My friend Katie Wetherbee interviewed me a while back and is now posting the interview in parts over at her blog. I wanted to share the link so you could head over to her blog. It was encouraging to me to answer questions, rather than write or speak about it as I usually do. Something freeing about the process for me, even five and a half years later.
Katie does a lot of things, but one is to help families of children with special needs make quality connections within the local church.
Did you know many families with disabled children do not attend church because either the building itself is not accessible or because the body of people there are either unwilling or not educated on how to care for their children during a one hour service?
Are churches only for families with 2.5 kids who have no allergies, disabilities, or other special needs?
That's like saying the church is only for blond haired, blue eyed people from a certain region of Europe...and we all know how that worked out!
Jesus came to seek and save the lost.
Ummmmm. That would be EVERY. SINGLE. PERSON. ON. EARTH.
Do you have to go to church in order to have a relationship with the Lord?
Ummmmm....NO! Plenty of churches around the world are welcoming, loving places where anyone would feel part of the fold. And then, there are plenty of others out there that Jesus wouldn't even set foot in because they are just too darned perfect...I would encourage you not to go to those, anyway.
Sorry, I'm off on a tangent.
If our son Noah had lived, he would have continued to have special needs, just as he did in the hospital with a staff of 40 loving nurses and countless doctors and specialists.
In real life, outside the hospital, it takes a community of support and encouragement to come around families of children with different disabilities. Heck, it takes a community of support and encouragement to come around EVERYONE.
*If you or someone you know would like to know more about getting your church up-to-date with how to lovingly come alongside families of children with special needs, check out: www.keyministry.org
Showing posts with label hospital life. Show all posts
Showing posts with label hospital life. Show all posts
Monday, May 21, 2012
Wednesday, May 16, 2012
Guest Blogging
Today you will find me at "Diving for Pearls."
Katie Wetherbee is a new friend, who is actually an old friend. And by "old" I mean, she prayed for us during our journey with Noah through hearing of his blog. Earlier this Spring we were able to email back and forth and finally share ear to ear. I wish we lived where I could meet her face to face.
One night I sat and read through the story of Katie and her family. She has it neatly organized on her blog, so it's easy to do. (Sorry. You won't find that here. I'm still working on my organizational skills.) It was like a book I could not put down, reading her words, her experiences and emotions, and being able to picture the hospital life she lived with her daughter because of our personal experience.
Katie is a beautiful woman and a wonderful new friend! I love her heart and the core of the ministry she carries out on a daily basis. Her blog states, "Helping children with special needs thrive at home, school, and church." She is the Director of Education for Key Ministry. This mission of Key Ministry is "to equip churches to welcome and include children and families affected by hidden disabilities in all aspects of the life of the church." The website has great insight and resources to educate oneself and learn more about how we as a body of believers can build bridges and welcome every person into the walls of an actual church, and into the arms of a loving community.
As a mother, she is facing the out-of-state drive and delivery of her first born to college next fall, with a younger one still working through high school. I have one in diapers still and another just exiting 4th Grade in two weeks. We are in two very different phases of life, but I believe we all have much to learn from one another.
I hope you will head over to "Diving for Pearls" where Katie is launching the first of a series called "Messages from Moms," where yours truly is first out of the gates.
My heart in being part of this is to encourage families far and wide as they journey through parenting, no matter how it looks. Our son Noah passed away, but the time he was on this Earth I would say he had some very special needs. Had he lived, he would have been "labeled" as such and it would have been, and is, my heart, to know him intimately and love him especially the way he was, understanding his needs to help him flourish. Just as I try to do with my other two.
Katie Wetherbee is a new friend, who is actually an old friend. And by "old" I mean, she prayed for us during our journey with Noah through hearing of his blog. Earlier this Spring we were able to email back and forth and finally share ear to ear. I wish we lived where I could meet her face to face.
One night I sat and read through the story of Katie and her family. She has it neatly organized on her blog, so it's easy to do. (Sorry. You won't find that here. I'm still working on my organizational skills.) It was like a book I could not put down, reading her words, her experiences and emotions, and being able to picture the hospital life she lived with her daughter because of our personal experience.
Katie is a beautiful woman and a wonderful new friend! I love her heart and the core of the ministry she carries out on a daily basis. Her blog states, "Helping children with special needs thrive at home, school, and church." She is the Director of Education for Key Ministry. This mission of Key Ministry is "to equip churches to welcome and include children and families affected by hidden disabilities in all aspects of the life of the church." The website has great insight and resources to educate oneself and learn more about how we as a body of believers can build bridges and welcome every person into the walls of an actual church, and into the arms of a loving community.
As a mother, she is facing the out-of-state drive and delivery of her first born to college next fall, with a younger one still working through high school. I have one in diapers still and another just exiting 4th Grade in two weeks. We are in two very different phases of life, but I believe we all have much to learn from one another.
I hope you will head over to "Diving for Pearls" where Katie is launching the first of a series called "Messages from Moms," where yours truly is first out of the gates.
My heart in being part of this is to encourage families far and wide as they journey through parenting, no matter how it looks. Our son Noah passed away, but the time he was on this Earth I would say he had some very special needs. Had he lived, he would have been "labeled" as such and it would have been, and is, my heart, to know him intimately and love him especially the way he was, understanding his needs to help him flourish. Just as I try to do with my other two.
Tuesday, May 15, 2012
Thoughts on Dying and Living
As I sat across my davenport from a friend, a fellow bereaved mum, I listened to her heart and shared her tears as she told the stories of losing 3 of her grown children. I will not share her story because it is hers to share...
One thing we talked about, though, was the "How?"
Yesterday as Emily and Ryan and I left a store, there were several emergency vehicles in the next parking row, helping whomever it was who needed help. There were employees of the store directing traffic in the opposite direction of the situation. We headed to our car, and as we walked, we prayed for the person laying on the ground. We also prayed for the rescue team as they cared for the person in need.
As we backed out of our spot and headed up the row I literally had to wait for a woman steering her cart serpentine like down the center of the driving lane, craning her neck, not watching where she was going, but trying to see what was going on in the other parking row.
Really? Really?
I know the woman was curious as to the "What?" in the situation, like what happened? or how did this happen? We are curious people. And we are not bad or wrong for wanting to know.
Heck, when Noah was in the hospital, I asked the question, "But WHY?" for 5+ months. Not "Why?" like, why me? why my son? but, "Ok, so his test results are inconclusive...he is dying...his DNA is normal...but again, he's dying...why?"
Remember "Speed" and the vanilla flavored acting of Keanu Reeves? The people were all on the bus yelling, "We're all gonna die! We're all gonna die!"
I think of this scene, and many like it being played out in real life around the world under different circumstances, and I do wonder if this is the first realization a person in the scenario has had that they, indeed, are going to die.
Everyone. Is. Going. To. Die.
But it's the "How?" that often catches us off guard, sweeps our legs, and leaves us feeling as if it came out of nowhere. Because we weren't ready for it?
And it's the "When?", too. My friend said she asked God about the timing of her children's deaths. One in his 20's, the other two teenagers. My son was 7 months old. My friend's dad was 61. My friend's daughter 1 hour. My friend's mom in her early 40's. My Grandmas in their 90's. My father-in-law, 49. My friend's husband, 34.
When we read "90" in the obituaries, we don't really ask why? We may ask how? but, for the most part, their death isn't the result of a skiing accident, though anything is possible.
The nature of us, though, wants to know the how? and why? when we read the other ages.
And we are taken aback. Struck with disbelief in some cases. Sorting feelings of unfairness and pounding our fists about timing. "A life cut short." "Such a tragedy!" "They had so much more life to live..."
Please understand, I am NOT saying He is the instigator of the how? Please read Job for further insight here. I personally believe God left the book of Job in the Bible on purpose so we could see just how sick and twisted the Devil really is at trying to tear our hearts away from the Unconditionally Loving God who created us. (This will have to be another post entirely.)
What the heck is my point here?
Well, we can live the rest of our lives broken, torn, our hearts tragically ripped open because of our inability to fully ever comprehend the how? and the why? and the when?
Or, we can live the rest of our lives profoundly impacted by the beautiful people we once knew who have gone before us into everlasting life.
And we can carry their hearts, passions, gifts, character, and strengths in our lives as we choose to be better people because of them.
We can celebrate their heroics. We can allow smiles to grace our faces, even in the midst of sorrow, as we remember something funny they once did, and not feel guilty about it. We can rejoice that no matter the amount of time, whether in pregnancy or 50+ years later, we were once a "Mom" and will ALWAYS be a mom, no matter where our children dwell. It will wear the title, "Bereaved, Grieved, Widowed," and it will have aches, pains, and heart wrenching yearning.
As a bereaved parent, a grieved friend, a person who has kissed death on the lips, I don't want to imagine my life never having known the people I loved who have died.
*In memory of men I never knew: Luke Sheets, Stephen Luth, Garrett Coble, and Austin Anderson
*In honor of Hannah Luce AND all the surviving families, friends, and loved ones: we are constantly praying for you...He still has you here on purpose. Never give up hope!
One thing we talked about, though, was the "How?"
Yesterday as Emily and Ryan and I left a store, there were several emergency vehicles in the next parking row, helping whomever it was who needed help. There were employees of the store directing traffic in the opposite direction of the situation. We headed to our car, and as we walked, we prayed for the person laying on the ground. We also prayed for the rescue team as they cared for the person in need.
As we backed out of our spot and headed up the row I literally had to wait for a woman steering her cart serpentine like down the center of the driving lane, craning her neck, not watching where she was going, but trying to see what was going on in the other parking row.
Really? Really?
I know the woman was curious as to the "What?" in the situation, like what happened? or how did this happen? We are curious people. And we are not bad or wrong for wanting to know.
Heck, when Noah was in the hospital, I asked the question, "But WHY?" for 5+ months. Not "Why?" like, why me? why my son? but, "Ok, so his test results are inconclusive...he is dying...his DNA is normal...but again, he's dying...why?"
Remember "Speed" and the vanilla flavored acting of Keanu Reeves? The people were all on the bus yelling, "We're all gonna die! We're all gonna die!"
I think of this scene, and many like it being played out in real life around the world under different circumstances, and I do wonder if this is the first realization a person in the scenario has had that they, indeed, are going to die.
Everyone. Is. Going. To. Die.
But it's the "How?" that often catches us off guard, sweeps our legs, and leaves us feeling as if it came out of nowhere. Because we weren't ready for it?
And it's the "When?", too. My friend said she asked God about the timing of her children's deaths. One in his 20's, the other two teenagers. My son was 7 months old. My friend's dad was 61. My friend's daughter 1 hour. My friend's mom in her early 40's. My Grandmas in their 90's. My father-in-law, 49. My friend's husband, 34.
When we read "90" in the obituaries, we don't really ask why? We may ask how? but, for the most part, their death isn't the result of a skiing accident, though anything is possible.
The nature of us, though, wants to know the how? and why? when we read the other ages.
And we are taken aback. Struck with disbelief in some cases. Sorting feelings of unfairness and pounding our fists about timing. "A life cut short." "Such a tragedy!" "They had so much more life to live..."
If God really is Who He says He is, and He really does know the number of our days here on Earth, and He designed us with beauty in mind, and a purpose, and for a display of His splendor...well, this causes me to believe He isn't taken aback by the how? or the when?
Please understand, I am NOT saying He is the instigator of the how? Please read Job for further insight here. I personally believe God left the book of Job in the Bible on purpose so we could see just how sick and twisted the Devil really is at trying to tear our hearts away from the Unconditionally Loving God who created us. (This will have to be another post entirely.)
What the heck is my point here?
Well, we can live the rest of our lives broken, torn, our hearts tragically ripped open because of our inability to fully ever comprehend the how? and the why? and the when?
Or, we can live the rest of our lives profoundly impacted by the beautiful people we once knew who have gone before us into everlasting life.
And we can carry their hearts, passions, gifts, character, and strengths in our lives as we choose to be better people because of them.
We can celebrate their heroics. We can allow smiles to grace our faces, even in the midst of sorrow, as we remember something funny they once did, and not feel guilty about it. We can rejoice that no matter the amount of time, whether in pregnancy or 50+ years later, we were once a "Mom" and will ALWAYS be a mom, no matter where our children dwell. It will wear the title, "Bereaved, Grieved, Widowed," and it will have aches, pains, and heart wrenching yearning.
But what if we had never met them in the first place?
As a bereaved parent, a grieved friend, a person who has kissed death on the lips, I don't want to imagine my life never having known the people I loved who have died.
My life is richer because of them.
And in pain and grief, there is healing knowing each person we meet on our way truly is a gift to us from the very hand of God, no matter how long they are called to walk the Earth.
*In memory of men I never knew: Luke Sheets, Stephen Luth, Garrett Coble, and Austin Anderson
*In honor of Hannah Luce AND all the surviving families, friends, and loved ones: we are constantly praying for you...He still has you here on purpose. Never give up hope!
Sunday, February 05, 2012
Trekking Around the World
Remember this?
It's been a while. I wouldn't expect you to, but I sure do. One night, 5 years ago last November, we had gotten some yummy Chinese take-out and were sitting in Noah's room at The Children's Hospital. As we finished up and started cracking open our fortune cookies, I grabbed one and said, "This one's for Noah." If you can see in the picture, that's medical tape, the kind that used to keep tubes and crap attached to my sweet boy. We used it for other things, as you can see.
At the time I remember thinking, "Oh how great it would be if You would heal Noah, God, and we could go all over the world (a lifetime dream of mine) and tell everyone of Your faithfulness, love and power." This was my initial response to reading, "You will step on the soil of many countries."
It's because I had seen myself with a grown son...remember? And so I naturally thought it was Noah...since he was my only son at the time and all. And Noah did step on the soil of many countries, so to speak, just not physically with his two sweet little feet. His blog hit every continent before he died, but that wasn't quite what I had been thinking...
Well, fast forward 5 years. This post isn't about Noah. It's about how my heart leaps out of my chest every time I see pictures of a sweet mama and her boy, so very much in love, who are on a journey. It's about how I can't get them out of my mind, not because I want to, but because God continues to put them on my heart, all throughout the day.
I have mentioned him here before, but I'm asking you not to turn away. I KNOW reading about a kid that is dying is nothing less than gut-wrenching. It's HARD. It SUCKS. It's a volume of books filled with descriptive words that can't really describe the heartache. I freaking GET IT! It's why hundreds stopped reading my blog after Noah died. I understand. It's not as fun as Pinterest or Facebook or a hundred million other things.
But I'm literally begging you to let your heart pray for Jarrett, Chelsea, Peyton, Conner and Trek, as they set off on a journey of living life to the fullest, one day at a time.
You see, someone close to them contacted me to pray for them...she had read Noah's blog and couldn't stop thinking about some of the similarities.
Here is where my heart is wrecked. We never wanted Noah to be stuck in a hospital bed his whole freaking life. That was never our dream for him...but because of a whole hellofalotta reasons, we were stuck. There were days I dreamed of stealing him out of the hospital and taking him home...but we couldn't because we didn't have home health care at the time. It was a big mess. The closest I got to showing him the world was this...whoopdefreakingdo!
Anyway, Chelsea's heart is living out what I wished I could have done with Noah.
Am I living vicariously through them? Only the freedom part...I lived all the rest already.
Either way, my heart is crying out for them to RUN, PLAY, LAUGH, CRY, REST, STARE, LISTEN, SING, NUGGLE, SMOOCH, HOLD ON and LET GO all at once.
I pray for God's love to fill every corner of their lives with such fullness that this time in their lives will ever be etched in their hearts.
I hate what they are going through but if I had it to do over, which I don't wish for, but if I could go back, I'd run like hell out of that hospital and live whatever amount of time I had with my boy, free from the beeps and meds and tubes and tests and pokes and drugs and smells and unknowns.
I'd run.
I don't despise what we went through, I do have to say, because 5 years later, I'm grateful to at least have the perspective that life is short. It's time to live, today, right now, to the fullest. Time and the people in our lives are literally gifts from God for our joy.
It's time you, or someone you know, stop holding back.
Hug tighter.
Kiss longer.
Stare at your children.
Laugh your ass off.
Play on the floor with your kids.
Tell your husband you love him.
Tell him you are sorry.
Hold hands.
Turn off your freaking television. Hell, throw the damn thing away.
Forgive.
Stop caring what others think of you.
Trust God sees the bigger picture. Relinquish the control you think you need to have.
Smile.
Listen.
Play.
Dream.
Live in wonder.
Baby Trek Atlas may not physically touch the soil of many countries in his short life time, but the way he's living with his big brothers and mommy and daddy who adore him...well, he's experiencing more love than many do in a lifetime. And, if you spend some time reading his mama's blog, I would venture to guess he'll have you looking around, wondering what matters, and making a few changes and tweaks to what is important.
That's Trek, a 9.5 month old, teaching us a thing or two. That's him stepping on the soil of many countries...
It's been a while. I wouldn't expect you to, but I sure do. One night, 5 years ago last November, we had gotten some yummy Chinese take-out and were sitting in Noah's room at The Children's Hospital. As we finished up and started cracking open our fortune cookies, I grabbed one and said, "This one's for Noah." If you can see in the picture, that's medical tape, the kind that used to keep tubes and crap attached to my sweet boy. We used it for other things, as you can see.
At the time I remember thinking, "Oh how great it would be if You would heal Noah, God, and we could go all over the world (a lifetime dream of mine) and tell everyone of Your faithfulness, love and power." This was my initial response to reading, "You will step on the soil of many countries."
It's because I had seen myself with a grown son...remember? And so I naturally thought it was Noah...since he was my only son at the time and all. And Noah did step on the soil of many countries, so to speak, just not physically with his two sweet little feet. His blog hit every continent before he died, but that wasn't quite what I had been thinking...
Well, fast forward 5 years. This post isn't about Noah. It's about how my heart leaps out of my chest every time I see pictures of a sweet mama and her boy, so very much in love, who are on a journey. It's about how I can't get them out of my mind, not because I want to, but because God continues to put them on my heart, all throughout the day.
I have mentioned him here before, but I'm asking you not to turn away. I KNOW reading about a kid that is dying is nothing less than gut-wrenching. It's HARD. It SUCKS. It's a volume of books filled with descriptive words that can't really describe the heartache. I freaking GET IT! It's why hundreds stopped reading my blog after Noah died. I understand. It's not as fun as Pinterest or Facebook or a hundred million other things.
But I'm literally begging you to let your heart pray for Jarrett, Chelsea, Peyton, Conner and Trek, as they set off on a journey of living life to the fullest, one day at a time.
You see, someone close to them contacted me to pray for them...she had read Noah's blog and couldn't stop thinking about some of the similarities.
Here is where my heart is wrecked. We never wanted Noah to be stuck in a hospital bed his whole freaking life. That was never our dream for him...but because of a whole hellofalotta reasons, we were stuck. There were days I dreamed of stealing him out of the hospital and taking him home...but we couldn't because we didn't have home health care at the time. It was a big mess. The closest I got to showing him the world was this...whoopdefreakingdo!
Anyway, Chelsea's heart is living out what I wished I could have done with Noah.
Am I living vicariously through them? Only the freedom part...I lived all the rest already.
Either way, my heart is crying out for them to RUN, PLAY, LAUGH, CRY, REST, STARE, LISTEN, SING, NUGGLE, SMOOCH, HOLD ON and LET GO all at once.
I pray for God's love to fill every corner of their lives with such fullness that this time in their lives will ever be etched in their hearts.
I hate what they are going through but if I had it to do over, which I don't wish for, but if I could go back, I'd run like hell out of that hospital and live whatever amount of time I had with my boy, free from the beeps and meds and tubes and tests and pokes and drugs and smells and unknowns.
I'd run.
I don't despise what we went through, I do have to say, because 5 years later, I'm grateful to at least have the perspective that life is short. It's time to live, today, right now, to the fullest. Time and the people in our lives are literally gifts from God for our joy.
It's time you, or someone you know, stop holding back.
Hug tighter.
Kiss longer.
Stare at your children.
Laugh your ass off.
Play on the floor with your kids.
Tell your husband you love him.
Tell him you are sorry.
Hold hands.
Turn off your freaking television. Hell, throw the damn thing away.
Forgive.
Stop caring what others think of you.
Trust God sees the bigger picture. Relinquish the control you think you need to have.
Smile.
Listen.
Play.
Dream.
Live in wonder.
Baby Trek Atlas may not physically touch the soil of many countries in his short life time, but the way he's living with his big brothers and mommy and daddy who adore him...well, he's experiencing more love than many do in a lifetime. And, if you spend some time reading his mama's blog, I would venture to guess he'll have you looking around, wondering what matters, and making a few changes and tweaks to what is important.
That's Trek, a 9.5 month old, teaching us a thing or two. That's him stepping on the soil of many countries...
Life is short. How will you spend it?
Monday, January 09, 2012
Tebowing
So, unless you are a mole, living in a hole, you've heard of Tim Tebow by now. Even if you aren't a fan of the Broncos, don't care for football, and really only watch the Superbowl for either the half-time show or commercials or attend the parties just for the food, I would guess if you live in America, at the least, you've heard of the fall season game centered around a pig-skin where a bunch of guys crunch into one another and even more people, called fans, paint themselves and go berserk every weekend and Monday night as onlookers.
If you still don't know what I'm talking about, forget about it.
For those of you still reading, I think this is pretty cool.
So, in November I met a family, friends of friends, who was spending time at Craig Hospital, a top facility here in Denver specializing in spinal cord and brain injury and rehabilitation. Their 17 year old son was here learning a whole new way of living after an accident.
Before I called or met the family face to face, I really felt strongly that our family was to reach out to them. I've had a bit of history with hospital living, you might say, so wanted to encourage them in any way they needed.
I gave the mom a call and we talked a bit. She was so sweet and kind, saying they didn't need anything at all, but after a bit more time, she was open to us coming by with dinner. I asked her how long they thought they'd be here in Denver.
She said until January 12th.
I got a little choked up because in my heart I knew it was God's way of saying, "I told you I wanted you to reach out to them...if that date's not a sign, then you are slower than I thought..." Or something like that ;)
Anyway, over the last month and a half as we've gotten to know them a little, I also learned another common date we share: Yesterday...that is, besides it having been Elvis' birthday, it was my 40th and their son's 18th. Before Christmas his mom had told me that he hoped to be home in time for his birthday.
When we got back from Mexico (we went for 8 days over Christmas and enjoyed the sun and quiet non-commercialism...more about that in another post) I called to see how they were all doing and his mom said they had flights home for the 6th. Such great news since that was 6 days early and he'd be home with other family and friends in time to celebrate his 18th Birthday! What a milestone!
Ryan and I headed up last week to catch one more lunch with them before they flew home.
As we ate I asked him how it felt to turn down the most famous man in the NFL.
He humbly and quietly smiled, saying, "I just really want to go home."
You see, Tebow (well, his people) had given this guy a pass to yesterday's play-off game and the opportunity to meet Tim face to face...and as cool as that would have been for an 18th birthday gift (heck, my 9 year old daughter who didn't really like football until the last few games thought it was even cool...), it would have extended his already long stay here in Denver by a couple more days.
It's a generous gesture, but what I've gathered from Tebow's heart over the last several months and all the media reports, I'm guessing and would even bank on it, that Tim Tebow would have cheered this guy on, saying, "Go home, man! I'll be praying for you!"
Wednesday, August 16, 2006
Nurse are Amazing
Noah is crushing on his nurses! He's become quite the heart melter in the PICU. He's got nurses lining up left and right to be on his primary list. He is one blessed little guy with all these wonderful nurses who care for him around the clock. They are the best! Say lots of prayers for them because they work really hard!
Our Son the Rabbi
Our son, the Rabbi... Noah's cotton balls that protect his ears from his hat straps unraveled from squirming around so much. We think he looks like a Hasidic Jewish Rabbi. We are very proud of him:)
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| This little ensemble makes Noah look like a Hasidic Jewish Rabbi. |
The PICU TickleMonster
We have a favorite book which we found in England last year. Em, Nana, and I tagged along while Daddy worked and one day we discovered this book. Even though we are stuck in the hospital and Noah is a very sick boy, his big sis still needs tickles and snuggles and love.
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| The Tickle Monster even lives at the PICU in Denver. Emily cannot seem to escape him, poor thing! |
Two Weeks
Well, we have been at TCH for two weeks now. Noah is in serious but stable condition. We continue to wait and wait and wait for test results. Thanks for your patience as we wait patiently here. We'll keep you posted as we know anything. They have been on the phones checking on the status of the tests, which is a good thing. Due to the extent of testing, some are being sent to the Mayo, Johns Hopkins, Atlanta, etc.
Tomorrow we'll be having a big meeting at 3pm CMT with all the doctors and a social worker. Since many of the doctors are in different camps, they haven't been communicating, so it will be a good time for everyone to get on the same page and to hear Jason's and my heart about our son.
Two years ago I did a study on Proverbs. It's all about raising a son, so, since I have a little bit of time, I'm jumping back into it. I'll share deep thoughts as they come to me, whether you want to read them or not, ahem.
I am also doing my own research on the side and stirring the waters for the doctors. I am making them think outside the traditional box. The problem is, all the routine tests keep coming back "normal." Without a diagnosis, they won't treat Noah, so we are just maintaining, but not being very proactive.
Noah's pediatricians are putting together a homeopathic remedy that is an overall support tincture for his little body. I've made the docs aware that we'd be pulling in the natural side of medicine. Also, I've challenged the attending physician to find a D.O. that hasn't totally crossed over to the allopathic side of medicine and have him come take a look at Noah. I've also been given the name of a specialist in L.A. that is a mold toxicologist. We've emailed him and hope to hear from him soon, as mold toxicity is one of the avenues I am on right now. Please pray that if it is down this road, God will reveal it and have a cure for our son.
Ade xoxox
Monday, August 14, 2006
The Loaves and Fishes
I just wanted to encourage you all with the fact that the meals that are coming our way by all of you generous friends and family are not only delicious, but they are nourishing more than just the Graves crew.
There is a young couple here from Pueblo that have a 4 month old in CICU recovering from heart surgery. They were sleeping in the lounge and ordering take out which was outrageously expensive. We were able to share a meal with them and encourage their hearts. They just got into the Ronald McDonald house, so this is great, and will be staying there for probably a month or so. It's neat to meet the other families and be able to focus outward on them instead of on ourselves.
August 14th
What a morning! So, the new nurse today got tangled in Noah's feeding tube and almost pulled it out! We had an x-ray to make sure it was still leading into his small intestine and it was, thankfully. Noah and I slept great last night. We both slept pretty soundly for two 3-4 hour increments. He's taking a great nap right now. I called his pediatricians this a.m. They practice integrative medicine so I told the docs here that they'd be consulting with them, as well, as far as homeopathic medicine and support.
Jason and I want to say how thankful we are to all of you for your continued prayers and support! You are all amazing! We are truly humbled by the love and encouragement we are receiving. THANK YOU! It's been great reading your emails and blog responses. It's so cool to know, too, that you are all spreading the word about our handsome guy.
Yesterday at Red Rocks Church, our friends stood in our place as the whole church prayed for Noah! Shawn and Jill Johnson, the pastors, told us this and it was such a cool thing because it was already something God showed me in my heart last week.
The nurse today, of course forgiven for the feeding tube incident, asked me if we were believers. I said yes and she said she could totally tell because of the sense of peace in Noah's room. God's watching over our little man, we are full aware.
Jason and I want to say how thankful we are to all of you for your continued prayers and support! You are all amazing! We are truly humbled by the love and encouragement we are receiving. THANK YOU! It's been great reading your emails and blog responses. It's so cool to know, too, that you are all spreading the word about our handsome guy.
Yesterday at Red Rocks Church, our friends stood in our place as the whole church prayed for Noah! Shawn and Jill Johnson, the pastors, told us this and it was such a cool thing because it was already something God showed me in my heart last week.
The nurse today, of course forgiven for the feeding tube incident, asked me if we were believers. I said yes and she said she could totally tell because of the sense of peace in Noah's room. God's watching over our little man, we are full aware.
Sunday, August 13, 2006
Parenting from the Hospital
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| July 11th, Em's first gum chewing extravaganza... |
So, I don't know how to do an entry w/o a picture, so will have to ask Jason that question in the a.m., but chose this one so you could all see how Big Sis is doing...So, I made up a rule two years ago that our kids couldn't chew gum until their 4th birthday. Em totally bought it, except when her younger friends would chew it in front of her. Anyway, for her 4th birthday party, it was a gum extravaganza! This is a pic of her chewing before breakfast. We figured the faster she goes through it, the sooner it will be gone! She's very responsible with her gum, you should know...she saves her wrapper and throws it away in the trash can when it gets old. Also, she knows if she plays with it, it goes in the trash. For those of you with little ones, you are more than welcome to adopt our 4th birthday rule (or 5th or 6th, haha).
Anyway, tonight is my first night alone at the hospital since the 2nd when Noah was admitted. I have peace. My dear friend who was an ICU nurse before she had two girls was here with me for a while tonight and talked me through the monitors a little more thoroughly, which was helpful. She also formed a great connection with Noah's nurse, and asked her to watch out for me, too.
Yesterday and last night were my hardest so far...not for any particular reason. I was really stressed out about my milk production because I've been consistently behind Noah's demand so they are supplementing a special formula. It occurred to me today, though, that he only gains weight when he's on formula, so I talked to the nurse and we'll add a little of my milk to his formula, kind of like my milk is his vitamin for antibodies and the formula is the food. My stress levels dropped big time just making this decision, and regardless of everyone's opinions and 2 cents, he is gaining and maintaining on it, so we'll stick with this for a while.
Today it also helped that I got off "campus" (lingo from my old job). I took Emily to a birthday party for her little friend around the block. She had a blast making crafts, but especially because it was a princess party and she got to wear her Cinderella dress and shoes. Then she and I went home by ourselves to read books and take a nap. It was good to be together without any distractions or the worry of hospital life.
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| Princess Emily, Birthday Princess Annie, and Big Sister Princess Kate (They sound like a batch of British ladies!) |
Well, I'm going to bed now. Noah is sleeping soundly. I asked my friend, Becky, the former ICU nurse to please tell me what verbige she would use to describe Noah's condition so you could all have a clear picture and she said he is in critical but stable condition, meaning, he is doing well, but definitely needs to be in the ICU for breathing purposes.
In the meantime, we are still just waiting and waiting and waiting for test results.
Thanks for all of your prayers and encouragement. God is the One supplying rest and sweet comfort.
Saturday, August 12, 2006
PICU, ROOM 8
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| PICU, ROOM 8 |
We've moved in. Since Jason works from home, he is able to do some Internet work while hanging out with Noah. We are grateful God opened the door for him to work for a great company in England, working from home. We have the smallest patient but the biggest room in the PICU. It even has a full bathroom, though we haven't bathed in days...cleanliness is overrated.
(*We found out after we moved out of the PICU that Room 8 was usually reserved for fatal patients. I think it was a good thing they didn't spring the "fatal" part on us right off the bat!)
Noah and Auntie Danar
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| My younger sister, Dana, holding Noah in TCH Denver PICU |
Last fall Dana made a CD for our women's retreat with songs that she chose for various reasons, all of which are awesome praise and worship songs. At Noah's birth, we played the CD continuously and it has been playing continuosly since we moved to the PICU. When Danar came to hang with him the other night, she sang the songs to him for about two hours. He loved it!
Emily Holds Noah, Picture
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| Emily holding Noah in TCH Denver, PICU, with C-Pap |
Please pray for her during this tough time. She's holding up pretty well but is well aware of what is going on. She misses her brother and mom and dad a lot!
Friday, August 11, 2006
Update from Jason
Contacting Us:
Please feel free to call and visit - if you know us, you know we like people around. My dad taught me a very important lesson in life - relationships are all that you have and all that will last when you are gone.
The best thing to do is call us at the hospital (Children's Hospital of Denver) and they will transfer your call to our room. Feel free to call our cell phones, but we aren't allowed to have them on in the ICU, so it maybe difficult to get a hold of us - so feel free to leave voice mails.
Thanks, everyone!
Jason
Please feel free to call and visit - if you know us, you know we like people around. My dad taught me a very important lesson in life - relationships are all that you have and all that will last when you are gone.
The best thing to do is call us at the hospital (Children's Hospital of Denver) and they will transfer your call to our room. Feel free to call our cell phones, but we aren't allowed to have them on in the ICU, so it maybe difficult to get a hold of us - so feel free to leave voice mails.
Thanks, everyone!
Jason
PICU Update from Rachel
Friday 8/11/06. Noah is still in the Pediatric Intensive Care Unit at Children's Hospital this evening. He returned good oxygenation levels after they tried a different breathing apparatus to assist his breathing, a C-pap and a non-rebreather combination. Please pray his lungs will continue to grow stronger and expel the CO2 . They also have placed a central line which will allow for easy access blood draws and tests, as well as necessary medications.
We are thankful the little guy won' t have to be poked for every test now. Please pray against infection. There are a lot of germs in hospitals, as you might imagine. Noah's feedings are going well via the feeding tube although he misses mommy time, so Adrienne is talking, soothing, touching and cuddling him constantly. Please pray Noah will begin to gain weight. They are on contact isolation precautions in his ICU room, which means masks and gowns are worn in and out of the room to protect Noah's immune system against infection. Pray for continued sleep for Noah so he can grow stronger.
Adrienne's parents arrive tonight and so we can pray for God's healing sleep for everyone in the family!
Thank you so much for your precious prayers. We thank God for his blessing and presence in our lives.
Yours, Ade's friend Rachel
We are thankful the little guy won' t have to be poked for every test now. Please pray against infection. There are a lot of germs in hospitals, as you might imagine. Noah's feedings are going well via the feeding tube although he misses mommy time, so Adrienne is talking, soothing, touching and cuddling him constantly. Please pray Noah will begin to gain weight. They are on contact isolation precautions in his ICU room, which means masks and gowns are worn in and out of the room to protect Noah's immune system against infection. Pray for continued sleep for Noah so he can grow stronger.
Adrienne's parents arrive tonight and so we can pray for God's healing sleep for everyone in the family!
Thank you so much for your precious prayers. We thank God for his blessing and presence in our lives.
Yours, Ade's friend Rachel
Update from Rachel
It is Friday, 9:30am, 8/11/06. I just talked with Adrienne and she is off to do some research on the natural side of things as far as what it could be that Noah isn't taking well. Up to arriving at the hospital a little over a week ago, all Noah had ever had was her breast milk and unlike with Emily, she didn't feel like Noah and she were compatible.
Ade's sister Dana is at the hospital with Noah, and Jason is getting some work done at home. Noah's present condition is he has stabilized in the PICU at Denver Children's Hospital. His vitals continue to be good. The attending physician has asked for phone calls to follow up on the tests sent out to see if any results are back. They are looking for both genetic metabolic disorders and leukodystrophies, conditions pertaining to the white matter of the brain.
Please pray today that Noah would not have any of the leukodystrophies at all! Please pray he would be able to sleep well, is comfortable and for continued strength for both him, the family and all those helping at this time. Thank you for your concern!
Adrienne's friend, Rachel
Ade's sister Dana is at the hospital with Noah, and Jason is getting some work done at home. Noah's present condition is he has stabilized in the PICU at Denver Children's Hospital. His vitals continue to be good. The attending physician has asked for phone calls to follow up on the tests sent out to see if any results are back. They are looking for both genetic metabolic disorders and leukodystrophies, conditions pertaining to the white matter of the brain.
Please pray today that Noah would not have any of the leukodystrophies at all! Please pray he would be able to sleep well, is comfortable and for continued strength for both him, the family and all those helping at this time. Thank you for your concern!
Adrienne's friend, Rachel
Thursday, August 10, 2006
PICU Birdie Bath Picture
This is when he got a birdie bath and had all his head gear off so I stole a picture! It was great to see his face. Man, he's totally handsome!
Big Sis and Brudder, Before O2
This picture is before we moved to the PICU. Big Sis wanted to hold her "brudder", his nickname while in utero. Now in the PICU we can't see his gorgeous face very well. The next pic, though, is one when the PICU nurse was giving him a birdie bath and had his mask off. I had to capture the moment.
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