Wednesday, November 30, 2011

It's beginning to look a lot like Christmas...



Tuesday, November 29, 2011

Thanksgiving Day


We drove a little south for Thanksgiving so we could spend the day with my grandparents and extended family. I have such fond memories of running around their yard barefoot with my cousins each Thanksgiving, sneaking off behind our Great Grandmother's house to pick oranges off the neighbor's orange tree, suck the honey out of the hibiscus flowers, climb the gorgeous Oak trees in our Great Grandmother's front yard, and race one another by running the length of the yard on top of rolling cable spools. Those were some fun times.

The older one below was my partner in crime growing up. We always got in trouble at some point, and our grandmother would make us sit in the livingroom and read the bible when we fought with one another. She taught me how to clean pig pens and help calm down a steer. We always talked about sneaking out at night on an adventure of running through some neighboring orange groves, but we never did it. She was my closest cousin in age and friendship. I sure do love this gal.
It was so good to be back here for Thanksgiving. It was good to hear my grandfather's heartfelt prayer and remember back on the past few years of family gatherings. It was a delight to watch our children play with my cousins' children and form those relationships and long-lasting friendships while sharing with them our own stories of when we were their age.
The little guy was a bit off that day, sleeping for a good portion of the visit and just being pretty low key. He did perk up the last 20 minutes or so of our visit, but he missed most all of the fun with all of the cousins. He just didn't last too long playing.

It was a wonderful day of family fellowship and reflecting on the blessings that have engulfed each of our lives not only this year, but for the past several years.

Tuesday, November 22, 2011

Thankfulness


He rustled a bit in the covers as I peeked around the crack in the door, confirming my suspicions that he was indeed waking from his nap. I crept up to his side of the bed, ducked my head under the top bunk, and was greeted with a sleepy smile and arms outstretched. As I snuggled in on the wall side of the bed, he wrapped his soft, skinny arms around my neck and pulled me close until our foreheads touched. I brushed the tip of my nose across his cheek. Even after almost-4 years, his skin is still so soft.
"You're my snugglebug. Snuggle, snuggle, snuggle." he uttered as he somehow inched his tiny body closer to mine. It's a ritual, these few minutes of cuddle time when he wakes. Oh, how I wish I could bottle up that feeling, those smells, the emotions of that special time together. That love.
Lately, my thoughts have often gone back to those first few months of his life. He was a little over 2 months old when our neurologist took account of his symptoms and instantly said he thought our son had SMA (a neuromuscular disease with usually a very short life span). Our world seemed to crumble for a while surrounding that appointment. It was our first realization that Nathan's serious symptoms weren't transient like we had hoped, that he was more than likely facing something that would dramatically affect his life, and that his life was indeed in jeopardy. Thankfully, we realized a few weeks later that Nate did not have SMA, but those terrifying few weeks were our induction into the fear of wondering what our son may face due to the genetic defects of his body.
To say that we were scared and heartbroken those first couple of weeks after that initial neurology appointment is a vast understatement. I prayed for God to heal Nathan's broken body. But in those same prayers, I would beg God that if it was his will for Nathan to die early and be completely healed in heaven, that he would take him quickly...soon. They were the hardest words I had ever uttered, and the prayer was two-fold...

At that point in the overwhelming information and emotional overload of the new medical world we had entered, I was horribly frightened that Nathan would suffer through the durations of his life with the frailties of his body. As parents, we automatically want to protect our children from the pain and sufferings in this world, and it was excruciating knowing that I could not protect my son from his genetic flaw. But what I didn't know then was that my views and expectations of the "suffering with a disease" I had imagined were skewed by fear. Yes, Nathan's life is different. His body does not work like it should, he lives with daily pain and discomfort, and he is not able to keep up with kids his age...but, he is not suffering. He is living...and living happily, joyfully, and full of zeal and laughter and enjoyment. Simply put, his life is amazing. That was something I could not foresee during those grueling first few weeks of his life when everything looked so grim.
But the main reason for the difficult prayer was sadly a purely selfish reason. The little guy who I had carried inside of me for 9 months, and who I had held in my arms for a few weeks, had stolen my heart like all of our children do. When we were told that his life could be shortened, I was literally afraid to love him anymore than I already did. I was afraid to love something so dear to me that could be taken away, and I knew that I could not protect my heart from loving him more each day. I had no idea that amidst the difficult, painful, and arduous circumstances that encompassed my son's life, that he would grow to show honor and glory to our God each day through his multiple trials and tribulations on this earth.
"Heavenly Father, please heal my son's body so that he may live a long life. But if that is not your will, please take him. He is your child. I freely give him back to you."  That was my heart-wrenching prayer during those excruciating first few weeks of Nate's life.

And in response, God spoke to my heart through his word with instructions to trust him: "O taste and see that the Lord is good: blessed is the man that trusteth in him." Psalm 34:8, to know that he was always in control: "the Lord is in his holy temple: let all the earth keep silence before him.” Habakkuk 2:20, and to give him honor and praise and gratitude, even through the hardest of trials: "O give thanks unto the Lord, for he is good: for his mercy endureth for ever." Psalm 107:1
This year, I am thankful that God hears our prayers but does not answer some of them. I am so very thankful that our omniscient God knows every intricate detail of our lives and how to lead us through the mountains and valleys. I am thankful that while he has not taken away Nate's disease, he has given us the tools and attitudes to live a joyful and fulfilling life amidst the trials we all have been given.

I am thankful for today...that I can kiss my husband when he gets home from work each day and hug my girls before they walk into school. I am thankful that we have been given the gift of not taking these precious years together for granted. And I am thankful for the little fingers that still wrap around my hand, for the little brown eyes framed in beautifully long eyelashes peering into my own eyes, for that coarse, brown hair that I love to run my fingers through, for that smell...however metabolically smelly it may be at the time, for the sword and gun fights, and for the belly laughs that I can't get enough of hearing. I am thankful that God knows the course our lives will take and how to prepare us along the way. I am thankful for the knowledge that God is on his throne and forever in control.

"O give thanks unto the Lord, for he is good: for his mercy endureth for ever." Psalm 107:1


Friday, November 18, 2011

November


The girls have been super busy this week with all kids of activities as we make the whirlwind round of activities to wrap up the end of the year. Thankfully, 2 of Nate's appts scheduled for this week were canceled and rescheduled, freeing up some much needed time to shuttle the girls around.
Both girls have been in an after school program one day a week at a local church with quite a few of their friends. They have had a blast in this program the past couple of months, as they work on crafts, snacks, and a little play/singing performance. Wednesday night was the big night of the performance, and both girls were giddy with excitement all week long leading up to this night. It was so much fun watching them sing and dance in front of the audience.
 
I know I say this a lot, but they are getting so big! That fact stops me in my tracks every once in a while as I see them tackle so many circumstances with maturity and less need for help.
Emma's Thanksgiving feast with her kindergarten class was yesterday. We had the same feast with this teacher 2 years ago when Abby was in her class, so it was fun to be able to participate with the adorable pilgrims and indians once again.
 
Emma has a really great class this year. Being able to volunteer for a few hours each week, it has been such a joy to get to know the little personalities of the kids in her class. And it has been an even greater pleasure to see her grow intellectually and develop unique friendships throughout the year. I often wonder what these little kindergartners will be doing 20 years from now. I can't wait to find out.

Sunday, November 13, 2011

I love this kid


Wednesday, November 9, 2011

An update


I have figured out that "down time" just doesn't happen when you have 3 active kiddos. We are busy...really busy...but its a good busy. Just when certain extra-curricular activities end, they seem to be replaced by some other avenue that keeps us running around like crazy. Unfortunately, the incessant "going" coupled with the time change has worn on the little guy lately, so I am hoping that we can get things to slow down just a bit to accommodate his long nap schedule once again.
I love this time of year. Thanksgiving feasts at the girls' school, shopping for Christmas gifts, birthday cupcakes and pajama days at school, and our big 2 week trip up north is all coming in the next few weeks. I can hardly believe it...nor am I ready for it in the least!!

As for the quintessential update, everyone is doing well. Abby had an awesome report card, incredible end to her soccer season, and is looking forward to being 8 years old in a little over a month. 8. Seriously? 8?? She still reigns supreme as the first-born pleaser. Barring all the incessant 2nd grade humor that isn't funny whatsoever, this gal is a pure delight.
Emma is her sweet ole' stinker self. She is such a sweet heart and so well-behaved at school. She is reading like a champ now and really excited about learning anything she can get her hands on. She's still absolutely hilarious and quite a stinker at times. That kid can go from making me laugh to driving me crazy in about 1.28 seconds. She's one of a kind. And she will be 6 in two months.
The little guy will be 4 in almost three months. Seriously. Where have the past years with my little baby gone? He has demanded that we stop calling him the "baby", to which we have sadly obliged. But he's totally right...he's not a baby at all.
The little man is doing well. He has adjusted to this permanent stimulator well. We have an appt with his surgeon next week, where I think he *may* need a little adjustment to get the little guy to eat more, but he is doing really well overall with very few of the symptoms of gastroparesis that he used to encounter each day. He still gets at least half of his calories by tube feeds, but he is tolerating those quite well. This stimulator has been truly life altering for Nate.
We rescheduled his appts in Houston for January and were able to add one more appt for the week...for a cardiologist specializing in autonomic dysfunction. This doctor has found some interesting information regarding certain mito patients, and we hope that he can play a huge role in Nate's care as well. Specifically, we pray that he will be able to explain to us why Nate's body responds with exhausting retractions, tachypnea, and metabolic acidosis when he is off his O2 for a prolonged period. Its a phenomenon that has had so many of his doctors baffled his entire life but willing to give their theories to why these symptoms occur. However, if testing can show that it stems from a cardiac issue, there is the potential that it can be corrected. And if it can be corrected, there is the potential that Nathan can come off his extra O2. I can not explain how incredible this will be if it is the case. Equally, I can not describe how hard it is to not get our hopes up that a "quick fix" can get rid of his extra tubes. We are so optimistic but trying to be realistic at the same time. But our prayer is that this cardiologist can help Nathan. We'll know more after our appts in January.
So, that's about it here. Nate has an appt with surgery next week...pulmo and GI next month, with neuro following closely behind. And then lies the marathon of appts with the docs in Houston. The little guy and I will leave the week after we arrive home from our Christmas trip and be gone the full 2nd week of January. Although it will be a hard and long trip out there, we will have the wonderful privilege of reuniting with a few of our very close friends while there. We can barely wait!!
 Yes, it will be a busy few months around here.

Monday, November 7, 2011

Memorizing those teeny tiny voices


Wednesday, November 2, 2011

Halloween 2011


It was most definitely a day to be remembered...or yet, a few weeks to be remembered. Halloween just seems to be that way for us at this time in our lives. I have yet to write about our fun adventure to the Mickey's Not So Scary Halloween Party the weekend before Nate's big surgery, where all of the kids dressed in their costumes and smiled their biggest smiles throughout the night at Disney.
And we can't forget the trunk-or-treat fun the kids had when all of these pics were taken. It is an annual tradition at one of the churches close to our house, where a whole lot of the kiddos' friends all come out dressed to the hilt for this fun night.
 This year is the first in about 3 years that at least one of my little hooligans didn't have a fever (knock on wood or whatever may work in this situation) this time of year. Therefore, we met some good friends in one of the coolest neighborhoods around for some stellar trick-or-treating! The kids had a blast! And I totally didn't bring my camera for that night of adventure.
This was the absolute first year that all three of the little munchkins totally "got" the adventure and fun of trick-or-treating. As a parent, it was so exciting to see them run from house to house without having to prompt them on what to say and when to say it. They are getting so big. All of a sudden.
Natester hung with the big kids for a few houses before he was pretty gassed. He then had the luxury privilege of riding in his cool stroller for the rest of the hour and a half the other kids proceeded to run across the neighborhood while we trailed behind. They were even so confident as they visited the cool haunted house in the neighborhood and popped their little eyes out of their heads as someone ran toward them with a loud chain saw. It was quite hysterical, if I do say so myself.
It was a fun night...well, a fun few weeks, since they have worn their costumes quite a few times already. These are just some of the days that create lasting memories.

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