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.


  1. Oh sweet Bugg. SO much of your story reminded me of mine. I count you as one of the sweet blessings on this journey. The unexpected friendships are one of my favorite parts! Isn't it amazing to look back and see things so clearly? I guess we just learn in our own time. Thanks for sharing and teaching.

  2. Love this post and being able to hear the beginning of your story. Know what makes me super happy? That you still get to bake cookies, have parties, and go on trips with your perfect family just like you wanted! :)

  3. I think all of us with special kids lead a ver similar life. I couldn't have written it better myself. Caleb does have hydrocephalus as well as agenesis of the corpus collosum, among many other little things. But like you said he will always be who he is, whether we had a firm diagnosis or not!!

  4. So honest and true. We all struggled in our various ways when we first found out something was "wrong", and I am sure that my struggle would have lasted a lot longer if nobody could even give me diagnoses. There is a lot that I could comment on in this post, but I will just tell you that I loved it. Thanks.

  5. Love this post. It is amazing how different our boys are but yet our journey is so similar. I found myself saying uh huh, uh huh, through all of it - thoughts, feeling, in utero ultra sound, specialists, etc. I love your outlook and the faith you have. There have been many times when life gets tough, where Ryan and I just have to hold on to our hope and the knowledge we have that all will be well. Thanks again for writing about what we all face. It helps to know we are not alone in some of our thoughts and feelings. Now... if it weren't so late, I'd go eat a cookie. :)

  6. Bree I love when you share your amazing life stories and your beautiful pictures! I love Wyatt just the way he is :)

  7. Thank you for sharing your story. It really does show what a beautiful and refining journey this really is. I believe in big miracles and I believe in the countless mini-miracles that happen along the way - it just takes special eyes to see them:) Love to Bugg from Bear:)

  8. I found your blog via a comment you left on Reagans blob. weird, I know. But i am so glad i did. Our stories are very similar. I am only one year into mine. So It was good to read about Wyatt, thanks for sharing.

  9. I was hunting for cake mix cookies and stumbled across your blog. I sure didn't expect to be sitting here twenty minutes later with tears in my eyes. You have a beautiful family.

  10. Your sweet little boy is precious!! he has the same curls as my frankie :)
    do you hear "look at those curls" 50 million times a day, by any chance?

  11. thanks again. as before. our stories are so similar: agengenis of the cc, SOD, ventricular megaly and the sheer joy of this little boy in our lives.
    He was 3rd of 4 and is so much a part of our lives we can't imagine life without him.
    love the curls

  12. I think I knew you when I worked at Kids Who Count back in... hmm... 2007-8 ?? Wyatt looks very familiar, I never worked with him but I remember him from the outings at the pond and what-not. Anyway, I am glad I came across your blog. Very inspiring and so sweet. Thanks for sharing.

  13. I just found your blog. Sweet Bugg is adorable! Not having a diagnosis is frusterating, and not knowing what the future holds is a scary thing. With my Hanna it's the same thing. We are so grateful and thankful for her gifts and celebrate her "uniqueness" every day!
    I hope you dont mind if I follow!

  14. Your Bugg is amazingly handsome. You're whole family is beautiful. Thank you so much for sharing your story. It was fantastically uplifting.

  15. I found your blog from the ACC website. I LOVE your choice to celebrate life and love your kids amazingly! I too have a sweet girl with ACC, among other things. I've just read a little bit of your blog, and I am encouraged to continuing rejoicing and celebrating. Thank you!

  16. My son has the Same thing. I didn't even know that he had it till he was six months old. And the only reason they the dr did anything is because one day my mom came to dr app. He was having a real hard time with walking talking or crawling he is now 8 years old now and is just starting to walking with help of a walker. I know how you feel went I found out about it. I felt like I did something too. And my ex just stop carrying about me and him. I could never get him to hold him.


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