunt placement was an absolute necessity.

Caleb's sweet little head after shunt placement. It was amazing how quickly the shunt worked, his head started getting smaller and smaller. Thank God for the man who invented the shunt!

I just think this picture is so sweet.

Caleb was in the NICU for 13 days. Probably the hardest 2 weeks of my life up to that point. Glenn and I would spend 7+ hours a day by his bed, talking to him and holding him.

Caleb smiling, he smiled all the time. I know everyone says it is just gas but I like to think he was just a happy guy!

I hated everything about him being in the NICU. I hated feeling like I had to ask permission to hold my own baby. It was a joyous day when we got to bring him home.

Finally home!

So that pretty much sums up the start of Caleb's journey. It is now a 5 year long journey and one that I feel so blessed to be a part of. We have certainly had many ups and downs. Spina Bifida is very complex and it affects so many aspects of Caleb's life, not just his mobility.

Caleb is now 5 years old and he started Kindergarten this fall. He is doing things we were told he would never do. He walks with AFO's and a walker. He also uses a wheelchair because his legs do get tired. He loves watching NASCAR and Monster Truck videos. He loves to color and write. He plays baseball through the Miracle League and he absolutely loves that. He is a wonderful big brother to Benjamin.




You can't help but smile looking at this boy. I have days of sadness, times when I feel sad for him. But then I remind myself that Caleb isn't sad. He's not unhappy at all. If he isn't sad, then why in the world should I be?



Caleb is absolutely amazing and an inspiration to me. I am in awe of all the things that he has accomplished. He absolutely blows me away and brings me so much joy. I thank God on a daily basis for blessing my life and trusting me and Glenn with Caleb. God must have seen something in me that I didn't see in myself because He knew that I could handle this (with His help of course). God gives me a peace that I wouldn't have otherwise. Our lives would be so different if Caleb didn't have Spina Bifida, I can't even imagine things any other way. I think about all the wonderful people I have met that I wouldn't know if it weren't for Caleb. My life has been touched by so many other moms that share the bond of having a child with SB. I don't walk this road alone and that makes all the difference.

Meet Isaiah

by Cristy of Random Thoughts

Thomas and I met in graduate school. Thomas had recently returned from a mission's trip to Siberia (yes, the really cold part of Russia; though it's actually quite warm in the summer time). He thought surely the greatest pick up line in the world was: "Hey, come with me to Siberia!" (just imagine this being said quite sarcastically)

We married December 27, 2003. Yes, my parents were thrilled with our marriage, even though it meant I, their only child, would eventually be living in Siberia. I do however, think that my mother would have preferred a different date, but the wedding was beautiful!

One year later

We visited Siberia together in February 2005, and we still believed God to be calling us to minister in Russia after our 3-week adventure.

At this point we both really wanted to have a baby, and in the summer of 2005 I found out I was indeed pregnant--great rejoicing! Other than being incredibly sick for a really long time, the pregnancy was fairly normal, I guess, until we discovered that Isaiah would be named Isaiah and not some girly name. On that day, which I recall being warm and sunny and maybe sometime in October, we also learned that Isaiah has spina bifida. There are many degrees of this birth defect, so for those of you medical buffs, his defect is between L2 and L3. His type is spina bifida manifesto, myelomeningocele in conjunction with hydrocephalus. And if you want more details, you can read here.

As you can imagine, our lives were a little uncertain at that point...NOT uncertain as to whether or not Isaiah should be born, that WAS NEVER a question! We believed then and still do now that Isaiah is our gift from God, and that God created him exactly the way that he should be. The way that our lives changed involved our calling to missions.

We weren't sure if we would be able to move to Siberia, since our child might have a disability.

Isaiah decided that he didn't want to wait for the day he was "supposed" to be born. He made his quite dramatic entrance on February 6, 2006. I won't go into all the details, but the day was difficult in many ways. After several hours I was finally able to see my precious boy, and loved him even more than I thought possible! After only 21 days in the hospital and 3 surgeries, we got to take him home.

Our first family photo

God did make it possible for us to move to Russia, though not Siberia. Isaiah has a shunt in his head to drain fluid that builds up. Should this shunt malfunction for any reason, he would need almost immediate attention to prevent any long-term damage. Unfortunately, such care is not available in Siberia, at least not that we have discovered at this point. So for now we are living in St. Petersburg as we learn this difficult language. For more about our ministry, please visit our website.



In the spring of 2009 God brought more opportunities of growth for our family. I had a miscarriage in March and again in May. We were of course devastated, but still believed that God would have us add to our family. I was able to have tests run to determine the possible causes of the miscarriages and now take medicine to help prevent any further harm to future children.

And, I suppose that I want to explain some of the pictures that you might see on my blog. Isaiah is a happy, wonderful, loving little man; but he does have some medical needs that most kids his age don't have. Isaiah cannot walk. He does an amazing "army crawl" all around the house (and in the sandbox when it's warm), that I could never manage. His defect effects his bladder and bowel; we are not sure how much feeling he has in these areas. We help him "potty" 4 times a day with a catheter and give him water enemas every other day. He's sitting on his own much better these days, even working with his hands some. During the summer/fall of 2009 we were in the States for 5 months. During that time Isaiah was able to have intensive physical, occupational and speech therapy. He was able to be fitted for full-leg braces and begin learning to walk with a walker! We praise God for this progress!

Also while we were in the States, God blessed us with our 4th child, who Lord willing, will be joining us in June 2010. We excitedly await the birth of Nadezhda "Nadia" Grace Slawson!

So those are the bare facts. If you would like to know more, please feel free to ask, anything. I'm used to explaining this all in Russian, now, so talking about it in English is a breeze!

Thanks for stopping by. I'd love to know who you are and visit your blog, too, if you have one. Please leave me a comment!

Spina Bifida Awareness

October is Spina Bifida Awareness Month

Spina bifida is a major birth defect of a baby's spine. It is one of the most common, permanently disabling birth defects in the United States.

Spina bifida occurs within the first few weeks of pregnancy, often before a woman knows she is pregnant. It happens when the spine and back bones do not close all the way. When this happens, the spinal cord and back bones do not form as they should. A sac of fluid comes through an opening in the baby's back. Much of the time, part of the spinal cord is in this sac and it is damaged. Most children born with spina bifida live full lives, though they often have lifelong disabilities and need many surgeries.

Some of the problems that a person born with spina bifida might face include:
• Not being able to move lower parts of their body. (Some might need to use crutches,
braces, or wheelchairs to get around.)
• Loss of bowel and bladder control. (Some might have to wear protective clothing. Others learn new ways to empty their bladders and bowels.)
• Fluid building up and putting pressure on the brain (hydrocephalus), which needs to be fixed with an operation.
• Learning disabilities.
• Allergy to latex (a created material found in some rubber-type products such as balloons
or hospital gloves).

All children born with spina bifida don't have the same needs. Some children have problems that are much more severe than others. Even so, with the right care, most of these children will grow up to lead full and productive lives.

Preventing Spina Bifida
Most, but not all, cases of spina bifida can be prevented. Folic acid is a B vitamin that the body needs to make healthy new cells. If a woman has enough folic acid in her body before and during pregnancy, her baby is less likely to have spina bifida or another defect of the brain or spine.
Women need to take folic acid every day, starting before they get pregnant. Every woman who could possibly get pregnant should take 400 micrograms (400 μg or 0.4 mg) of folic acid daily in a vitamin or in foods that have been enriched with folic acid.

Learn more about folic acid, how to get enough each day, and where to find free education materials at the CDC website.

Resources for Families and Individuals Affected by Spina Bifida

* National Resource Center, Spina Bifida Association
* Spina Bifida Association
* SBA Chapters, Spina Bifida Association

(Thank you, Kimberly, for sharing this with us!)

Make Your Day Monday: Dreams Do Come True!

To follow are TWO special stories about TWO special boys who had a dream and that dream came true!....


Ben


Thanks to Make-A-Wish and a VIP, Ben and his family got to enjoy a Saturday at the NH Speedway. They were lucky enough to be inside a suite, where it was quiet...and warm, with unlimited beverages and food. Ben LOVED watching the races...and the cool crashes.

Thanks for a great family day Make-A-Wish!


Tucker
(click Tucker's name to read his amazing kidz story)

Have you ever had one of those days that you keep thinking "this day is so amazing, it is like a dream"? Tucker's family lived it! Here is their story....

We were given tickets from Shriner's Hospital. We received these tickets because Tucker has been a patient at Shriner's. It was so incredibly amazing we will NEVER forget it!! ... We were so blessed to experience this amazing day!!

We had no idea just how good these seats were!! We thought we were getting some good seats in the grandstands or something. They escorted us to the pit area next to the track on the second floor up above. There were tables and chairs and lots of food!! Couldn't even believe it!! They had coloring books for the kids, m&m candies, goldfish, jelly beans, drinks and bubbles to blow. We were given VIP wristbands and pit passes to go anywhere we wanted and see anything we wanted at any time!!!

Joan our escort explained to us that this was a gift from the Austin Hatcher Foundation. It is a foundation for pediatric cancer. Founded by a pediatric spine surgeon who also was a father of a child who died from an aggressive form of cancer. His name was Austin Hatcher Osborn. They called him "Hatch." Their story is a hard one to read but helps you understand why this foundation is what it is!! The foundations goal is to support research towards the diagnoses, treatment and development of a cure for pediatric cancer and to provide support and hope to children and families undergoing treatment as well as to those who have lost children due to cancer. Take a minute and click on Hatch to read their story!! It is through their generosity that we were able to live this dream!!





It was really like we were living a dream!!! The boys can't stop telling everyone about their amazing day!!

Read more about Tucker's exciting day at his family's blog HERE!