Do I truly want to grow in Christ more than I want to have a comfortable life? Hebrews 5:8 says that Christ learned obedience from what he suffered. Is it more important to me to learn obedience through this suffering God has allowed our family to endure? If it could all go away tomorrow, would I miss this opportunity God has given me to grow? James says to count it all joy whenever we face various trials, knowing that the testing of our faith produces endurance. Do I really want the things that are eternal, or do I prefer the comforts of this world? Am I willing to depend on others? Am I content with sacrificing my independence? Philippians says that Jesus became obedient to the point of death. Do I share the same level of commitment?
-Suzanne Kearney, mom of Timothy, sweet little boy with a LM
Timothy's Journey
Wednesday, July 21, 2010
Saturday, July 17, 2010
The Ambassador!
As some of you already know, our family is raising money and running (well, maybe walking) :) in the Covey Run for Children's Hospital next month benefiting Seattle Children's Uncompensated Care fund. This awesome foundation is (and will always be) very close to our hearts! Late last December after our medical bills continued to pile up, I finally swallowed my pride and applied for the charity. We were shocked to find out we were approved to receive help from this fund. In a nutshell, whatever our insurance doesn't pay, this fund picks up. They paid our $2,000 copay already this year.
With our middle-class income we thought for sure we wouldn't be approved... but as it turns out, it is specifically designed for families like ours. Such an enormous weight lifted.So we wanted to participate in the run to give back and help other families like ours.
We initially set our fundraising goal at $1,000 and sent out an e-mail and posted on facebook that we were raising money. We reached our goal in 5 days! So we increased our goal to $1500 and finally $2000 in a matter of two weeks. We still have a month to go, and right now we are sitting at $1370! Thank you sooo much friends and fam!
On Wednesday I received an e-mail from the Executive Director of Volunteers and Guilds at Seattle Children's Hospital, asking us if Noah will be the Ambassador for the Race!!! Our sweet little Noah!
Every year this "Race Ambassador" is featured on the race website with their story, and we will briefly telling Noah's story (in 1-2 minutes) at the startling line of the race. What an awesome opportunity to tell of God's miracles and mercy!
We are so honored and proud of Noah! It was so funny, this morning my mom was watching the kids and said he was pretending a calculator was his phone, and walking around the house with his head tilted holding this calculator to his ear. We think he's got lots of calls to make now that he's an ambassador-- lots of contacts to make now that he's a pretty big deal! ;)
We would love it if YOU would join us for this race and big deal for Noah! You can register at www.runforchildrens.org (this is the website that will have a tab specifically saying "Noah's Story", but probably won't show it for at least a week). It's $30, including your t-shirt and timing chip, plus we will be handing out "team noah" shirts if you're interested! There is a 5k, 10k, and Children's "dash", race is in Woodinville.
If you don't live in the Seattle area but still want to support our fundraising efforts, you can donate at www.firstgiving.com/supportteamnoah and it goes straight to the Uncompensated Care Fund (plus its a tax write-off)! No pressure of course!
MRI Results!
Noah's MRI went well! The anesthesiologist didn't even have to intubate Noah, which is a great sign that there is just so much more room in there. We are so grateful!
At his long-awaited appointment with Dr. Perkins, the radiologists said there was a new cyst located down his chest near the top of his breastbone. After talking more about it, we remembered that during my pregnancy when we had an MRI, they did say there was a cystic pocket on his chest, but then this cyst didn't show up on the MRI he had at 4 months old. Either they didn't notice it, or because its fluid-filled it could've just been really small during that MRI. Regardless of when it formed (recent or not), they weren't concerned about it. It is not in a place where it can hurt anything.
Other not-so-great news is that the swelling in his big cheek that pushes his top lip to the side and creates an asymmetric smile, may not be fixable with surgery. Dr. Perkins said he would try and do a little face lift during surgery that will help a little, but his smile may never be "perfect". What does a perfect smile look like anyway? I love Noah's little Clint Eastwood smile!!! (so does his dad, of course!)
Besides that, it was all great news! His lymphatic malformation in his cheek is growing proportionately with him, and the cysts under his chin have done nothing but get smaller since birth. Praise the Lord. Lots of answered prayers. Dr. Perkins also said...
drum roll...
that Noah is out of the woods for needing a tracheotomy! Unless he got some crazy weird infection, he confidently said he does not anticipate Noah ever needing a trach. What a relief it was to hear those words from him!
I then asked him what his thoughts are with Noah's g-tube and removing it. He said it's our call as parents when we want to remove it, but his conservative answer would be to wait to get through cold and flu season before we take it out. Plus, we are tentatively planning his first surgery next spring, so having the g-tube definitely helps with the healing process and will speed up discharge time after surgery.
Sometimes they have to put g-tubes back in kids, so obviously we to avoid this and aren't in a hurry to pull it out. I asked Perkins how often they have to put tubes back in LM kids (versus g-tube for other reasons like failure to thrive for example), and he said he's never had to put one back in. Awesome news! The biggest challenge with LM kids is just getting them to the point where they are able to swallow and up to par on their nutrition needs. He doesn't suspect anymore LM growth in to his airway or affecting his swallow. Praise the Lord #15,072!
We don't have another scheduled appointment with Dr. Perkins until January, where we will most likely schedule his surgery for early spring. Until then, we ask for continued prayer for Noah to get through cold and flu season with no E.R. visits! :)
I look at Noah, and we are just so incredibly blessed. I can honestly say I don't take a SINGLE DAY for granted with Noah. Every morning I see those fresh eyes and crooked smile, my heart just melts. Almost every meal, I praise the Lord as I watch Noah shovel food in to his mouth. I guess that shows how excited I am that he eats so well, seriously 75% of my pictures of Noah he is sitting in his high chair eating! Hahaha just realized that... but it's a pretty big deal don't you think?!
It's been such a different summer than last. We met my cousins Steve & Laura and their sweet daughters at the park yesterday (who we haven't seen since last summer), and even Laura said I seem so much more relaxed and less stressed than last summer. When you're in the middle of it, sometimes you don't realize how heavy your load is... I've always tried really hard not to be a Debbie downer regardless of my circumstances, and I thought I was doing a good job and fooling everyone that I was not overwhelmed with my life last year. Apparently not! Apparently it was obvious that it was a pretty tough time for me-- easier than '08 when I was pregnant with a horrible prenatal diagnosis, but still pretty pushed to my limits.
As cheesy as it sounds, the overused "footprints" poem is so true-- Christ carries you in those difficult times when you feel so alone and physically and emotionally exhausted. I have no idea how I survived the past year. You never know how strong you are until the storms blow in... or is it how small I am and how big God is? He has definitely shown me a lot about his might, his sovereignty, and most importantly his grace.
Ella climbed to the top of the linen closet and played for about 10 minutes before I realized where she was... my parenting at its best :)
Fun at Poppy's!
At his long-awaited appointment with Dr. Perkins, the radiologists said there was a new cyst located down his chest near the top of his breastbone. After talking more about it, we remembered that during my pregnancy when we had an MRI, they did say there was a cystic pocket on his chest, but then this cyst didn't show up on the MRI he had at 4 months old. Either they didn't notice it, or because its fluid-filled it could've just been really small during that MRI. Regardless of when it formed (recent or not), they weren't concerned about it. It is not in a place where it can hurt anything.
Other not-so-great news is that the swelling in his big cheek that pushes his top lip to the side and creates an asymmetric smile, may not be fixable with surgery. Dr. Perkins said he would try and do a little face lift during surgery that will help a little, but his smile may never be "perfect". What does a perfect smile look like anyway? I love Noah's little Clint Eastwood smile!!! (so does his dad, of course!)
Besides that, it was all great news! His lymphatic malformation in his cheek is growing proportionately with him, and the cysts under his chin have done nothing but get smaller since birth. Praise the Lord. Lots of answered prayers. Dr. Perkins also said...
drum roll...
that Noah is out of the woods for needing a tracheotomy! Unless he got some crazy weird infection, he confidently said he does not anticipate Noah ever needing a trach. What a relief it was to hear those words from him!
I then asked him what his thoughts are with Noah's g-tube and removing it. He said it's our call as parents when we want to remove it, but his conservative answer would be to wait to get through cold and flu season before we take it out. Plus, we are tentatively planning his first surgery next spring, so having the g-tube definitely helps with the healing process and will speed up discharge time after surgery.
Sometimes they have to put g-tubes back in kids, so obviously we to avoid this and aren't in a hurry to pull it out. I asked Perkins how often they have to put tubes back in LM kids (versus g-tube for other reasons like failure to thrive for example), and he said he's never had to put one back in. Awesome news! The biggest challenge with LM kids is just getting them to the point where they are able to swallow and up to par on their nutrition needs. He doesn't suspect anymore LM growth in to his airway or affecting his swallow. Praise the Lord #15,072!
We don't have another scheduled appointment with Dr. Perkins until January, where we will most likely schedule his surgery for early spring. Until then, we ask for continued prayer for Noah to get through cold and flu season with no E.R. visits! :)
I look at Noah, and we are just so incredibly blessed. I can honestly say I don't take a SINGLE DAY for granted with Noah. Every morning I see those fresh eyes and crooked smile, my heart just melts. Almost every meal, I praise the Lord as I watch Noah shovel food in to his mouth. I guess that shows how excited I am that he eats so well, seriously 75% of my pictures of Noah he is sitting in his high chair eating! Hahaha just realized that... but it's a pretty big deal don't you think?!
It's been such a different summer than last. We met my cousins Steve & Laura and their sweet daughters at the park yesterday (who we haven't seen since last summer), and even Laura said I seem so much more relaxed and less stressed than last summer. When you're in the middle of it, sometimes you don't realize how heavy your load is... I've always tried really hard not to be a Debbie downer regardless of my circumstances, and I thought I was doing a good job and fooling everyone that I was not overwhelmed with my life last year. Apparently not! Apparently it was obvious that it was a pretty tough time for me-- easier than '08 when I was pregnant with a horrible prenatal diagnosis, but still pretty pushed to my limits.
As cheesy as it sounds, the overused "footprints" poem is so true-- Christ carries you in those difficult times when you feel so alone and physically and emotionally exhausted. I have no idea how I survived the past year. You never know how strong you are until the storms blow in... or is it how small I am and how big God is? He has definitely shown me a lot about his might, his sovereignty, and most importantly his grace.
Ella climbed to the top of the linen closet and played for about 10 minutes before I realized where she was... my parenting at its best :)
Fun at Poppy's!
Friday, July 2, 2010
Mama Bear
Announcements first:
Noah's MRI has been rescheduled to July 13th, where we will (again) meet with his docs and surgeons to discuss the results! Praying for Noah to stay healthy so anesthesia is as low risk as possible and we can get this darn thing over with!
Also, we still haven't used Noah's tube since May 15th! Well, approximately... I don't remember consciously looking at the calendar and saying, this is the last time I'll feed him through his tube...:) But he is just eating so much I have to believe he is gaining weight! I am going to take him in to be weighed next week to make sure he is gaining, even if its a little bit I will be happy. He is definitely getting taller, but he is still a slim little man!
Blabbing second:
It's been interesting for me to reflect back on the way that I have reacted toward strangers when they look at Noah. At first, when he was so little, anytime we'd go out he'd either be in his car seat or in his baby bjorn, so nobody really said anything because they didn't see him very well. Then, as he got bigger and people started noticing that he looked different, I never wanted anyone to feel bad for looking because I know people are naturally curious, and I saw it as an opportunity to tell Noah's story. I liked talking about the miracle of Noah's life and how blessed we are with his progress, sweet temperament, etc.
Since spring hit this year, we spend a lot of time at the park and around other kids, and I've noticed lots of laughing, pointing, blunt little kids saying, "THAT BABY HAS REALLY BIG CHEEKS!", and for the most part it was harmless, but it definitely made me sad thinking what my son will have to go through in his life because he looks different. Just a little sad. Its easy for me to tell the kids "that's just the way God made him!" and the kids smile and run along.
But lately, I've started to get pissed at people and protective of Noah. Adults and children alike. Noah runs all over the place at the park, Costco, the grocery store... and for some reason I'm noticing lots more stares and whispers, and it's starting to really get under my skin! The mama bear in me just never wants Noah to feel like he is less beautiful than anyone else. He is such a gorgeous boy to me. My mom and I were talking, and we just don't see his big neck and cheek anymore. You look in this sweet boy's eyes and just melt!
I am okay with him being different, he obviously has a pretty important purpose in this life, and he has blessed our lives and changed us in so many ways. Like I've said in previous posts, I don't want to erase his LM and try to hide it like it never happened; it is a part of his story, even though it is not a part of him. I just never want him to feel like he is worth less than anyone because he simply LOOKS different!Because it is by these differences that God opens a door for grace.
I digress.
I'm just really struggling with how to deal with people and their reaction to Noah. One of my good friends Alexa advised me that it would make sense to approach it the way I would want Noah to react to it in the future. If I want him to smile at people and make them feel comfortable, and show them that his spirit has not been defeated by his circumstances, then that's how I should react.
But, I know that sometimes, Noah just might feel like punching people in the face for staring, because I sure do! I know this is totally not how Christ wants me to react! He is molding me so much with this trial in my life that you'd think I'd have a little more emotional and spiritual maturity at this point! Ideally, I want to react in a sweet way to people. But inside, I can't help that my heart is breaking for Noah. Even though I know it is making him a better, stronger man.
I'm sure this is part of the process that every parent of a child that looks or acts different has to go through, and I know the Lord will carry me through it. I'll probably react the wrong way a lot of times and eventually, be able to brush it off and not be so saddened by it. I better toughen up soon because I totally glared at like five people in Costco last week and I felt so guilty after!
Thanks for listening! What do you, my dear family and friends, recommend I do to get through these bitter feelings toward people, and how can I better react to them??
Noah's MRI has been rescheduled to July 13th, where we will (again) meet with his docs and surgeons to discuss the results! Praying for Noah to stay healthy so anesthesia is as low risk as possible and we can get this darn thing over with!
Also, we still haven't used Noah's tube since May 15th! Well, approximately... I don't remember consciously looking at the calendar and saying, this is the last time I'll feed him through his tube...:) But he is just eating so much I have to believe he is gaining weight! I am going to take him in to be weighed next week to make sure he is gaining, even if its a little bit I will be happy. He is definitely getting taller, but he is still a slim little man!
Blabbing second:
It's been interesting for me to reflect back on the way that I have reacted toward strangers when they look at Noah. At first, when he was so little, anytime we'd go out he'd either be in his car seat or in his baby bjorn, so nobody really said anything because they didn't see him very well. Then, as he got bigger and people started noticing that he looked different, I never wanted anyone to feel bad for looking because I know people are naturally curious, and I saw it as an opportunity to tell Noah's story. I liked talking about the miracle of Noah's life and how blessed we are with his progress, sweet temperament, etc.
Since spring hit this year, we spend a lot of time at the park and around other kids, and I've noticed lots of laughing, pointing, blunt little kids saying, "THAT BABY HAS REALLY BIG CHEEKS!", and for the most part it was harmless, but it definitely made me sad thinking what my son will have to go through in his life because he looks different. Just a little sad. Its easy for me to tell the kids "that's just the way God made him!" and the kids smile and run along.
But lately, I've started to get pissed at people and protective of Noah. Adults and children alike. Noah runs all over the place at the park, Costco, the grocery store... and for some reason I'm noticing lots more stares and whispers, and it's starting to really get under my skin! The mama bear in me just never wants Noah to feel like he is less beautiful than anyone else. He is such a gorgeous boy to me. My mom and I were talking, and we just don't see his big neck and cheek anymore. You look in this sweet boy's eyes and just melt!
I am okay with him being different, he obviously has a pretty important purpose in this life, and he has blessed our lives and changed us in so many ways. Like I've said in previous posts, I don't want to erase his LM and try to hide it like it never happened; it is a part of his story, even though it is not a part of him. I just never want him to feel like he is worth less than anyone because he simply LOOKS different!Because it is by these differences that God opens a door for grace.
I digress.
I'm just really struggling with how to deal with people and their reaction to Noah. One of my good friends Alexa advised me that it would make sense to approach it the way I would want Noah to react to it in the future. If I want him to smile at people and make them feel comfortable, and show them that his spirit has not been defeated by his circumstances, then that's how I should react.
But, I know that sometimes, Noah just might feel like punching people in the face for staring, because I sure do! I know this is totally not how Christ wants me to react! He is molding me so much with this trial in my life that you'd think I'd have a little more emotional and spiritual maturity at this point! Ideally, I want to react in a sweet way to people. But inside, I can't help that my heart is breaking for Noah. Even though I know it is making him a better, stronger man.
I'm sure this is part of the process that every parent of a child that looks or acts different has to go through, and I know the Lord will carry me through it. I'll probably react the wrong way a lot of times and eventually, be able to brush it off and not be so saddened by it. I better toughen up soon because I totally glared at like five people in Costco last week and I felt so guilty after!
Thanks for listening! What do you, my dear family and friends, recommend I do to get through these bitter feelings toward people, and how can I better react to them??
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