Monday, February 28

Mama tells the whole story

Oct. 2006

I had a blog when I was pregnant with Wyatt.
It was an empty blog - no pictures, no emotion, no color, no meat...
simply updates.
I don't even know how to find it now.
I was freaked out of my mind during the pregnancy,
yet I just couldn't bring
myself to share my raw self with the world wide web.
wanted to talk & share & cry!
But I was afraid of being judged.
Like I had done something wrong to my unborn baby.
Or that people would think I was an ungrateful whiner.
Or admitting that my perfect little life actually had a flaw in it.
And that I would seem like a bad mama for having such
negative feelings about this new challenge.
I felt so incredibly alone.
And while I had an amazing support system from family & friends,
none of them knew my agony.
And that's ok. I don't think I was ready to spill guts then.
But I'm ready now.

It really is a beautiful story.........
July 2008
I was 22 weeks pregnant when we went into our ultrasound, that day way back in January 2006, so happy & eager to see our growing baby. My husband & I were so thrilled when the ultrasound tech said, "It's a boy." A boy! Oh, how fun! A little brother for our daughter, Mia! To think of all the cookies and parties and outings we'll have together!!!

The gal took all the measurements and pictures and we just watched quietly, so thankful to be having a baby boy. At the end of the ultrasound, she says, "Now, I found something. The brain ventricles are enlarged."

HUH? What?!!! That's not how this is supposed to go! And just like that, my world changed. Life seemed to stop and even disappear. My heart sunk as she told us she couldn't give us any further information. We would have to wait to see a specialist the next day. I faked a smile as we all went out for donuts to celebrate our boy.

July 2008

It was a dreaded wait until we saw the perinatologist. I prayed and prayed that it would not be so. Please, let everything be healthy and fine! I don't want to be one of those moms. I don't want to have a child with special needs. I just want to have parties and bake cookies and go to the park with my perfect little children!

But the doctor indeed did confirm that the brain ventricles were enlarged.....but what does this mean? It could mean so many different things, he told us, so there was no way to tell us what the outcome would be. The baby may not even live to b
irth. But of COURSE we'd keep the baby. No matter what, we would keep the baby that God intended to send to our family. However, my heartache grew. How do I wait out 4 more months of pregnancy not knowing???!!

July 2009

I had faith that God's will was more important than my own. Even if it was going to be hard and not in my own original plans. I prayed that whatever happened, I would have peace. Faith is what held me together. And my rock of a husband, our sweet daughter, and lots of support from family & friends.

May 2009

We went back for many ultrasounds, each one continuing to show growing ventricles. I always secretly hoped that things would have reversed themselves each time we went back. But no. The doctor said that it appeared that the baby possibly could have Hydrocephalus, meaning there was a blockage somewhere in the brain causing excessive fluid to accumulate, and that shortly after delivery, the baby would need to have a shunt placed to drain the fluid. Because of this, we would be delivering at a hospital that was right next door to the Children's Hospital, where they could do this surgery.

The fear of the unknown got to me at times. But I received priesthood blessings of comfort and assurance that all would be well with our son. Brian, my husband, was so completely calm and supportive, he comforted me (and still does) many a many a many a time! We believed that God would show us miracles - maybe not in the way of miraculously having a "normal" baby, but that all would be well and His will, and that we would be HAPPY. Things changed. I started looking at life differently and noticing what was really important. Earlier challenges seemed so trivial now. I had my faith in God, my family, and an active baby boy growing inside of me.

April 2006

I was grateful for each kick & bump I felt the baby make, as well as the bond that mama and baby were creating. I wrote a special song and sang it to him often. Pregnancy is so amazing.

As if there wasn't enough anxiety going on with the pregnancy, I discovered that I was leaking fluid at 29 weeks pregnant. After a life-flight to the hospital and all that drama, I was put on bed rest (at home) for 7 weeks. I was induced at 38 weeks and it's a good thing 'cause the guy weighed 8 lbs at birth.

Wyatt Joseph on his BIRTHday
May 19, 2006

What a sweetie of a lad! So cute and "normal" looking. Surely there is nothing wrong with my boy! He is perfect! All appeared to be in order so I got to take him with me into my recovery room. Yay, no brain surgery!

But just a couple of hours after delivery, I noticed his blue hands and lips. In the nurses rush and whisk him away......and then begins the quest of finding out what is up! His oxygen saturation levels were low as well as his body temperature. An ultrasound of the head showed Lobar Holoprosencephaly (which we later found out was MIS-diagnosed).

He also had an MRI done and it was discovered that his optic nerves were small and the Septum Pallucidum in the brain was completely missing, meaning Septo-optic Dysplasia. He may possibly have vision problems, they said, as well as a strew of other things that will need to be checked on a regular basis. It was also discovered that he was partially missing the Corpus Callosum of the brain, which is called Agenesis of the Corpus Callosum. Oh, wow, all these terms. How will I ever figure all this stuff out?

Bugg spent an entire week in this isolette. I could only take him out for feedings. He had to maintain his body temp and learn to breathe without needing oxygen. The Hunk & I were so blessed to have a room at the hospital where we could stay 24/7. And our wonderful family took care of our daughter. We were able to give full concentration to our newborn. We saw many doctors, asked many questions, did lots of internet searching, said many prayers, grew very tight in our marriage, and even had a good experience despite the circumstances.

For one, the kid nursed like a champ! No problem whatsoever (and continued for 19 months!) We had wonderful doctors and nurses, too. Family visited often and brought Meeskii - oh, how we missed her.

Blessed day! After one week, this special boy was good to come home. We were so happy. And I was quite confused about the future. And while there were still so many unanswered questions and the unknown loomed in front of us, we had indeed seen a miracle.

June 2007 - 13 mos.
Wyatt seemed like such a healthy and happy and normal little newborn. We knew something was very different about his brain and only time would tell how it would affect his development. Early Intervention started coming when he was just a month old. I was shocked that they would come that early. He doesn't need therapy! He's a newborn! But he didn't look at us. He was always staring into oblivion. And Wyatt didn't smile until he was 2 months. And he wasn't grabbing at toys or holding his head up. I began getting really nervous and sick about what the future would hold. Is this whole special needs life really going to come true? I don't want it! Please! I just want to bake cookies and have parties and go on trips with my perfect little family!

May 2010 - 4 yrs

It was very obvious that Wyatt would need a wheelchair. He was not putting any weight on his legs, attempting to sit up, let alone take a step by the time he was 18 months. We had him in a stroller that he was quickly outgrowing and it wasn't giving him the support that he needed. It made me sad to think about putting my child in a wheelchair. How was this going to be on our family? Would we be limited by a wheelchair? People would stare at us and feel sorry for us. I was NOT ready for this.

But my boy really needed the support. And as I concentrated on him and his comfort, my heart softened, changed, and anticipated the arrival of his new wheels. We were overjoyed the day it came! Even threw a party! Our big boy the Bugg was so happy and supported and all comfy cozy in his new set of hot wheels!

And then, it just got even better! Life just really seemed to become brighter and more joyful and my blessings seemed to burst out at me! What a glorious life!

Mother's Day 2009 - prego with #3

So was I afraid to have another child after Wyatt?
But we knew that we were not done creating our family.
Faith & prayers allowed me to trust that God
would give us the child that He wanted us to have.
And that's that.
To be honest, though,
fear tried to sneak in occasionally
but I had faith.
Faith is powerful.

June 2009 ~ Sweet'ems B-day

2 months old
Ella has brought so much beauty into our lives
in a trillion zillion ways.
As each of our children do.

Does it bother me that Wyatt doesn't have
a conclusive diagnosis?

Aug. 2009
The diagnosis thing consumed me for his first 18 months.
I was constantly researching, networking,
going to dr. appointments,
blah, blah.
I was so concentrated on getting a diagnosis
in order to figure out what Wyatt's future would be like,
that I missed maaaaaaany opportunities to just love my boy.
He was always Wyatt,
diagnosis or not.
Oh, the lessons I've been learning!
I should write a book someday.
But really,
this is what I learned from those
first couple of hard years:
that Wyatt will always be Wyatt,
ready & willing to offer his love & a smile.
That life is about celebrating!
Rejoicing in the beauty & wonder of this life.
The sun's rays as they come through the window,
creating the most majestic shadows.
How vibrant the autumn leaves are.
The dimple in a baby's cheek.
Reaching an inch stone like rolling over.
Being grateful to Heavenly Father for his gifts.

Tuesday, February 22

Love & cookies bring us together

It was a gorgeous days to eat cookies.
And be with friends.
And celebrate the love we have for our special
children and the joy they bring us.

the softest, plumpest sugar cookies ever,
killer giganto snickerdoodles,
wonderfully smooth cheesecake,
and happy strawberries.
Oh, it was a good time.
Treats were just a bonus.
The people were the real treats.
Bailee came many-a-mile to join us.
Boy, she just looooved on all our special ones.
She is in college and has such a passion for children
with special needs.
And by they way, our kids loved her right back
with their big ol' smiles.

I got to meet Chrystal for the first time!
She has so much info and got me excited
to watch this and learn about this.
Her handsome boy, Hunter, had me at first gaze
with his sweet beautiful eyes.

Bailee & Hunter

Chloe, in her angelic glory.
Always dressed to girlie perfection.
The sweetest smile.
Her mama, Tara, has brought
so many of us special moms together
through her truly awesome blog.

Dearest April, minus her sweet ('n sick but gettin' better!) Caleb.
It is always a joy to be in April's company.
So glad you could slip away
from a busy day for a bit!

This Bugg of mine inspires me daily.
To be a better mother, wife, friend, etc.
To gather this special circle together of those who "get it"
& eat cookies & share ideas & be there
for each other.
It was really splendid.

Thank you all for coming!

Wednesday, February 16

I heart hearts

Love-y glimpses of our V'tine Week......

I had a ball making Bugg's V'tines.
Idea from FamilyFun
The carrot stamps worked great.

scuse the hot glue line
And Mia's.......
so funny, right?
And the cousin's came to tea!
They dressed their best
and nibbled on heart-shaped food
and sipped tea from real teacups.
Then we all went crazy and exchanged

Auntie Em
haha, we've almost got the whole family
to buy Nikons!

My crafty contribution to this year's
V'tine whimsy filled with
valentine's from years gone by.

Mia made cards for everyone
and then we clipped a felt heart onto it
for the girls' hair.

Snuggles with Grandma

Snuggles with Grandpa

Snuggles with Grandma.
We are so happy to have so many
grandparents & family close to us!

Mia performed in a play at school.
The girl can haaaaaammmmm.

The Sweetheart Bubble Bath

Add this to a bubble bath
and you'll be a rock star!
The confetti looks awesome on top
of the pink bubbles.
Cookies, candles, and a favorite v'tine
book top it off.

I love this one

Valentine's Day morning
pretty much EQUALS
Christmas morning almost.
Cupid came in the night and gave everyone sticker kisses
on their cheeks and chocolate.
Which Mia & Ella quickly devoured at 5am!
I found them with chocolate all over their faces,
oh, my.

The candlelit breakfast:
chocolate heart pancakes with strawberries,
heart eggs over-easy,
strawberry milk,
raspberry heart gummies,
and cinnamon lips.
And personalized sugar cookies with lots of frosting.

These raspberry heart gummies
are right up there with chocolate.
Maybe even tied.

Both necklaces from Mia
She is so adorable.

Dinner by candlelight, naturally.
a PICNIC dinner.
With heart pizzas.

Bugg doesn't eat pizza.
Too tough to chew.
So he got some mixture of something
in the food processor.
Lucky guy.

By the way,
chocolate pancakes are not good.
Unless they have loads of strawberries on top.
I liked it but the rest of fam wasn't up for it.
So I had a re-do the next morning!
I mean, I couldn't allow a bad v'tine memory
to remain in their little heads now.
(I am completely absurd & ridiculous & I love it.)

Good night.
Hey, who else is comin' to the cookie party?