It Might Be Hope

We have walked these halls many times and are so thankful for the amazing staff at Primary Children's Medical Center. Mercy River and KSL recently teamed up to make this new video. It was so close to my heart... 

It Might Be Hope
by Mercy River

You do your work the best that you can
you put one foot in front of the other
life comes in waves and makes its demands
you hold on as well as you’re able

You’ve been here for a long long time

Hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it’s been a while since I felt this
but it feels like it might be hope

It’s hard to recall what blew out the flame
it’s been dark since you can remember
you talk it all through to find it a name
as days go on by without number

You’ve been here for a long long time

Hope has a way of turning its face to you
just when you least expect it
you walk in a room
you look out a window
and something there leaves you breathless
you say to yourself
it’s been a while since I felt this
but it feels like it might be hope

Special and Determined

Jacob's birth story shared by his mom, Marla, of Special and Determined....

I was born March 22, 2006 at 1:32pm in Naperville, IL by cesarean section. I weighed 7 pounds, 12 ounces, and was 20 1/2 inches long. The picture above was my christening picture in the hospital before my shunt surgery (16 days old). I was born with a congenital heart defect called Tetralogy of Fallot, which is a congenital heart defect consisting of four different abnormalities.

Tetralogy of Fallot involves four heart defects: A large ventricular septal defect (VSD) - a hole in the septum between the heart’s two lower chambers Pulmonary stenosis - involves narrowing of the pulmonary valve and the passage from the right ventricle to the pulmonary artery Right ventricular hypertrophy - the muscle of the right ventricle is thicker than usual An overriding aorta - the aorta is located between the left and right ventricles, directly over the VSD. As a result, oxygen-poor blood from the right ventricle flows directly into the aorta instead of into the pulmonary artery

Before I was born, my Mommy and Daddy wanted desperately to have a baby. They went through a year of infertility treatments until it got to be too much for Mommy. One unexpected day after Mommy stopped treatments, she found out she was pregnant.

Mommy’s pregnancy was considered “high risk” because of her age. The obstetrician recommended a few tests to make sure all was okay with the pregnancy. Mommy had a Level 1 ultrasound which is also called a “screening ultrasound” to check that there is normal growth of the baby and to look at the location of the placenta and to be sure there is enough amniotic fluid. During the ultrasound the Perinatologist discovered a hole in my heart. He told mommy that there may be a possibility of Down Syndrome because of this, and asked if she wanted to have an amniocentesis to confirm.

Mommy didn’t know how to feel about all this information except scared and overwhelmed and she didn’t know how to tell Daddy. After Daddy and Mommy talked and determined that they were happy to be having a baby and whatever God blessed them with they would handle it with a loving and open heart, they decided against the amniocentesis, and just had my heart monitored over the next 5 months to see how it was growing.

Mommy did all the things that expectant moms do. Started buying clothes, got the nursery together, tried mommy yoga (that didn’t go over that well) and had a baby shower. She wasn’t going to let anything ruin the excitement she was feeling as an expectant mom, she had waited far too long to be a mommy.

My Birthday: Well it was the day for me to come into this world and everyone was anxiously awaiting my arrival. Mommy and Daddy got prepped to go into the surgery for my delivery.

And here I was blue, as was told to Mommy & Daddy by the Pediatric Cardiologist before I was born. Mommy was eagerly awaiting the scream, after a couple of seconds there it was. Daddy never told mommy until just recently that I wasn’t breathing when I came out.

I got to see Mommy for only a few seconds before they rushed me off to the NICU to evaluate me. After what seemed forever, the Neonatologist came to the recovery room to tell Mommy and Daddy of the heartbreaking news…I might have Down Syndrome, but it won’t be confirmed until the karotyping (test to identify and evaluate the size, shape, and number of chromosomes in a sample of body cells) blood test came back from the lab. However there were other characteristics that would give them an indication I had Down Syndrome. The Simian Crease on my left hand (The presence of a single transverse palmar crease can be, but is not always, a symptom associated with abnormal medical conditions, such as fetal alcohol syndrome, or with genetic chromosomal abnormalities, including Down syndrome (chromosome 21), and a large gap between the big toe and the toe next to it on both feet.

Mommy and Daddy were quiet they didn’t know how to react to the news. Mommy was thinking it was her fault because of her age and Daddy just didn’t say anything, except “I’m going to call everyone to tell them the news.” Then the nurse brought a picture of me to Mommy. Mommy’s eyes started tearing up, she could see it in my eyes that I had Down Syndrome. Her heart started breaking.

It seemed like forever since Mommy and Daddy saw me so they wheeled Mommy down to the NICU to see me. I was hooked up to monitors and had an air bubble over my head to help me breathe, but Mommy wanted to hold me.

After two weeks in the NICU and several issues with my oxygen levels falling too low, I was transferred to another hospital were it would be determined if I would need surgery.

I had a Blalok-Taussig shunt put in at 16 days old to help with the flow of blood, so I could get stronger to have my complete heart surgery (open heart) when I was 6 months old.

Well finally 3 weeks and one day after I was born I was able to go home. My parents were so excited to get home and start living our lives as a family.

As I was getting stronger Mommy arranged for early intervention to start. I had a physical therapist come to my house to help me start to get stronger and help me to reach my milestones. I was scheduled to have my complete heart repair at 6 months old and they needed me to be strong to go through this major surgery.

Mommy would sit in on my therapies with Darla the physical therapist to learn all that she could to help me get stronger and help me reach my milestones. This is mommy helping me to stand with the encouragement of my pray bear. She used the step stool since this would help me to learn to grab on to something and pull myself up. She was very creative in what she used to help me reach my goals.

You can read more about my first six months in my book “Jacob’s Journal – My Journey Home”.

Follow me and my growth as I am now almost 6 years old.

A Different Kind of Perfect

 

I read this book a few months ago.  Of all the special needs books of read that follow this pattern, this is my favorite.

A collection of stories and experiences gathered by mothers and fathers, I felt that the book was overall uplifting.  The stories are organized thematically, like many books similar to this.  What was unique was a small introduction to each chapter written by a professional (I believe psychologist).  He introduces the topic and how it applies to parents of special needs children.

Another book getting a lot of attention and positive reviews: Optimistic Parenting.

Another great book resource:  Explaining special needs to your child: 15 great children’s books from The Friendship Circle Blog.

In Memorium

In memory of all those special children who have passed on, some words for those who love them....

When you have someone you love in heaven, you have a little bit of heaven in your home.

 Tears are words the heart can't express.

 

Goodbyes are not forever.

Goodbyes are not the end.

They simply mean I'll miss you

Until we meet again.

We will never be the same as we were before this loss, but are ever so much better for having had something so great to lose.

Do not regret growing older.

It is a privilege denied to many.

Brick by Brick

I just heard this song, Brick by Brick by Bess Rogers. It made me think of all the little, almost unnoticeable, changes that our daily efforts produce for our special kids! Of course, this is the case with all children (and all adults, for that matter), but when other kiddos are reaching and surpassing milestones, we cherish and celebrate the "inchstones"! And, oh boy is it worth it!!! 

Three steps forward and two steps back we go, 

You try and push harder, they push right back, I know, 

That time moves fast and change moves painfully slow. 

It's hard to see the shift when you're so close. 

Brick by brick, we are building. 

You won't see for the longest time, 

We're building a new life. 

You plant a seed and wait for it to grow. 

They hate it now but they're too scared to know, 

That their children's children will sit underneath it's shade, 

And their children's children will bask in the love you made. 

Brick by brick, we are building. 

You won't see for the longest time, 

We're building a new life. 

It won't show for the longest time,

Little Bird

 

 I was listening to this song with a tender heart and it made me think of our sweet little ones. Thought I'd share :)

  

Band is on the run 

You're my little one 

Waiting in the wings 

So I whisper in your ear 

Let's get away from here

When the day is done 

I hear who'll wait 

Without some day 

Steady cause that day will come 

Now my little bird Get along 

You're the heart of these songs 

And when it rains so hard 

I let it open up the stars 

And you can climb All the trees 

Tell the world what you can see 

Cause you can see so far 

 I listen to all the very young 

Turn around they're gone 

Seems so suddenly 

And kindred hearts will never age 

The singer on this stage 

Wanting to go home 

I can hear that slow way 

Without sometime 

Following the things you've done 

But you know for now 

There's a scene that keeps bothering me 

When you're asleep at night 

And it's quiet and it's right 

And then you're grown 

And you're gone 

Like a bird from my arms 

And when I wake and see 

That you're down there fast asleep 

Now my little bird Get along 

You're the heart of these songs 

And when it rains so hard 

I let it open up the stars 

And you can climb 

All the trees 

Tell the world what you can see 

Cause you can see so far 

Now that's a way off 

It's like the summer's on the run 

It's like the rain keeps coming on 

But we're not there yet 

Cause you're fast asleep

 

Bamboo Brace

I got this email from Sue of Professional Therapies, oh, about two months ago. I finally got around to taking a peak at the information and was thrilled at what I found! Read this over and see if this might help your kiddo or any of your friends and spread the word!....

"My husband and I are both physical therapists with a pediatric practice in Salt Lake City. About 10 years ago my husband (who is NDT trained) felt there was a tool missing to help him treat children with cerebral palsy and over time (and many prototypes) we developed a pediatric elbow brace called The Bamboo Brace that we manufacture locally.

"Although we originally developed The Bamboo Brace for kids with spastic hemiplegia type CP we soon realized it's success in using it for children with Rett Syndrome, Brachial Plexus Injury, sensory disorders, global motor delays, etc. Our brace is unique because although it promotes extension at the elbow it comes with 5 different flexible and interchangeable stays that adjust to varying amounts of spasticity/instability depending on the individual child's needs. The above link will take you to our website for more details and information on how it works and who can benefit from using The Bamboo Brace."

About the Bamboo Brace

Bamboo Brace reviews

Bamboo Brace on facebook

Dad, Look What I Can Do!

I know it's unlikely that any of you haven't already seen this video, but I had to share it anyway. :)

"A boy with cerebral palsy was told he'd never walk, but did just that when he saw his returning Marine dad."

Peaceful Child

There have been so many successful and wonderful stories as a result of this blend of essential oils. There has even been a news story about it on MSN.

Peaceful Child Essential Oils Blend: Why.



Peaceful Child Essential Oils Blend: How.

Despite Our Differences

This video makes me happy.

To You

To all the amazing, lovely, intelligent, happy, beautiful, marvelous mothers who inspire me every single day! Thank you!!!

Bigger Than My Body

 

I've heard this song approximately one zillion times before, but the other day I heard it and thought of Chloe. My biggest fear is that people do not see her the way I see her. They see a frail body in a wheelchair and make assumptions about her ability to understand or her potential (or lack thereof). I think I might print these lyrics and hang them from the back of her wheelchair. Because my beautiful child is SO MUCH BIGGER than what most people can see!...

Someday I'll fly

Someday I'll soar

Someday I'll be so much more

Cause I'm bigger than my body gives me credit for

Bigger Than My Body by John Mayer

Good Ideas

How fabulous are these ideas!?! If you have any other ideas to share, please leave a comment!

An easy, low-priced way to isolate the index finger with iPad use.

Can I get a collective hallelujah!?!

DIY no sew floor pillow... Made just like the no sew blankets just in a circle and stuffed with polyfil.

DIY Shaking Bottle I-Spy Toy

O-Ball filled with shiny paper.... sensory heaven for grabby little fingers :)

Independent Living

 

I'm going through something that I know many of you have also faced: trying to get equipment covered through insurance. Ugh! I was expressing my frustrations to someone and was directed to the Utah Independent Living Center. I've only talked to them once and I feel like an incredible weight has been lifted from my shoulders! I explained which equipment pieces we are wanting for Chloe. They were eager to help me navigate the insurance appeal process and even offered some pieces of equipment to borrow until we get what we have requested from the insurance. And after I looked over their website, I realize they offer even more services.

Seriously, how have I not heard of this before!?!

I know what most of you are thinking. Well, great, but I don't live in Utah.

No worries, here are some great resources!!!....

Center for Independent Living : CIL provides services, support, and advocacy to enhance the rights and abilities of people with disabilities to actively participate in their communities and to live self-determined lives.

ILRU - Directory for Centers of Independent Living (just pick your state!)


NCIL - NCIL advances independent living and the rights of people with disabilities through consumer-driven advocacy. NCIL envisions a world in which people with disabilities are valued equally and participate fully.