Words Of Encouragement...

Corbin and I can't believe it has been a whole month since our first ultrasound at 19 weeks when we found out that there might be something wrong, and 3 weeks since we found out that our little baby has Spina Bifida. For me it feels like its been so much longer than that. I guess that is because so much has happened in such a short period of time. Our "plan" to have a baby, move to Oregon, and for Corbin to start the PA program at OHSU have been put on hold...well at least 2 of the 3. Our little baby of course is still on her way, just not as we expected. We have had time to process a lot during the last 3 weeks. Going from shock to fear and now back to the excitement of having a baby girl.

My biggest fear now is not having a baby girl with Spina Bifida, but having a baby girl that will have to go through so much during the first few hours of her life. I'm trying to take things one step at a time and not think too far beyond that. Well, last night Corbin and I went to Primary Children's Hospital to the Spina Bifida Education night. We got the opportunity to hear from some incredible people. After the speakers, there was a Q&A portion where we learned so much from the questions that other parents who had kids of all different ages asked. When the workshop was finished we talked with several other parents. I can't tell you how encouraged and inspired I was. Although I didn't make it through the night without shedding a few tears, it was a different feeling to be surrounded by other mom's who knew exactly how I was feeling and what I was going through. When I expressed my fears about having our little girl only to have her immediately taken from me to go into surgery, I knew that there were others who had experienced this as well and survived it. One cute mom told me that it is the "worst part of the best day". I know that it will be the hardest thing I have ever done as a mother. But I was given the advice to focus not on the surgeries (as there will be many) but on the outcomes. Still I can't fathom how I will cope with recovering from a c-section when I want to comfort my small and helpless infant. How does anyone do it? They do it because it is the only thing they can do. Put all of our trust in the Dr.'s and nurses to take care of our babies. And now I have peace in my heart knowing that at least Corbin will be here in Utah, instead of Oregon. I know I will get through it because others have....and have lived to tell the tale. I made some great connections and learned so much. I have learned that we will be better for it because I see it in the parents I met. They are loving, compassionate, and strong people. I only hope I can live up to the task.

I haven't had a chance to blog yet so I apologize to those who were expecting a beautifully composed "Corbin Blog". Don't worry, he'll be back!

Kenz...

I thought my wife and I were close. After 7 years of marriage and two children with one on the way...I thought we were really tight and had things figured out. I knew I admired her more than anyone I've ever known...and that my time with her was more precious every day...but let me tell you that up until a few weeks ago...I hadn't even scratched the surface of my capacity for loving her.

It has been an honor to be by her side through all of this. Her strength rubs off on me...and I find that the more I'm around her...the more I like myself. She lifts me up...and reassures me in every way. Though outward appearances might lend themselves to the perception that I am the strong one of the pair...let me be perfectly clear...her quiet and tender disposition compliment her stalwart and courageous spirit. She represents all that is good and wonderful in this world...and as I have the privilege of watching her every day...I am in awe. I can never be worthy of such a companion...but I will spend my life trying to earn her regardless of the fact that every moment I'm with her...I fall deeper and deeper in debt. She is so much better than me...and our future challenges will be met with the incredible resolve of a wonderful wife and mother...the most wonderful.

I suppose only men who truly adore their wives and love them in a way no words can describe can really understand what I mean here. I just want everyone to know how I feel about my sweetheart...so that everyone can see the team that we are...and will forever be.

A big thank you to everyone who is helping us...just wanted you to know that we're up to the challenge...

Just hoping I can keep up with her...

Too Happy to be Sad...

We can't help but be overwhelmed by the outpouring of support from family and friends. Ever since we received the news, many have come to our rescue desperately wanting to help in some way. That's when some of our loved ones suggested we start a charity donation fund in our little girls behalf. Because of our pride...and the excuse of not wanting to "burden people" we were hesitant to open up our lives and our need to everyone we knew. We had always been so sufficient, so capable. For the most part, we had always found ourselves on the other side of things. But now...without work...beginning graduate school with the hopes that loans see us through...we found ourselves falling short in many ways. Realizing, through the gentle persuasion of those closest to us, that this could be a means to get the help we so desperately need during this difficult time, we moved forward with the idea...nervous of how we as parents would be perceived. We did it in the humble hope of providing our dearest family and friends a means to help our little girl...help her in a way that we cannot under the current circumstances. It is particularly hard for me, as a father, to admit to myself and others...that I'm not in the position to give my little girl what she needs. I know I will get there...but I am not there now...and stepping aside and letting others do what I cannot...has been challenging. However, I can say from the bottom of my heart...that I am forever changed.

Never, and I mean NEVER, could we have imagined the magnitude of goodness that exists in the hearts of those we call family, friends, and even strangers. There is a kindness and love in every corner of this world that trumps even the darkest evil, sadness, or pain.

May everyone who has helped us so much find all the blessings they stand in need of. I have never in my life felt that God is so acutely aware of us. I know He knows us...personally...but as I've spent more time on my knees than on my feet over the past few weeks...I have felt His presence...felt His reassuring hand on my shoulder...

Thanks to Him...and thanks to all of our family and friends...we can and will do this...

My dear friend and fellow writer Wes Stephenson wrote this poem. He too has a daughter with very special and wonderful challenges...

THE PITIFUL EAGLE

In the thick southern forests I used to call home
The eagle flew proudly, the sky was her throne.
'Was there 'neath a pine tree I watched as she soared;
The master of skills I’ve always adored.

She trimmed to the breezes for effortless lift,
To float like a kite on the string of her gift.
Her eyes caught a movement, at once she descends;
Then, clutching her prey, she returned to the winds.

As I sat in that forest, impressed by the sight,
A duck waddled up and he quacked with his might:
"I pity those eagles, I'm sorry for them;
Those handicapped bird-brains, they can't even swim!

Their toes look so funny, no webs on their feet;
Compared to us ducks, those birds aren't complete!"
The duck waddled off just as quick as he came,
When in flew a robin who started the same;

“I pity those eagles; it’s such a sad thing,
Those handicapped bird-brains, they can’t even sing!
Such squawking and screeching, why can’t they just ‘tweet’?
Compared to us robins, those birds aren’t complete.”

The robin flew skyward, I sat and I stared;
For fowl-mouthed opinions I wasn’t prepared.
The duck and the robin both tended to find
The lacking in others, and so they were blind

To all of the virtues the eagle displays,
Her strength and her beauty, so worthy of praise.
I learned then a lesson that reaches so far;
Forget other’s limits, just see what they are!

The News from UCSF

A world renowned MD from UCSF called my sweet wife yesterday to discuss the fetal surgery we hoped to qualify for. His hesitation was very evident in all that he said. He wanted to call us personally to discuss it because of the fondness his nurse Rachel has towards McKenzie...like she always does...Kenz touched his nurses heart through her sweet disposition. These doctors and nurses are truly wonderful miracle workers...trying everything possible to help unborn children with SB. However, sometimes their willingness and ability is thwarted by their duty to 'do no harm' and he voiced his concern with regard to this...stating that the possible risks of compounding the SB with severe prematurity far outweigh any benefits associated with the fetal surgery. One of the biggest risks associated with the fetal surgery is premature labor. Imagine a C-Section being performed...pulling the baby halfway out...performing a surgery...and then putting the baby back in...hoping it will stay there for 10 to 12 more weeks. It's incredible a procedure like this ever works! Unfortunately, McKenzie's history of delivering too early, in that she delivered Wyatt at 35 weeks 6 days...really worried the MD and everyone at UCSF associated with our case. He said he would continue to talk it over with the other physicians, but stated that our situation was a questionable one.

Our attempts to qualify for the fetal surgery came to an end early this morning. Rachel, the amazingly friendly and tenderhearted nurse at UCSF spoke to McKenzie for nearly an hour today. Ultimately it was decided that McKenzie and our little girl would not be good candidates for the fetal surgery. Rachel comforted us by explaining their decision perfectly.

She said: Most children with SB who do well...do well because of their parents. She complimented us by saying that she thought our little girl would thrive...not because of the timing of surgery...but because of the care she would receive from loving parents throughout her life. Tears fell freely from our faces as we both listened to her explanation...trying desperately to believe the compliments and reassurance she was giving. She stated that the fetal surgery has only been shown to benefit an estimated 30% of those babies who receive it. The other 70% show no benefit or worse. She ultimately stated that gambling to be one of the 30% with the risk of prematurity would not be a wise endeavor. "Imagine" she said "your baby has SB, a fetal surgery is performed, only to cause your wife to deliver at 25 or 26 weeks. Now you have a child with an open wound from surgery, SB, and all the horrible complications of prematurity, including potentially lifelong issues with lung function, neurological function, etc...it's just not worth it." We told her that we were going to strive toward the goal of fetal surgery until every avenue was exhausted...until everyone said no...and that's what we did. Rachel said that they wanted so very much to make an exception in our case...but ultimately could not come to feel comfortable with it. Who are we to argue with the best physicians in the world. If they feel that the procedure was likely to hurt our baby more that help her...then who are we to push further. We only want what is best for her...and what is best for her now is to wait until she is born...have the procedure...and nurse her to health and strength throughout the rest of her life.

It is strange how things happen. We can't help but feel the divine hand of a loving Father in Heaven in all of this. Wyatt too early but was fine in every way...and 5 years later...that fact would be the determining factor in a decision nobody alive should ever have to make...and nobody had to. It was made for us. This knowledge alone gives us peace and hope for the future. We can now look our little angel in the eyes and tell her, "we did all we could have before you were born...and we will do all that we can now and forever...to give you the life you deserve."

A BIG thank you to all our friends as UCSF for their honesty and integrity. God bless you all.

Gratitude beyond measure...

We just wanted to take a moment to thank EVERYONE who has supported our little girl with prayers, thoughts, kind words, and incredibly generous donations. I can barely type through the tears...but I am trying so desperately to reach all of you to thank you...but it doesn't seem sufficient for how we feel. We initially decreased our financial goal with regard to donations...because it was such an astronomical amount...we didn't feel like we'd ever reach it...or that people would even donate because the goal was so lofty. But we are so very humbled by the outpouring of support...and amazed at the generosity displayed. We changed the goal amount back...with confidence that it is within reach and could ultimately be the answer to many of our little girls challenges.

She doesn't even have a name yet...but still you give and give and give. I am convinced that you are all angels...sent by a loving God to help our little girl. I will forever believe this. Thank you...thank you...thank you.

The Following Weeks...

We had never understood what it meant to fear the unknown...until we were forced to wait an excruciating week to see the perinatologist at IMC in SLC. It felt like an eternity. To compound the emotions...I carried the casket of my dear grandfather William Weston Garrett to his final resting place just days before our appointment. Needless to say...we were all very drained. However, we have the most wonderful family and friends in the world and our support system is incredible.

The day came...and the our fears were confirmed. Our little girl has Spina Bifida with the opening in her spine just below L4. Children with Spina Bifida have very unique challenges that can vary greatly in severity. We can only hope and pray that our prayers will be answered and our little girl will have a chance at a relatively normal life.

Our lives are split in two. Like a large gaping wound separating decades of time, our lives suddenly changed forever on February 21st, 2012.

The day started with a blanket of nervous anticipation enveloping our household. It was the day we were going to find out...find out if our little baby to come would prefer blue or pink. Everyone had an opinion, the boys expected to become the dominant force in the home after HIS arrival. However, the girls were subtle in their confidence that the new addition would add just enough feminine to control the home forever.

The time for the ultrasound came and we all looked on in shear delight and excitement. The technician asked, "well, would you like to know what you're having?" a collective "YEAH!" was the energetic response she invited. It turns out, Mom knew all along...our precious little angel to come...would most certainly be very fond of pink.

In all the excitement, we almost overlooked the concern that suddenly swept over the technicians face. It was clear that she saw something very wrong with the images she was so meticulously reviewing. "What are you looking for?" we asked. "Just making sure everything is where it's supposed to be," she replied vaguely. But something about the look on her face and the time she spent analyzing the shape of our little girls head made us uneasy. "Does everything look alright?" we asked. "From what I can tell, but the radiologist will have to look it over," she said with an air of uncertainty that she failed to hide. "Congratulations," she said as we left the room. "Thank you so much," we replied...and we left with a false sense of hope and comfort that would fade as quickly as it appeared.

We spent the next few hours celebrating the news...calling family...texting friends...enjoying the prospects of a wonderful knew life to come. We enjoyed lunch together and talked about baby girl names...never fully agreeing on one...but pacifying those making the suggestions by complimenting the originality of their creations...then quickly offering a seemingly more appropriate name.

Then...it was time for the routine OB/GYN appointment. We arrived early and were quickly brought back to the exam room. I will always remember looking up and my beautiful wife...as in love as we've ever been...basking in the wonder that our love has once again created life.

The doctor walked in...shook my hand firmly...and sat down. He let out a big sigh and spoke words that I will foerever wish he could take back. "Well, I'm really worried about your baby girl."

The world stopped turning. In that moment, there was nothing else in the world that mattered. The triviality of current challenges caused them to fade from existence and suddenly...everything we ever knew...changed. It was like this doctor took a sword and split the timeline of our lives in two. When it comes to the words he spoke...there will forever be...before we heard them...and after.