Sunday, February 27, 2011

Maggie Agnew

"Let us therefore come boldly unto the throne of grace, that we may obtain mercy, and find grace to help in time of need." Hebrews 4:16

One of the most rewarding parts of having a child with mito is that you become attached to other families and children suffering through the effects of this disease. You lift each other up through the struggles and support one another through the difficult parts of daily life. You become attached...even to those you have never met.

One of the most difficult parts of having a child with mito is that you also watch some of the children in this "medical community" that you grow to love...die.

Please keep the Agnew family in your prayers as they watched their daughter, Maggie, take her last breath on this earth last night.

Thursday, February 24, 2011

3 years

My dearest Nathan,

My baby boy. My little man. My precious love. My only son.

Today marks a momentous milestone in your life...your 3rd birthday. Its the fun-loving year in age where you have left toddlerhood behind but aren't quite a full-fledged preschooler quite yet. Its a year packed with development...of understanding the world and those around you better, of desiring to learn more of what you don't know, and of trying to understand your fit in social situations and relationships with others. I find that the age of 3 is somewhat of a turning point in life...the time where we, as parents, realize for sure that if we don't soak everything up quickly, we will miss out on a lot.

I recently found some snapshots of you taken when you were just a few months old. Looking through the pictures, a feeling of uneasiness came over me as I remembered those many months of intense worry and fear regarding your health...and life. It seems that bad memories cast a shadow on the good ones, blocking the mind from being able to recall the happy moments as easily. I worry that this will be the case all throughout your life...that we will first recall all the intensely difficult moments before remembering how incredible your life is on a regular basis. Let me assure you, we have wonderful days most of the time...days of incredible happiness, days of dancing around the livingroom hand in hand, some days of wonderful monotony, and others of life's normal busy schedule.

In future years, I hope I look back on each preceding year of pictures and remember the good moments before the ones that make our hearts sink with worry and sadness. I want to remember the pitter-patter of your feet through the kitchen late at night as you try to sneak into our bed. I'll remember your soft hand finding my face, and your fingers stroking my cheek as you try so desperately to fall back asleep. I'll remember you wrapping your arms around my legs and uttering "I weally yove you, mama!" Your laughter and squeals of delight when I jump around a corner to scare you. The way you curl up perfectly to me after proclaiming "I wanna snuggle". I'll remember you calling Swiss Cake Rolls "chocolate boobies" for some strange reason that we will never know. And how you have perfected your "Spongebob Laugh". And the hilarity of watching you try so hard to tell knock-knock jokes the right way. These...these are the moments I want to remember first about this past year.

Your personality really blossomed through the duration of this last year. It was a rough few months there, but after you started on meds for excessive ammonia, you returned to the precious little boy we had always known. You are very ternderhearted. Your lip pouts and you tear up every time you see either of your sisters crying. Watching your sense of remorse every time you get in trouble is rewarding and tough at the same time. That being said, you are still extremely strong-willed and stubborn. I believe that these two personality traits (if managed in the right way) will help you trudge through your struggles in your unique daily life. And I do have to add that you are indeed the third child, so we are guilty of letting you get away with more than we ever let your sisters. This is something we always struggle with...when to push you and when to relax.

Friendships have become more dear to you lately. You will automatically say that Emma is your best friend, and in all honesty, she is. You two have really hit it off this year...taking daily pretend trips to China, playing mommy and baby, and pretending to own a restaurant. You have a special relationship and friendship with both of your sisters on different levels. Abby mothers you in a genuine and tenderhearted way while Emma treats you like a pal. It has been so rewarding to see your desire for friendships and relationships develop lately.

My dear son, I never know what the next year will bring with you. This year brought only one hospital admission (yay!), a few tests, countless doctor and therapy appts, a few new concerns with different organs affected by mito, and some new meds to help alleviate the symptoms brought on by this awful disease. Looking back over the year, we have seen some increase in medical concerns and we have lots of questions about what the next year will hold for you. And we continue to pray for you daily...that God will continue to give you the strength, ambition, and desire to live life and honor him.

We love you, our precious Nafey boy. Happy 3rd Birthday, my darling son.

Tuesday, February 22, 2011

Disney with friends

Since all of the kids' birthdays are right around Christmas, they usually get inundated with so many presents at the same time. Due to this, we gave them the option this year to either get presents for their birthdays or go to Disney for a day. They quickly yelled at the top of their lungs, "DISNEY!" We planned to go sometime before Nate's 3rd birthday because kids are still free until they turn 3. After that, we might as well refinance the house and sell our kidneys if we want to partake in the magic of Disney anymore.Right around the time we started talking about making plans to go, I got word that our dear Houston compadres, the Knights, were going on a cruise and ending that trip with a day at Magic Kingdom and wanted to know if there was a chance we could all catch up on some visiting while they were so close. Once the kids caught wind that we were going with the Knights and that they would finally get to meet Lauren, they were beyond ecstatic. You see, Nate and I have been able to spend a good amount of time with them while staying at what we refer to as "The Knight Hotel" when we go to Houston, but Jay and the girls have never actually met them...they have only heard stories and seen pictures.This trip was exactly what Ben, Missy and Lauren have needed after the extremely difficult 5 months they have encountered. About 2 weeks before Samuel died, it was decided that his Make-a-Wish trip would be to stay at "Give Kids the World" and go to the Disney parks. The trip was set for the first week in December, and they were all so excited. Lauren was beside herself with excitement about the plans for that trip, and relaying Missy's words "when Samuel died, she not only struggled with the loss of her brother and best friend, but she struggled with the sadness that she wouldn't be going to Disney." I am so very happy that she was able to experience this dream.As we were preparing for the day trip last week, Emma interjected a couple of times about how sad she was that Samuel never got to go to Disney and would never ever be able to go since he was now in heaven. This gave me a great opportunity to read her what Missy had written on her blog the week they should have been going on Samuel's Make-a-Wish trip: "I had huge hopes of showing the Magic Kingdom to Samuel this week. I hoped to see the wonder in his eyes as he saw the most spectacular sights. It would be a beautiful experience and a once in a lifetime event for him. He'd eat ice cream and for one week, he'd have no doctors, therapies, or medical interventions. But, instead, Samuel is playing in the most magical of kingdoms... Heaven! The sights he sees are so much more spectacular than anything at Disney. The wonder in his eyes is not brought on by a fireworks display, but by the love of God. And, at the end of the week, he won't have to leave. He will play in the Magic Kingdom forever... and someday, I will play with him!"

I still can not read that without tearing up. What incredible insight from a broken-hearted mother.

I can not explain what a wonderful honor it was to be able to experience this day with our dear friends, not to even mention how much fun it all was. Knowing that Lauren's personality was so close to Emma's, we had previously pegged that they would be fast friends when they would finally get to meet each other. They were indeed joined at the hip within the first 5 minutes of "meeting". Ben and Jay were able to get to know one another, and Missy and I started back where we had left off in October...just talking nonstop throughout the day. I sure have missed them all, and this day with these dear friends was a sweet comfort to my heart.
The day was truly so wonderful. We trudged through the craziness of Disney on a holiday weekend, being dive-bombed by birds who poop as they fly over you, corralling kiddos through the crowds, walking in herds eerily similar to those in feed lots, and getting quite pink due to the absence of a layer of sunscreen. We watched the kids as their heads flopped around on the teacups, as they screamed or held on for dear life on the roller coaster, as they tried touching the 3D objects that seemed right in front of them during the Philharmagic movie, and as they walked beside each other, locked arm in arm for a vast majority of the day. I thought of Samuel several times throughout the day...during the Monsters Inc show, the Buzz ride, the fireworks. I thought of how I wished he could indeed be here with his family experiencing all of this...but I was immediately reminded of the words of his dear mother that I mentioned previously and was thankful to know that what Samuel is experiencing is so much greater than we could even imagine. Something I long for so deeply.
After our second outrageously expensive meal of hotdogs...after watching the spectromagic parade, cool
show on Cinderella's castle, and fireworks, we gave heartfelt hugs and said goodbye to our precious Texas friends. We had had a delightful day, and although exhausted and worn, it was difficult to say goodbye.

Saturday, February 19, 2011

Five Points of Life 2011

Today marked our second annual participation in the 5 Points of Life Kids Marathon, and it was just as fun and amazing as last year. Let me refresh the basis of this Kids Marathon again...our school (and many of the other schools here) have a "Morning Mile" program taking place each morning. Essentially, a track at the school opens up each morning about 30-45 minutes before school starts where parents can drop their children off early to run or walk until school starts. At our elementary school, the kids get a "foot charm" to add to their appointed silver necklace for every 5 miles they run (or 20 laps around the track). It is a wonderful program of exercise for our children, and they all love the incentive of being able to add "feet" to their necklaces and wear them around their neck during school. (Here is a picture of a "foot necklace". This is one of the girls' friends, who is also a fellow 1st grader. In counting all the feet, she has run 105 miles during the morning mile program since the first of the school year.)
Anyway, the kids are supposed to tally at least 25 miles from the start of the school year from running either at school or home until this point in the year to participate in the Kids Marathon. It is all to promote exercise and health in the lives of our younguns. (While Abby did indeed get more than 25 miles during morning mile, Emma did not...but I enrolled her regardless. She's been begging to do this for a year.) Anyway, this race was 1.2 is supposed to be the last leg of each kid's "marathon" for the year, as 25 previous miles plus today's 1.2 would equal a full marathon.
The 5 Points of Life Marathon is also a fundraiser for Life South, our local blood bank. In knowing that Nate has a disease where his life will more than likely rely on blood products from others at some point, I try to do everything I can to support our local blood bank by giving blood somewhat regularly and participating in these fundraising activities.
The kids love this race! We always have a really good representation from our school show up, and it is always a blast to get all the Talbot kiddos together before the race. Being around Talbot for almost 2 years now, Emma also has her group of friends. She runs with them during morning mile and hugs them all if she sees them in the halls during our volunteer times...I secretly think they all love her because she is younger and quite a bit smaller than them...a mascot, of sorts. But she loves them all and charms everyone each time she sees them. I have very little worries of her starting at this school in kindy next year.
The big kids did run quite fast to try to get to the front of the line. Emma kept up with them for about 1/4 mile then quickly ran out of steam. She spent the rest of the race running, then walking, then running, walking and complaining of multiple leg, toe and stomach pains the last half of the way. But she ran with gusto once she spotted the finish line, and I am so proud of my girl with the really short legs who finished the race. I am also proud of my sweet oldest who finished quite a ways in front of her sister. This race is quite an accomplishment!
It was a great morning as a family...and our newest temporary family member, Noah. We have had the wonderful privilege of keeping Noah each evening and night for the past couple of weeks while his sister is in the hospital here at Shands. They are from Louisiana, and Abigail (Noah's sister) came to Shands for a gastric pacemaker. Unfortunately, the placement was met with multiple complications, and this dear family has been stuck here for 2 weeks and counting. Noah has been such a blessing, as we have witnessed how God can bless an 11 year old child with amazing resilience and adjustability in difficult circumstances. We have grown to love Noah and his family during these past couple of weeks, and I admit that I will indeed be so sad when he heads home to Louisiana, though the happiness in that will be that his sister is well enough to head home. Thankfully, they will more than likely be back once or twice a year for a while for clinic appts. I know I have said it before, but it is truly exhilarating the people you meet and the relationships you form through a journey that you would have never wished to encounter.

Wednesday, February 16, 2011

Mercy in Trials

Jay and I lived in Athens, GA for almost 4 years before we moved to our current home of Gainesville, FL. Before moving, we were under the pastorship and teaching of a dear man of God for a short time. Elder Dolph Painter is a wonderful friend and brother in Christ who has endured many trials and triumphs in his life. He is the father of 5 precious children, and his insight on biblical parenting is something we should all strive to reach in our own families.

We recently received a book in the mail titled "Daily Meditations", written by this dear man. Each calendar day showcases a short article to read...incredible, thought-provoking messages that speak volumes to our minds and hearts. This book has already been an incredible blessing in my life, and I look forward to reading more. With permission from Elder Dolph, I have included the message for today, as it helps direct our attitude in regards to the trials in our lives:

"My family and I were recently discussing the tribulations of the prophet Jonah. We tried to imagine having seaweed wrapped around our heads and sloshing around in digestive juices for three days. I really dramatized Jonah’s situation and then read, Jonah was vomited on dry land - Jonah 2:10.

My youngest son said, "I know I am suppose to look for good in all things, but I do not see how Jonah’s trial could have been any worse." My son was recalling a lesson I recently taught on being thankful in all things, what Polly Anna called the glad game. In an innocent manner, he was questioning that teaching.

For a moment I wondered how Jonah’s case could have been any worse. I thought he could have been in the fish’s belly for four days but desired something with a little more punch, for I was dealing with a middle school student. Then it came to me, the Lord could have sent Jonah out the back door. If Hannah and David could go there (1Sam 2:8, Ps 113:7) why can’t I? My son busted a gut. My wife busted my knee.

I may be exaggerating my wife’s reaction, but I am not exaggerating the Lord’s mercy, even in judgment. I pray we can speak as David, …all thy waves and thy billows are gone over me. Yet the Lord will command His loving kindness in the daytime, and in the night His song shall be with me, and my prayer unto the God of my life - Ps 42:7-8.

Bear the trial, glory in infirmity, and faint not is the advice given in 1Co 10:13, 2Co 12:8-9, Heb 12:5-8. Relative to tribulation, the Lord knows what we need, when we need it, and how much we need. Jonah did not trust, but after 72 hours was found saying, "Salvation is of the Lord" (Jonah 2:9), which is where we all need to be. Salvation is of the Lord. Amen."

For more articles, please visit Moriah Church's website here.

Tuesday, February 15, 2011

The sweetest wittle voices

I often watch little videos of Abby and Emma singing and talking when they were 2 and 3 years old. I forget how adorable and squeaky their voices are during that age, and it has made me want to get more of Nate talking and singing during this precious age. They change so fast.

Thursday, February 10, 2011

Pre-K...with a twist

If I were to list everything that is considered "abnormal" with Nathan's body...that is, everything that has been formally diagnosed, not even mentioning those "things" that docs think may also be happening but haven't quite hit the gavel and diagnosed them quite yet...most of you would not believe it. Nathan has something abnormal in almost every organ system in his little body. And yet, his issues pale in comparison to so many other mito kids out there fighting this battle. This disease wreaks havoc on their little bodies all while they remain looking "so good" on the outside. That's why I say that most of you would not believe how much Nate's body suffers...because he does indeed look so good most of the time.
We have been given troubling news about Nathan's health for the entirety of the almost 3 years that he has been alive. Some days, the new information is hard to swallow...while other days, it rolls off our backs with no trouble. I explain to others that sometimes it feels that we have been medically shell-shocked...already facing some of the toughest circumstances, there isn't much anyone can tell us that can shake us up that we haven't already been told before.So when Nate had a formal evaluation with our school system last week and had some areas where he was clearly developmentally delayed, I was shocked at how much it seemed to tear at my heart. The phrase "developmental delay" has been written all over much of Nathan's medical information over the past 3 years. Honestly, I have rolled my eyes at that phrase thinking "My kid is NOT developmentally delayed." Sure, he has had PT since he was 6 weeks old and OT for a year and a half...but he is so smart! I am ashamed to say that it took two recent evaluations for me to finally realize that developmental and cognitive abilities are too completely different things...and yes, my son is a bit developmentally delayed.
The great news is that from the intelligence parts of the tests, Nathan scored way past his age. He is very bright and shows that in his language skills and knowledge of many other things. Anyone who has ever seen him work on an iPad will back me up on his incredible intelligence. However, he is quite behind in fine motor skills. His visual motor skills are landing in the 16%, which puts them at around the range of a 25 month old. He can not cut with scissors, string beads on a string, stack 8 blocks without them falling, or dress and undress himself. His fine motor skills are simply not refined enough to be able to complete these tasks. He also can not physically show people that he is 2 or 3 years old by holding up his fingers. He can isolate his pointer finger, but his hands are too weak and hypermobile to be able to keep 2 or 3 fingers in the air while holding down the rest. I would have never known this until recently. Watching your child being intricately critiqued on a developmental level is a bit difficult.

All of that said, we have had some amazing things happen lately as well. All of the evaluations as of late have been because Nathan is aging out of our early steps program. When the child turns 3, they are then turned over to the school system and usually integrated into a pre-k program at a local public school for teaching and therapies. There is a different plan for Nate though. Through the school system, Nathan has been labeled as a "medically fragile" child. In all honesty, I cringe every time I see or hear those words in regards to him. I do not see my son as being "medically fragile". For those who know Nate, unless he is sick, the word "fragile" doesn't seem to fit that rumble, tumble boy at all. I can introduce you to loads of other mito kids I know that are medically fragile, but I do not put Nate in that camp quite yet. I do see him as "medically complicated", but like I said above, he is quite complicated in a medical sense. Barring the continuous oxygen and multiple daily meds, Nathan is susceptible to rapid and serious decompensation with even minor illnesses. We have seen that many times. We have also seen the destruction that major illnesses have on his damaged organ systems long-term. When Nate gets sick, it is always scary...we never know which way he will go or if he will have lasting effects from it. On top of that, he has daily exhaustion that is unlike most 3 year olds. There are many days where he will wake at 7 and go back down for a 3 hour nap at 9. Some days, he still takes 2 naps a day. And then some days, he runs around like a maniac on caffeine. It really all changes day-to-day.
Due to all of the above and everything in between, it has been decided between us, his caretakers (therapists, docs, etc), and the school system that the hospital/homebound program will work best for Nathan during this time. This placement will last indefinitely, due to his medical diagnoses and issues, but we can always reassess the situation if he expresses a desire to attend school in the future and is medically stable at that time. He has been approved for 6 hours of instruction a week at this age, but there is no way he would ever last that long each week with structured activities. So for the time being, we are starting out with 3 hours a week...1 hour for 3 days a week. His teacher is a Pre-K teacher from a local elem school here and has been praised numerous times by our EP team. I can not wait to meet her in a couple of weeks.I can't help but feel that a chapter of our lives is closing. Nate is no longer seen as a baby, but a preschooler. We are having to say goodbye to those in early steps that we have welcomed into our home and loved for the past year and a half and will have to welcome and get to know new ones.

"This is a journey". That's the phrase that has popped into my head numerous times today. It's a journey that is difficult and rewarding...sad and exhilarating...heartbreaking and comforting. It's not a bad journey...but you can't necessarily call it a good journey all the time either. It just that...a journey.

Tuesday, February 8, 2011

Baby Names

I love hearing my children have conversations with each other. Traveling through town tonight, the topic of choice was what the kids would name their children when they grew up...

Abby: I'm going to name my girl Lisa, and my boys will beeeee (thinking).....
Emma: Well, I'm going to name my kids John and Joseph and Mary...
Me: Hmmm, nice biblical theme you have going there.
Emma: Oh, I forgot one. My other girl will be named Trixie.
Me: Biblical with a side of raunchy. Yep, sounds a little like your style.
Nate: I not gonna have no girls. I gonna have a BOY. His name is Kitty.
Me: Yeah, I'm sure your wife may veto that one.

Monday, February 7, 2011

An oldie, but goodie

I did this same setup for a shot with Abby when she was about Nate's age. It was inspired by a photographer from Britain, if I remember correctly. I just love it. All of my kids have loved books and will sit for eons while someone reads to them. This shot seems to fit them all well. (Too bad I forgot to take one of Emma around this age...typical middle child syndrome.)

Thursday, February 3, 2011

The oldest 1st graders you'll see

Today was Abby's 100th day of school for the year. In honor of the monumental occasion, the kiddos (who usually abide by a fairly strict dress code of collared or school-sponsored shirts and plain pants/skirts/bermuda-type shorts) were allowed to dress up like they were 100 years old. This is the age where the kids are starting to become aware of social acceptance, so they are getting a little less eager to dress up in silly outfits, but I am excited that a lot of them decided to have a little fun in this endeavor. Due to the serious storms this morning, I didn't have a chance to take a good picture of Abby in her gear. I did, however, get a little video of her right before heading to school...of which I shall upload when the laundry, finances, and other household chores are done. (Read that: maybe never)

My sweet little Granny Abby headed to class sporting some awesome curlers, as she was past due of getting her hair did at the salon a'la oldpeople. Her spectacles sat on the end of her nose most of the day because her vision is failing her in her ripe age, and a cane sat beside her desk to help her maneuver around the room without breaking a hip. Her shawl kept her warm, along with the house slippers she never leaves home without, and she completed the outfit with a nice pair of knee-high panty hose that wouldn't quite stay up all the time. I tried desperately to convince her to pull an oxygen tank behind her in our tank cart and wear a cannula, but she had to draw the line somewhere. I still believe that would have totally made the entire outfit believable though.

The only problem of the day was a minor wardrobe malfunction at various times. It seemed that her shawl would catch onto her skirt and almost show a hint of her Depends. I had to keep prompting her "Granny, keep yo' skirt down. You're showing your business." To which she would give me the stink-eye through extra large eyes peering out of her spects.
The day was a lot of fun, jammed full of "100 day" activities. My duties as a volunteer was to oversee the 100 day Olympics where they would throw javelins (straws), shot puts (cubes), and do a broad jump and see who could get closest to 100 cm and 100 inches each time. They also had a race with 10 dimes on a spoon, which Granny is so happily showcasing on the above pic. They participated in numerous other stations throughout the morning and all came home with copious amounts of memories of how learning can really and truly be a complete blast.

Granny came home, took out her curlers, peeled off her knee highs, soaked her feet in an Epsom bath, and took copious amounts of Metamucil with her daily intake of prunes and bran muffins. It was a big day for a little old lady.

Tuesday, February 1, 2011

Just a month late...the last day we were in Kentucky

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