Emo

I'm nothing but a ball of crazy mama emotions today. We are at 6 days until surgery. My heart is full of so much love for this little boy, and that makes this all the more difficult.

He's my bubble-lovin' boy.

My expressive little wonder.

My peaceful sleeper.

My teeny-tiny miracle boy.

My tough medical man.

My trooper - 5 bouts with pneumonia isn't easy folks!

My innovative lad - everything can be made into a phone.

My sweet little scrub wearer.

My goofy goober.

The peanut-butter in our family sandwich.

My brilliant chap.

My adventurous laundry maker.

The very heartbeat in my soul.

My handsome hunk.

My "smile even after surgery" boy.

My life-changing miracle.

My son.

Thank you to all who continue to pray for his surgery on November 4th! Keep the prayers coming!

Well I never...

Before becoming a mom, I was full of all kinds of advice & tons of "my kid will never" statements. Well my friends, things have changed a bit. See for yourselves...

...my kid will NEVER eat mac'n'cheese from a box. Who does that mom think she is? Cook something nutritious for your kid! 
Truth is - Gavin eats mac'n'cheese from a box more times than I would like to admit. I'll be honest, at the end of a long day at work, we come home weary from the day & driving, and Gavin needs to eat right away - mac'n'cheese to the rescue! Plus it is one of the "safe foods" that he doesn't get stuck in his throat. Win-win!

...don't let your marriage fall through the cracks. 
Truth is - we are always working on it, but some days it takes a backseat to Gavin's needs. It isn't something we tried to do, it just happened. We are getting back on track, but scheduling time - making a set night your "date night" has been successful. Sometimes (ok...last night), I just wanted to veg out and watch TV. Thankfully I have a rock-solid husband who knows that those nights are important, so we sat down for date night. Guess what - I loved it!

...my kid will NEVER go out in public in mis-matched clothes.
Truth is - we have gone out in puked on/mis-matched/too-small clothes a few times. Now, I love dressing Gavin up so you won't see this all the time - but it does happen. So don't judge those kids. Mama is doing her best!

...don't let yourself go.
Truth is - while I haven't "let myself go", I have certainly let go of some previously important rituals. My nails are currently 1/2 chipped, my hands are cracking from hand washing, and most days my hair is "good enough".

...my kid will NEVER throw a fit in public.
Truth is - happens every time we try to leave the park. Nuff said.

...don't let the kid change you.
Truth is - Gavin has changed me in beautiful ways I could never have imagined. I am so grateful that the Lord saw me fit to be his mother. I didn't know that God could use your own kid to minister to your soul, but he has. Never did I think that I could love a little person so much. He and his daddy are my motivators. They are my world.

Bottom line - next time you are ready & set to judge a mama, remind yourself that she is doing her best. We don't know what is going on at home and we don't know how their day has unfolded.

So just show grace, and maybe even a smile.

Saw this sweet video today and I couldn't help but think of ALL mamas.

I blog...

Many times I sit down to express the inner workings of my heart, but nothing seems to be worthy of writing for anyone else to see.

Why do I blog anyway? is it for myself? for others? 

I blog

so that by sharing my heart. the aches. the joys. the everyday "normals". 

that maybe someone else out there needs to hear my heart, and then instantly know they aren't alone.

I blog

so that I can share the workings of the Lord in our lives.
I'm not much of a public speaker, but here - here I am able to be honest, open, and a tad bit vulnerable.

I blog

so I don't forget. 

Going into mommihood I knew I wouldn't be the type that kept tabs on when the first tooth came in, and second...and third. Bless you if you are!

I do remember the feeling when he first walked,
the feeling when he first said mama, and how my heart almost burst when he gave me that first kiss.
Funnily (or not), my calendar is filled with Dr. appointment dates, I know the date of his first, second, and third surgeries. I know the dates of his seizures,
and I can rattle off all the information necessary to get Gavin registered for a procedure.

I blog

because it is a creative outlet.

I can put my thoughts, dreams, fears, and hopes on here.
Mine - not anyone else's.

The List

I woke up this morning with my little guy on my mind. Mostly because he was in the other room - ready to be up for the morning. The other reason was a phone call from the Geneticist yesterday. Many of you know Gavin has an "extra variable" on his first chromosome. In order to know if it would be a future problem, Jason and I got tested. Turns out, I am the carrier of the "extra variable" too. In simple terms it means that we are both a little extra awesome. This variable has nothing to do with the "problem list" that Gavin has had to endure. It is just a part of our genetic make-up...lots of people have this extra variable, so maybe we aren't the only extra special ones out there.

That got me thinking of his problem list. Which got me thinking of the ways God has provided. Out of that, I felt the need to praise the Lord with you all. So here goes - his "problem list" and the huge ANSWERS that God has given us!

"Problem List:"
Premature baby. He is still on the small side (5%), but he is growing, and excelling intellectually.
Esphagus not attached to Stomach. Repaired on day of life two. Besides needing to cut his food up very small, he is doing well!!!
Ineffective Thermoregulation. He doesn't have this problem anymore! 
Congenital Anomaly of Spine. Will be repaired on November 4th! Prayers for this!!!
Scalp Cyst. (Spina Bifida). Removed the cyst with a successful surgery! Follow-up MRI March 2015 to see if the hole in Gavin's skull has closed - prayers for that too!
Heart Murmur. Ruled out any structural problems in July of this year. Should grow out of this.
Congenital Anomaly of Ear. Nothing needs to be done with it - just adds to his cuteness.
Port-wine Birthmark on left leg. Ruled out any vein anomalies. Besides being asked frequently if it is a rash, it is doing great!
Tethered Spinal Cord. Cord released May 2013. Doing great! There is still fluid on the spine, but we are praying that it will go away on its own! Follow-up MRI March 2015.
Urinary Tract Infection. Had one during NICU stay, no more since!
Seizures. He is off his seizure meds, and we are praying he stays seizure free!
Multiple bouts of Pneumonia. God was with him each time. It was never easy, but he was such a strong kid. Praying this winter is pneumonia FREE!
Acid Reflux Disease (GERD). Still has a very acidic stomach, but for the most part tolerates it well! When he was very tiny the reflux was so severe it caused heart rate drops. Now he will throw up sometimes, and have hiccups. Overall - doing well!

From this: December 16, 2012

To this: October 18, 2014

Praising the Lord today!

Germ Avoidance

Operation - "Avoid all Germs" is in full swing.

Gavin is scheduled for his spine surgery on November 4. That means our one primary goal is to keep him healthy. Sick Gavin means no surgery, and that means starting from square one on blood/urine test. So on strict orders from Surgeon's nurse, we are implementing extra hand washing, sanitizing phones, and staying home whenever possible. It will take an act of God to keep him healthy - kid always has his hands in his mouth! Prayers are welcomed!

Some of you following our journey remember the vertebrae anomaly in his lower spine. The technical name for it is a semi-segmented hemi-vertebrae (say that 10 times fast). Impressed with my medical terminology? Don't be - I had to practice saying it so many times - it was borderline OCD.

The surgery will be 3 hours long - and they will completely remove the extra 1/2 vertebrae in his lower back. Thankfully our sweet surgeon said this procedure is his favorite to do, and that kids Gavin's age heal like gang-busters.

We will be in the hospital for 5 days. The first 24-48 hours he will be in ICU - the nurse told me to warn family/friends that if they hear "ICU", not to be alarmed. It is normal protocol for patients to go straight to ICU - so consider yourselves warned.

Prayer specifics -

• That God would be glorified in all we say/do, and that Gavin's journey would be one that we can look at and see God's finger prints everywhere.
• For health before surgery and after surgery.
• For the surgeon (Dr. Polly - sweet, sweet man)/anesthesiologist (Dr. Castro-our favorite...yes we have a favorite)/nurses - that they would handle Gavin as if he was their own. That God would guide their hands as they work with my sweet little boy. {pause for tears}
• Patience. For Gavin before the surgery - no food is never a good thing for him. Patience. For us while we wait to get him back in our arms. Patience. For Gavin & us during our stay. One room - hooked to an IV pole - with lots of nurse checks (night and day)...it can make one weary. I am going to see what I can find for "new" exciting toys to bring with us...new seems to be better when it comes to keeping his attention.
• Healing. Pray against infection in the incision and pray that he heals quickly. The incision will be below the diaper line, so you can imagine the risk for infection.

We can't thank you all enough for the encouragement that we have received so far on this journey. 

Nap time - then we are off to enjoy this GORGE-us fall day!

Grace

The more I live, the more I realize that everyone has their own "hard".

...The father struggling to keep up with the ever growing demands of his wife and children.
...The daughter who lost her father. He was her hero - he always will be.
...The mother caring for her medically complex child. Day in-day out. No end, no break.
...The parents who lost their son. Why him? He was too young.
...The new mom, struggling to stay awake during nightly feeds. She can only hope to have enough energy to welcome visitors who come to see her new little one.
...The dad who regrets missing out on special moments in life, all because he was chasing the American Dream.
...The wife who clings to her lost love. Just one year ago. Running to his closet to get one last breath of his scent.
...The family, torn apart by a broken marriage. How did it come to this?
...The sister, longing for a healthy brother. Why does he seem so distant these days?
...The mama doing the parent thing on her own. What would she give for a break?
...The student who struggles each day, but one cruel peer's words make them question if all this is worth it.
...The parents who made it home from the longest hospital stay of their lives, only to feel overwhelmed beyond belief. How will they make it each day?
...The mom/wife/caregiver who fears what will happen when she is gone. Who will love on her littles like she does? Who will be the cheerleader for her husband? Can cancer be so cruel?
...The girl wondering if love will ever find her, or if it will only continue to find others around her.
...The one who by all appearances has it all together, while inside lies only broken pieces and broken dreams.


You see - we all have our own "hard". Don't believe me? Just look at your family. Your friends. Really look at them - really SEE them.

With outstretched arms, extend GRACE. Open up your hands and let love flow. Speak uplifting words, and always - ALWAYS know that God is in control of your "hard". He sees you in your need, and He isn't about to let go.
Rest in that. Some days it is all we have.

Guilty

Lately a big word in my life that I wish I could change/tackle/be done with is an ugly one -

GUILT.

I feel guilty for not spending enough time with Gavin.

Spending too much time with Gavin, and not enough with Jason.

I feel guilty for not cooking enough.

For not grocery shopping and coming up with healthy, organic meals.

I am guilty of not getting together with dear friends enough. Living 30 miles away has made a big impact on my relationships, and I want to change that.

Procrastination - ugh - it's another ugly word, and I am afraid it has become a part of my world. I have a number of unanswered emails, Facebook messages, and a check-list that is growing. Procrastination=Guilt for me.

I apologize for things that aren't in my control. I say "sorry" WAY more times in a day than a typical person does. Jason can attest to that - he hates it.

Now I think there is a reason that guilt comes into our minds.

When we have truly done something wrong.
However, when it creeps up in my life, it becomes consuming.
I need to learn to forgive myself, let it go, and move on.

As a mom, I think it is harder to find time for everything. So learning to prioritize what really matters is going to be key. Also, not letting procrastination get the best of me.

Here's to answering emails, messages, and getting some things checked off my list!