Noah is continuing to do some really neat things. He's now learned to pull himself up from his highchair when he leans over to the sides. We tell him to pull himself up and he does it each and every time. He still lacks the balance to sit without going to either side, but the fact that he is learning leads me to believe he will one day sit independently even if it takes many more months.
Noah has been a bit unhappy the last few days. He's having a teeth explosion. Somehow I thought his teeth would sprout in a specific order, but they are just coming up all over the place. For the most part I think he's doing well with it. I can tell he's sometimes a bit more fussy than other days, but he's always so cute even in his fussy moments.
Noah also got a very special present yesterday. A tumble mat from his friends at KOKO. We could never thank them enough for helping Noah. He loves it! It will be so nice to put him on a nice soft surface so he doesn't get rug burn on his race from rolling. Although he is doing quite a good job of lifting that head up while on his tummy these days.
All the strollers I have for Noah continue to be a battle. He still doesn't want to be in them. And of course I had to ask for help at Safeway when we went together the other day. Thank goodness my friend's mom, Dorothy was there to save the day. She always is there when I need her. She helped me load groceries, and even helped me push the stroller because I needed more hands. Sometimes I wonder if going it alone sometimes during the day is a good idea because often times I do wind up needing some kind of help, but I enjoy getting out with Noah and sometimes I have that voice in my head that says "you can do this!" And off I go to conquer a task. I see that same determination in Noah. Although I really don't think I can take credit for that. I think he was gifted at birth with this need to persevere.
In the last week I've seen so many unkind things done to others. It truly saddens me that Noah is a part of a world that can be so cruel to others. People will say or do just about anything with total disregard for another. You wonder why weren't they taught kindness? Who forgot to teach them? And sadly you know they will most likely not teach their children either. Noah will have to be exceptionally strong, as I know if people will go after able bodied people with ill intentions, they'll go after him too for all that people think he "isn't." I never want him to ache over the fact that he faces challenges that others don't have, never wanting him to cry over an unkind glance or wicked words. I don't believe that surviving meanness creates character. It breaks spirits, crushes smiles, and damages the heart. Go out of your way to be kind. Randomly tell a stranger they are beautiful, ask to help an elderly woman with her grocery bags, give someone a smile even though they snickered at you. Kindness will find kindness and I'd like to believe that kindness is as contagious as hope is.
This reminds me of a good old song by Joe South called "Walk a Mile in My Shoes" with a link to listen and lyrics to read:
http://www.youtube.com/watch?v=OoznjbKVnmw
If I could be you and you could be me for just one hour
If we could find a way to get inside each other's mind
If you could see you through my eyes instead of your ego
I believe you'd be surprised to see that you'd been blind
Walk a mile in my shoes, walk a mile in my shoes
Yeah, before you abuse, criticize and accuse
Walk a mile in my shoes
Well, your whole world you see around you is just a reflection
And the law of common says you're gonna reap just what you sow
So unless you've lived a life of total perfection
Mm-mm, you'd better be careful of every stone that you should throw
Yet we spend the day throwin' stones
at one another'cause I don't think or wear my hair same way you do
Well, I may be common people but I'm your brother
And when you strike out and try to hurt me it's a 'hurtin you,
Walk a mile in my shoes, walk a mile in my shoes
Yeah, before you abuse, criticize and accuse
Walk a mile in my shoes
There are people on reservations and out in the ghettos
And brother, there, but for the grace of God, go you and I
If I only had the wings of little angels don'tcha you know I'd flyTo the top of the mountain and then I'd cry?Walk a mile in my shoes, walk a mile in my shoes
Hey, before you abuse, criticize and accuse
Better walk a mile in my shoesWalk a mile in my shoes, walk a mile in my shoes
Oh, before you abuse, criticize and accuse
Walk a mile in my shoes,Walk a mile in my shoes, walk a mile in my shoes
Hey, before you abuse, criticize and accuse
Walk a mile in my shoes
Love,
Stacy, Chris & Noah
Thursday, April 29, 2010
Monday, April 26, 2010
Sweet Noah
Noah had a good weekend. I had wanted to take him to a funeral Saturday but it fell at his nap hour so I went alone, leaving him home with daddy. Although I'm sure he would have loved to be in the house of God. Funerals are never an easy thing, but there are lessons both in life and in death. This was the first funeral that I've attended since Noah's birth. I wondered if I would look at death differently, the process of grieving differently. But I don't. It's the same. It's the same pain and sense of loss no matter what life experiences you go through. And it's the living that continue to ache for that one person that was loved so dearly.
At the luncheon after services I had the pleasure of meeting a nice lady by the name of Carla, who does nursery school at the church. She made a kind invitation for Noah to attend. I of course would be with him the entire time, but Chris and I agreed that it would be nice to take Noah so he could share in another new experience.
Yesterday we had family portraits done provided by Foothills Church. The shoot was outdoors and it was a bit windy, and Noah isn't a fan of the wind, so I'm not sure if the photographer had any luck in taking great pictures as Noah was pouting and squinting. The only thing that seemed to distract him from the wind was seeing a bird or an airplane. But the photographer was very nice. We have truly been so blessed with meeting the most kind and loving people. Each one is placed purposefully in our lives to help us along our journey in someway. One might have a special message I need, one may offer a hug, one may offer an idea, while another may offer simple comfort.
Last night was the first time in my life I think I ever wanted to be a celebrity. I was watching Celebrity Apprentice, not quality television programming, but nonetheless something to occupy my time while Noah finished his evening bottle before bed. It is truly amazing to me that there are people in this world that have the ability to donate $50,000 or more to fundraisers - like it's pocket change to them. But it's not about what you know, it's about who you know. These celebrities have so much disposable income it's no big deal. In my world $50,000 would take Noah a hundred thousand miles in therapy costs and equipment. And in the special needs world you'll either find those willing to share ideas on where to find help and fundraising, or those that keep the knowledge locked up like a tightly guarded secret. I think some families don't really want to advertise where they find help for fear that their own help will run dry. I can understand their fears to a point, it is hard to find help and when you do you want to hold on tight, yet I think regardless it's still important to share experiences because there will be another mom right behind me that is starting her journey as I write this. Her child is being born right now with challenges and she might find me and need help. Granted I'm by no means even close to being an expert, but I'm sure trying to do my homework to find avenues to pursue to help Noah. And if I can point another family in the right direction then I'm happy to do so.
Noah's Littlest Heroes Photographer, Tonee Lawrence, has posted a beautiful video to accompany a blog that I wrote on her photography site. It makes me cry such tears of joy every time I watch it. We've come so far. We have so far to go, but he's just the most magical little person, he lights up every part of my life. And I am so thankful and blessed to be his mom. There are not enough words to tell you Noah how much I love you. This is the website to watch his photo video:
http://www.toneelawrence.com/blog/
Love,
Stacy, Chris & Noah
At the luncheon after services I had the pleasure of meeting a nice lady by the name of Carla, who does nursery school at the church. She made a kind invitation for Noah to attend. I of course would be with him the entire time, but Chris and I agreed that it would be nice to take Noah so he could share in another new experience.
Yesterday we had family portraits done provided by Foothills Church. The shoot was outdoors and it was a bit windy, and Noah isn't a fan of the wind, so I'm not sure if the photographer had any luck in taking great pictures as Noah was pouting and squinting. The only thing that seemed to distract him from the wind was seeing a bird or an airplane. But the photographer was very nice. We have truly been so blessed with meeting the most kind and loving people. Each one is placed purposefully in our lives to help us along our journey in someway. One might have a special message I need, one may offer a hug, one may offer an idea, while another may offer simple comfort.
Last night was the first time in my life I think I ever wanted to be a celebrity. I was watching Celebrity Apprentice, not quality television programming, but nonetheless something to occupy my time while Noah finished his evening bottle before bed. It is truly amazing to me that there are people in this world that have the ability to donate $50,000 or more to fundraisers - like it's pocket change to them. But it's not about what you know, it's about who you know. These celebrities have so much disposable income it's no big deal. In my world $50,000 would take Noah a hundred thousand miles in therapy costs and equipment. And in the special needs world you'll either find those willing to share ideas on where to find help and fundraising, or those that keep the knowledge locked up like a tightly guarded secret. I think some families don't really want to advertise where they find help for fear that their own help will run dry. I can understand their fears to a point, it is hard to find help and when you do you want to hold on tight, yet I think regardless it's still important to share experiences because there will be another mom right behind me that is starting her journey as I write this. Her child is being born right now with challenges and she might find me and need help. Granted I'm by no means even close to being an expert, but I'm sure trying to do my homework to find avenues to pursue to help Noah. And if I can point another family in the right direction then I'm happy to do so.
Noah's Littlest Heroes Photographer, Tonee Lawrence, has posted a beautiful video to accompany a blog that I wrote on her photography site. It makes me cry such tears of joy every time I watch it. We've come so far. We have so far to go, but he's just the most magical little person, he lights up every part of my life. And I am so thankful and blessed to be his mom. There are not enough words to tell you Noah how much I love you. This is the website to watch his photo video:
http://www.toneelawrence.com/blog/
Love,
Stacy, Chris & Noah
Saturday, April 24, 2010
Remembering to Help
As much as Chris and I attempt to plan out our evenings whether that be playing with Noah in the yard, or making a mad dash to get milk, there is always something that comes up that changes any attempts of a plan. Last night our, littlest dog, Brystal, had her ear fill up with fluid to the point where it could no longer stand up. So off to the emergency vet we went, and a over a couple hundred dollars later we were home. Brystal is our non-complainer we would have never known anything was wrong had that ear not started to droop. Chris and I continue to learn there is no such thing as really planning anything. Life can just be a constant curve ball and you've got to do the best job possible to catch that ball.
While we were there I seen fliers of charities I used to volunteer for. Counselors for Critters, Max fund, and Every Creature Counts. The days when I was trying to rescue every furry creature I could and calling my mom to help me up big trees to rescue stranded kittens. My heart is still there, but my time and energy has been diverted to other causes now. Now my days are filled with therapies, caring for Noah, researching foundations and charities, and trying to do my small part in helping other children like Noah.
My close friend Heather, asked me to write a piece on Noah and The Children's Miracle Network for Costco's Children Miracle Network donations for the month of May. It does my heart good to try to help someone else in anyway that I can, no matter how small that may be. You might just get to see Noah's picture at our local Costco here soon to encourage donations to help other children have the same opportunity to find their miracle though generous donations from people just like you. Please remember to give if you are able to. This is the piece that I wrote for Costco:
Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children's Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah's brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devastating news. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. However little Noah has beaten the odds and although he faces some physical challenges he is a living miracle. Noah's miracle has brought our story to all of you.
Children's Miracle Network is helping save the lives of children like Noah, by raising funds and awareness for children's hospitals and foundations throughout the world. Donations help create miracles by funding medical care, research and education that saves and improves the lives of 17 million children each year. Every child deserves the chance at hope and healing. Please consider making a donation today, to help thousands of children have the chance to live, to thrive and to recover. With the help of a Children’s Miracle Network children of all ages and backgrounds can receive treatment for every imaginable disease and injury—from asthma and broken bones to cancer, chromosome disorders and even brain cooling like Noah underwent. Children’s hospitals are also on the frontlines of research, education and outreach programs that keep millions of kids out of the hospital each year.
Please donate today. Help another child just like Noah find their miracle. Thank you.
"Tell everyone what you want to do and someone will want to help you do it."
W. Clement Stone
Love,
Stacy, Chris & Noah
While we were there I seen fliers of charities I used to volunteer for. Counselors for Critters, Max fund, and Every Creature Counts. The days when I was trying to rescue every furry creature I could and calling my mom to help me up big trees to rescue stranded kittens. My heart is still there, but my time and energy has been diverted to other causes now. Now my days are filled with therapies, caring for Noah, researching foundations and charities, and trying to do my small part in helping other children like Noah.
My close friend Heather, asked me to write a piece on Noah and The Children's Miracle Network for Costco's Children Miracle Network donations for the month of May. It does my heart good to try to help someone else in anyway that I can, no matter how small that may be. You might just get to see Noah's picture at our local Costco here soon to encourage donations to help other children have the same opportunity to find their miracle though generous donations from people just like you. Please remember to give if you are able to. This is the piece that I wrote for Costco:
Noah Mitchell Warden was born December 23, 2008, weighing 9lbs and 1oz by emergency c-section. Noah did not breathe or have a heartbeat for the first 13 minutes of his life. He was taken to Children's Hospital in order to have a procedure done known as brain cooling in attempts to minimize damage caused by perinatal asphyxia. Noah's brain cooled for 72 hours after which time the hospital ran an MRI and an EEG to determine the extent of the damage. Unfortunately, the results came back with devastating news. Noah had suffered "global damage" to his brain. As a result the prognosis was grim. They said Noah would mostly likely never walk, talk, eat or even breathe on his own. However little Noah has beaten the odds and although he faces some physical challenges he is a living miracle. Noah's miracle has brought our story to all of you.
Children's Miracle Network is helping save the lives of children like Noah, by raising funds and awareness for children's hospitals and foundations throughout the world. Donations help create miracles by funding medical care, research and education that saves and improves the lives of 17 million children each year. Every child deserves the chance at hope and healing. Please consider making a donation today, to help thousands of children have the chance to live, to thrive and to recover. With the help of a Children’s Miracle Network children of all ages and backgrounds can receive treatment for every imaginable disease and injury—from asthma and broken bones to cancer, chromosome disorders and even brain cooling like Noah underwent. Children’s hospitals are also on the frontlines of research, education and outreach programs that keep millions of kids out of the hospital each year.
Please donate today. Help another child just like Noah find their miracle. Thank you.
"Tell everyone what you want to do and someone will want to help you do it."
W. Clement Stone
Love,
Stacy, Chris & Noah
Tuesday, April 20, 2010
Bathe in Laughter
Daddy and his little cart 
Strolling through Wal-mart
Wondering why mom needs lettuce
The New Carts at Wal-martNoah had a great weekend. We got out to try some new shopping carts at Wal-mart. I love how some of these shopping centers are moving in the right direction with five-point-harness sitting options for older children. Target also has a version of this. I wish that all grocery stores would implement them. Granted Noah still has balance issues so on slick surfaces he wants to slide - even in a five point harness, but if I have his head rest behind him I can give him a sense of balance. I probably need to make something to sit inside the five-point harness seats that would be soft fabric with foam to help him not slide to the left or the right. But we are super close with these types of shopping carts since I can't just put him in any cart and go like other mommies can.
I also had a chance to go to Whole Foods this weekend, which is a bit of a drive for me since our local Whole Foods is so miniature it carries hardly anything I ever need. I was on a quest to pick up some of the meltables on Noah's OT eating list. I got him Pirate's Veggie Booty and these bite size vanilla wafer cookies called Loacker Quadratini. Those little cookies are so good I could eat the whole bag, but I keep telling myself they are Noah's. I of course can't stick the whole thing in his mouth. He naws at little corners of them and he does bite off baby pieces with his front teeth - sometimes pieces a bit bigger that I'd like to see him go at, but he's doing amazing with it. He's got good jaw action and manipulates those meltables quite good. We're still not even close to the next step in food. This is going to be a very long and slow process. I suspect that having a feeding tube down his throat for fifteen days and being gagged intentionally multiple times a day to determine of course that he'd never be able to gag ever in his life has also contributed to our eating problems, advancements and oral hypersensitivity. You always hope that everything they did to your child was necessary for survival, but I'll never know a lot of what was done to either of us starting with his birth.
Noah's also been starting this new squeal with excitement - it's a familiar sound that I've heard many babies make. I think it's the cutest little sound, and each day I see him getting a bit closer to new developments whether it be vocal or physical.
Sadly I've tried for a few days to take Noah on walks unsuccessfully. He starts crying as soon as I start to buckle him and by the time we get to the end of the driveway it's a full scream with tears and snot. He used to love stroller rides. I could walk miles with him last summer without a peep. Now I can't even walk five steps. I remember having this problem last spring too, but Noah quickly got over it all on his own. I'm hoping eventually with more practice he'll like taking long walks with me again.
Noah's always has had a tendency for seeing things that I can't see. He'll even almost carry on a babble conversation with things I can't see. Usually it never really bothered me that much until today and I got an uneasy feeling as I watched his eyes track something from one end of the room to the other. Thankfully whatever he was watching did make itself visible to me which happened to be a flying wasp in the kitchen. It's the sixth wasp in the house in less than three days and I cannot figure out how they are getting in. We of course have two different kinds of wasp traps outside with nothing being caught in them. I'm fine if Noah wants to call the birds and squirrels to the kitchen but I wish he'd not invite the wasps.
I've had an inspiring week of speaking with new people that have left me feeling empowered. Slowly I'm learning to become more assertive especially when it comes to grabbing onto opportunities that will help Noah. It's still finding that good balance though of being nice and friendly which is true to my nature, but firm and determined at the same time.
I stumbled on a neat site today called Innovative Piano. It's piano teachers that teach special needs children how to play. http://www.innovativepiano.com/index.html I've always been a believer in the power of music to heal.
I've had a week when I've learned of a lot of other families' losses or are even facing the death of their ailing child. Even though I have never met them personally, my heart aches for them none the less. Our daily challenges are nothing in comparison. Our blessings are many as we have been gifted to still have Noah in our lives. And I love him every second of every day. It makes his physical challenges pale in comparison to the thought of ever losing him. We really have been blessed with such a miracle. And I give my thanks to God every day that he made that rainbow promise with our Noah that December morning of his birth.
I've attached some pictures of Noah's shopping cart adventures, and a picture of his daddy and a little cart. Chris and I are always laughing and I think it is so very important to keep our sense of humor about everything. "Mirth is God's medicine. Everybody ought to bathe in it. " ~Henry Ward Beecher
Love,
Stacy, Chris & Noah
Friday, April 16, 2010
Got Hope?
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Got Hope? I seen this bumper sticker on a car that I was following on the way to Noah's monthly PT and OT check-in that said Got Hope? I do, I have lots of hope. I have so much hope that it pours from my soul. I see many improvements in Noah although they are small they are still there. Sure I wish somedays that he could do one giant milestone - even if it's as simple as sitting. But Chris is always quick to remind me that rolling is a milestone - yet it's not one that is really celebrated as such. I'd love for Noah to be moving faster with movements. Although many of my friends have reminded me it's not a sprint it's a marathon. Noah will go at his own pace whatever he chooses that to be.
It was great to get some good advice from his PT and OT, on feeding and things that might benefit Noah in the future. I came home with some new ideas on things to try to introduce Noah to. Dried beans and rice to play in with his hands and feet to help sensory issues, and a print-outs of new meltable foods to try and foods that will eventually become the next step for him, although I'm not confident that Noah is close to that step yet. He does fantastic with purees but still seems to want to suck on meltable things rather than chew, and granted he really has no teeth yet to really chew with. But with everything else it will take lots of time.
I also introduced a sippee cup that still has a nipple, Noah is making good efforts to hold it, will not put it in his mouth himself, but is willing to hold it after I help it into his mouth. That in itself is fantastic.
It was great to get some good advice from his PT and OT, on feeding and things that might benefit Noah in the future. I came home with some new ideas on things to try to introduce Noah to. Dried beans and rice to play in with his hands and feet to help sensory issues, and a print-outs of new meltable foods to try and foods that will eventually become the next step for him, although I'm not confident that Noah is close to that step yet. He does fantastic with purees but still seems to want to suck on meltable things rather than chew, and granted he really has no teeth yet to really chew with. But with everything else it will take lots of time.
I also introduced a sippee cup that still has a nipple, Noah is making good efforts to hold it, will not put it in his mouth himself, but is willing to hold it after I help it into his mouth. That in itself is fantastic.
We have some added attractions around the house these days. A group of rather fat sparrows and our resident mamma squirrel that has decided to nest and have babies in our woodpile without asking, now come to the kitchen window when Noah is eating. They only come when he is in the kitchen, and leave when he does. I'm going to start calling Noah the new animal whisperer. The birds and the squirrel will all sit on the fence at the same time and stare into the window to watch him, he watches back and talks to them. It's a sweet thing to witness, even though I have no complete understanding of the phenomenon that is occurring. He welcomes them and they are happy to see him, and we all have breakfast, lunch and even dinners together.
As Noah gets older I see him battling sensory issues a bit more than before. I put his naked feet in the grass and touching the concrete yesterday in the backyard only to hear him scream. I kept working on it and by the end of the day he was able to let his feet at least be touched by the grass but it took a lot of work and me pulling out a lot of grass to sprinkle on him. I'm sure Chris isn't going to be amused at the bald spot I created in the yard all in the name of therapy. He also fears loud noises and also hates the bubble maker I found him at Target. I was hoping he'd find it entertaining but it terrifies him.
Noah also was featured in a spot in the Littlest Heroes Project: http://www.littlestheroesproject.org/meet-our-heroes/We remain so very proud of him. He will always be our little hero making it through all his daily challenges.
Around every corner I'm finding help in the most unexpected ways. Such kindness from Noah's therapists, non-profit organizations and foundations willing to guide and help us, love from strangers and friends offering us support, love and kindness. We never forget any of you that have helped our little Noah. God bless each and everyone of you always.
Periodically I'd like to give you all information on groups that have helped us or foundations that are making a difference in the lives of others, so in case you are able to donate to help another child like Noah that you can. There are thousands of us - children equally as precious as our little Noah that need help too. Together we all can make a difference in each other's lives.
Two Angels Foundation is a local foundation that provides trikes for kids like Noah so they have the opportunity to ride a bike and assist with other therapy needs. They are holding a 5K run/walk race in May http://twoangelsfoundation.org/id17.html you can help them raise funds to continue to help kids like Noah. If you are in the Colorado area, please consider participating.
Chris and I are planning to participate ourselves in this walk, to give back in any way that we can. I wish our means were greater, I'd move mountains to help all those that are struggling just like we are. If you would like to sponsor Chris and I with the proceeds going to Two Angels, or walk/run with us, please contact us for details by email at: goforette@msn.com
There is also another great organization doing great work to help others called Keep on Keeping On. http://keeponkeepingon.org/ Although this organization is not local they are doing great things to benefit the lives of others with disabilities. They also have an option to make a tax-deductable donation on their website.
Please remember that every little bit of kindness matters. It collects and makes a blanket to lift you up on some of the hardest days.
I've attached pictures of our mamma squirrel and one of the sparrows that come to watch Noah at meal times in the kitchen. They have no fear, nothing scares them away. They come for Noah.
Love,
Stacy, Chris & Noah
Chris and I are planning to participate ourselves in this walk, to give back in any way that we can. I wish our means were greater, I'd move mountains to help all those that are struggling just like we are. If you would like to sponsor Chris and I with the proceeds going to Two Angels, or walk/run with us, please contact us for details by email at: goforette@msn.com
There is also another great organization doing great work to help others called Keep on Keeping On. http://keeponkeepingon.org/ Although this organization is not local they are doing great things to benefit the lives of others with disabilities. They also have an option to make a tax-deductable donation on their website.
Please remember that every little bit of kindness matters. It collects and makes a blanket to lift you up on some of the hardest days.
I've attached pictures of our mamma squirrel and one of the sparrows that come to watch Noah at meal times in the kitchen. They have no fear, nothing scares them away. They come for Noah.
Love,
Stacy, Chris & Noah
Sunday, April 11, 2010
Being Friendly
Chris and I took Noah out for some afternoon shopping together. I put him in a different stroller and he seemed to enjoy it must better than our last difficult trip to the grocery store together. It's all about finding a comfort level for Noah. I have no doubts that he still battles sensory issues - I even suspect that clothing can often be difficult for him. He much prefers no socks on his feet, and silky types of materials to sleep in. But I hear of lots of children that have sensory issues - many that had normal births and are considered "normal developing children."
When we were out shopping I seen another mother with a child in a walker, I casually mentioned to her that he looked like he was doing great, and that my son was special needs too and that I hoped he'd be able to walk with help someday too. She wasn't at all friendly. One would think that if you had something this difficult in common that somehow you'd have this automatic bond. But that isn't the case. Some moms I run across have become so opinionated about treatments, doctors and therapies that they try to push all of their views constantly upon you and they leave little room for your ideas. Some parents I see not being able to recover from the traumatic event that caused their child to have special needs and they fall into this constant state of permanent depression. Granted I'm the first in line to say I have my bad and good days, but I'm always able to pull myself out of the bad days - I don't permanently stay there. Then you have the parents and families that follow your journals and blogs, not because they really care if your child is doing well or are rooting for them - or even genuinely care about your family, but because they need ideas to either take for their own blogs, or need to find a way to pick you apart in unsolicited email comments or are only reading about you so that they can compare children.
Saying that there is an automatic bond with special needs parents is like saying that families that have blond headed children will always gravitate towards each other and they'll be best friends for life. People are fickle regardless of what they may have in common. A lot of people have the "what's in it for me" attitude. Sure there is a level of understanding of what it takes to care for a special needs child, you know how it feels, the ups and the downs, the pain and the joy. But I think the bond stops there. It's certainly not a club, sisterhood, or special union.
Granted that's not to say that I haven't met and become friends with some very incredible families, but even if we didn't have special needs children they are the type of people I would have wanted in our life regardless. Having a special needs child doesn't make you an automatic "good apple." Nor does it give you an excuse to be a "bad" one either.
I want Noah's journey and the experiences that come along with being his parents to be a positive one. We have no sparkling glitter to make our family look "cool", we are simple parents trying to raise a sweet precious little boy that has a lot of physical challenges. I will always try to demonstrate love, compassion and hope for Noah, even if I find those along my way that refuse to be "friendly." I say give them a smile and a hello anyways, even if you know they will reject your kind ways. Don't become cold and hard because the rest of the world can be. Show them the warmth and the difference a smile can make. Even if the only thing you may ever have in common is a special child.
Here is a beautiful quote from my favorite childhood book:
"You have been my friend. That in itself is a tremendous thing. I wove my webs for you because I liked you. After all, what's a life, anyway? We're born, we live a little while, we die. A spider's life can't help being something of a mess, with all this trapping and eating flies. By helping you, perhaps I was trying to lift up my life a trifle. Heaven knows anyone's life can stand a little of that."
E.B. White - Charlotte, "Charlotte's Web
Love,
Stacy, Chris & Noah
When we were out shopping I seen another mother with a child in a walker, I casually mentioned to her that he looked like he was doing great, and that my son was special needs too and that I hoped he'd be able to walk with help someday too. She wasn't at all friendly. One would think that if you had something this difficult in common that somehow you'd have this automatic bond. But that isn't the case. Some moms I run across have become so opinionated about treatments, doctors and therapies that they try to push all of their views constantly upon you and they leave little room for your ideas. Some parents I see not being able to recover from the traumatic event that caused their child to have special needs and they fall into this constant state of permanent depression. Granted I'm the first in line to say I have my bad and good days, but I'm always able to pull myself out of the bad days - I don't permanently stay there. Then you have the parents and families that follow your journals and blogs, not because they really care if your child is doing well or are rooting for them - or even genuinely care about your family, but because they need ideas to either take for their own blogs, or need to find a way to pick you apart in unsolicited email comments or are only reading about you so that they can compare children.
Saying that there is an automatic bond with special needs parents is like saying that families that have blond headed children will always gravitate towards each other and they'll be best friends for life. People are fickle regardless of what they may have in common. A lot of people have the "what's in it for me" attitude. Sure there is a level of understanding of what it takes to care for a special needs child, you know how it feels, the ups and the downs, the pain and the joy. But I think the bond stops there. It's certainly not a club, sisterhood, or special union.
Granted that's not to say that I haven't met and become friends with some very incredible families, but even if we didn't have special needs children they are the type of people I would have wanted in our life regardless. Having a special needs child doesn't make you an automatic "good apple." Nor does it give you an excuse to be a "bad" one either.
I want Noah's journey and the experiences that come along with being his parents to be a positive one. We have no sparkling glitter to make our family look "cool", we are simple parents trying to raise a sweet precious little boy that has a lot of physical challenges. I will always try to demonstrate love, compassion and hope for Noah, even if I find those along my way that refuse to be "friendly." I say give them a smile and a hello anyways, even if you know they will reject your kind ways. Don't become cold and hard because the rest of the world can be. Show them the warmth and the difference a smile can make. Even if the only thing you may ever have in common is a special child.
Here is a beautiful quote from my favorite childhood book:
"You have been my friend. That in itself is a tremendous thing. I wove my webs for you because I liked you. After all, what's a life, anyway? We're born, we live a little while, we die. A spider's life can't help being something of a mess, with all this trapping and eating flies. By helping you, perhaps I was trying to lift up my life a trifle. Heaven knows anyone's life can stand a little of that."
E.B. White - Charlotte, "Charlotte's Web
Love,
Stacy, Chris & Noah
Saturday, April 10, 2010
Disability Beatitudes
Noah has officially learned the art of rolling over completely by himself - he has no problems rolling from back to tummy or from tummy to back - in fact he likes it so much that he'll roll over several times in a row - he has learned he is mobile - in some fashion. He finds it especially funny when he rolls and rolls into a toy and butts it with his head. Maybe soccer is in his future. Chris and I feel a bit over the moon about it. Sure it's not sitting, crawling, walking or talking - but it's amazing progress for him. We couldn't be more proud of our little peanut.
We are thrilled with his new skills and know that it's just a matter of time before he figures out the next big step in movement. Along with his new movements his voice tones are starting to change he's babbling more in his own way. Which we think is wonderful. He also has learned to communicate when he wants me to give him his highchair toys, he has his own sound for that. He's very smart, and I think with lots of love and care he'll go so far.
Thank you all so very much for continuing to pray so very hard for out little warrior. He's doing amazing things. God is listening - the angels we've called are listening. I stumbled on this poem and thought it was worth posting:
Disability Beatitudes".
Blessed are you who take time to listen to defective speech, or you help us to know that if we persevere, we can be understood.
Blessed are you who walk with us in public places and ignore the stares of strangers, for in your companionship we find havens of relaxation.
Blessed are you that never bids you "hurry up" and more bless are you that do not snatch our tasks from our hands to do them for us, for often we need time rather than help.
Blessed are you who stand beside us as we enter new ventures, for our failures will be outweighed by times we surprise ourselves and you.
Blessed are you who ask for our help, for our greatest need is to be needed.
Blessed are you when by all these things you assure us that the thing that makes us individuals is not our peculiar muscles, nor our wounded nervous system, but is the God-given self that no infirmity can confine..
Blessed are those who pick thing up without being asked.
Blessed are those who understand that sometimes I am weak and not just lazy.
Blessed are those who forget my disability of the body and see the shape of my soul.
Blessed are those who see me as a whole person, unique and complete, and not as a "half" and one of God's mistakes.
Blessed are those who love me just as I am without wondering what I might have been like.
Blessed are my friends on whom I depend, for they are the substance and joy of my life!!!
Author unknown
Thank you all so very much for continuing to pray so very hard for out little warrior. He's doing amazing things. God is listening - the angels we've called are listening. I stumbled on this poem and thought it was worth posting:
Disability Beatitudes".
Blessed are you who take time to listen to defective speech, or you help us to know that if we persevere, we can be understood.
Blessed are you who walk with us in public places and ignore the stares of strangers, for in your companionship we find havens of relaxation.
Blessed are you that never bids you "hurry up" and more bless are you that do not snatch our tasks from our hands to do them for us, for often we need time rather than help.
Blessed are you who stand beside us as we enter new ventures, for our failures will be outweighed by times we surprise ourselves and you.
Blessed are you who ask for our help, for our greatest need is to be needed.
Blessed are you when by all these things you assure us that the thing that makes us individuals is not our peculiar muscles, nor our wounded nervous system, but is the God-given self that no infirmity can confine..
Blessed are those who pick thing up without being asked.
Blessed are those who understand that sometimes I am weak and not just lazy.
Blessed are those who forget my disability of the body and see the shape of my soul.
Blessed are those who see me as a whole person, unique and complete, and not as a "half" and one of God's mistakes.
Blessed are those who love me just as I am without wondering what I might have been like.
Blessed are my friends on whom I depend, for they are the substance and joy of my life!!!
Author unknown
Love,
Stacy, Chris & Noah
Stacy, Chris & Noah
Thursday, April 8, 2010
Grocery Challenges
Noah's little red face from rolling Noah is continuing to roll on his tummy quite frequently. I can always tell when he's done it because his voice changes. I always give him a while on his tummy to see if he'll flip back over on his own before I rescue him. His face is quite raw these days from flipping over and having his face still planted on the ground. Even if I put him on the softest blanket I have it still rubs. I'd love to get him a big therapy soft mat to be on, but with anything they are expensive and it's not like insurance is going to do me any favors.
Noah and I ventured out to the store for a handful of on-sale groceries yesterday. It should have been a slightly easier trip than it actually turned out to be, but Noah refused his stroller - something he does occasionally when he simply wants me to hold him and tote him around. So my only alternative was to try to put him into a grocery cart - something that is still by no means easy - especially when I'm by myself with a little floppy body. I have to drive the cart with one hand, while the other holds his head and tries to balance. Sometimes I have to push the cart with my legs so I can both balance him and his head. Then pulling things off a shelf or picking things up to put into the cart is very tricky. It's quite a trick to do a simple task like put a lemon into a plastic grocery produce bag using only two fingers to both tear the bag from it's holder and place the lemon in it and bounce it into the cart. Although I should be quite amazed with my new talents I realize that to many people I look quite strange in the store. They can't figure out exactly what my problem is. And you hate to put a sign on your back advertising you have to have both hands on this little baby at all times.
Fortunately the staff at the store was incredible. I am always amazed how even in my most difficult challenging moments that God places all the right people I need to help me. A nice lady stocking yogurt helped me with my milk, as she gave me a good hope story about how she sees a few moms with babies like mine in the store and smiles and says that a balloon will be waiting for Noah when we check-out, or the nice-checker who loaded my entire basket onto the belt, because I had no hands to do so myself and kindly says my mom did foster care, I know what it is like to care for babies with challenges. Even another worker who said she used to be a pediatric nurse and cared for a 27 week old premature baby that was never supposed to live and she now hears from him as a sophomore in college and he's doing beautifully as she whispers to me "never say never." As she whispered those words a light breeze much like a gentle chill climbed up one arm as if someone was holding it. I remembered my great aunt at that moment saying to me "never say never" as I would always protest I was never going to get married or have kids because I had a plan for my life. I get gentle reminders all the time in all sorts of forms. I just have to listen to the messages that are being sent my way.
If you ever happen to see a mommy like me struggling in a store, never be afraid to ask if you can help, more than likely we'll appreciate it more than you'll ever know.
Love,
Stacy, Chris & Noah
If you ever happen to see a mommy like me struggling in a store, never be afraid to ask if you can help, more than likely we'll appreciate it more than you'll ever know.
Love,
Stacy, Chris & Noah
Monday, April 5, 2010
Noah's Second Easter
Noah is simply doing amazing things in the last few days. He has slept now three days in a row on his tummy on the floor, falling asleep by himself. Something I never thought he'd find comfort enough to do. He's now can roll like a little sausage on the floor - something that is truly amazing to watch. He's very slow at it and only has done it twice, but you can tell he's really trying to figure out what he is doing It's like this big light has gone off for him, and he is understanding. I ask him where the clock, light or his toys are and he'll look in each different direction when I ask him to find each object. We have come so far in such a short amount of time, that we look forward to what the future will hold for him. He's also playing with such intention. He pushes his cars with his fist or hand when we put them close to him, knocks over his stacked blocks while laughing and tries to string his baby guitar.
The days of holding onto all those thoughts of "can't, won't or never" that had been instilled in us are diminishing, we see only possibilities unfolding like beautifully wrapped little gifts. What a beautiful gift that Noah is able to roll on his sides and tummy this Easter weekend. We are overjoyed. Witnessing Noah blossom into a capable child, is the biggest gift of all, this is what Chris and I work for each day. The brain has the potential to learn amazing things, to teach itself new skills every second.
Noah had a wonderful Easter, he loved all of his Easter Baskets. His buddy Bill even stopped by with another little basket at the end of the day. He thought he was the most little special person and played with his third basket after he had an after dinner snack. Noah tried the inside of a deviled egg and either hated the taste or the texture I'm really not sure which. But seemed to love the candied yams and gold pineapple.
Thank you to everyone who sent wishes, prayers and kindness for Easter for Noah. We hold your love close to our hearts. I've posted a video of Noah's second Easter.
http://www.onetruemedia.com/shared?p=aaf8f932ac98d66eae9006&skin_id=701
Love,
Stacy, Chris & Noah
The days of holding onto all those thoughts of "can't, won't or never" that had been instilled in us are diminishing, we see only possibilities unfolding like beautifully wrapped little gifts. What a beautiful gift that Noah is able to roll on his sides and tummy this Easter weekend. We are overjoyed. Witnessing Noah blossom into a capable child, is the biggest gift of all, this is what Chris and I work for each day. The brain has the potential to learn amazing things, to teach itself new skills every second.
Noah had a wonderful Easter, he loved all of his Easter Baskets. His buddy Bill even stopped by with another little basket at the end of the day. He thought he was the most little special person and played with his third basket after he had an after dinner snack. Noah tried the inside of a deviled egg and either hated the taste or the texture I'm really not sure which. But seemed to love the candied yams and gold pineapple.
Thank you to everyone who sent wishes, prayers and kindness for Easter for Noah. We hold your love close to our hearts. I've posted a video of Noah's second Easter.
http://www.onetruemedia.com/shared?p=aaf8f932ac98d66eae9006&skin_id=701
Love,
Stacy, Chris & Noah
Saturday, April 3, 2010
Thursday, April 1, 2010
Dreaming of Hope with Open Eyes
Noah is doing wonderfully. He continues to give new movements everything he has. We're now trying to teach Noah the art of putting weight on his arms to accompany the fact that he is now able to get his head off the ground. He doesn't realize that his arms are very beneficial to the art of crawling just yet, but he'll get it down. He's a bit frustrated because he's been doing so many movements that are so new to him, but he squeals with frustration and determination at the same time.
A lot of new things have been introduced to Noah this week. From food to therapy movements. I'm having a blast liquefying anything I have in my pantry for him. He ate organic cheese ravioli for lunch and candied yams for dinner. I'm so very thrilled with our emulsifier. Noah always smiles big, and I know he's thanking his grandmother with every bite. Her heart continually is always filled with such love and joy for him.
Today was the first time Noah has ever put himself to sleep. He fell asleep during therapy on his tummy. Was a first, and a wonderful first. Slept for two hours that way on the floor. But with most things, I'm not sure if he'll repeat this or not. Some things he does he prefers it to be a one time only event. I of course took pictures to document the event. There is nothing more precious than to watch a peaceful sleeping baby.
I'm a strong believer in the therapy we are currently doing. The Feldenkrais/ABM Method, is working for Noah. I wish of course I could find a way to get insurance companies to recognize that it's not some made up therapy - some far out alternative method that doesn't produce results. It's not make believe like lets stack tupperware bowls all around Noah and see if it motivates him to walk. It is a real therapy with real results. But the battle to get insurance companies to pay for such things isn't going to happen in the time frame I need it to in order to help Noah. It's a battle that could take years upon years. I wish I could find Noah his own little scholarship. I know he'd make a sweet little applicant. I would even send in a picture and write his life biography for him to accompany such an application - if only it were that easy.
They say the sweetest rewards are those most hard earned. Noah is working so hard, Chris and I working so hard to get him the things we believe are helping him. Each day is hard. It's often bittersweet. Things are indescribably hard for us, but when you look at Noah's precious face it keeps our drive going. We're like the two energizer bunny parents. We keep going and going.
"When you wake ,and your mind flies forward to the day ahead,take a few moments that can powerfully influence your day. Set your inner compass. Consider what strengths you will need. Trust that you have them. Consider what values you may want to call on. Trust that they'll be there." Positive Thoughts
Love,
Stacy, Chris & Noah