Sunday, November 25, 2012


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Noah Releasing a Balloon for Brayden

Brayden's Bee Balloons

We released balloons today for our little friend Brayden who passed away ten days ago to participate in Brayden's memorial. I decorated with little bee's for Brayden who always helped us to remember to always Bee-Lieve. The little bee that will keep flying high in our hearts and hopefully will be one of the many angels that will help look in on Noah and guide us from time to time. Somehow I kind of think Noah new exactly that we were doing. I sensed it. He's a very loving and connected soul. One doesn't have to be verbal to understand.

Noah had a beautiful Thanksgiving. He ate lots of food and as always his favorite was the pumpkin cream cheese pie. He's certainly a pie lover. It was a quiet day which was very nice. Sometimes you just need a quiet, loving day and that is exactly what it turned out to be. Nothing was on a time-table, we let the turkey be our guide for dinner hour. It was the first time I decided to brine a turkey. I watched a late night special on PBS promising the most moist turkey one could ever eat and decided I'd take on the task. I must say, PBS was right. It was super moist - hands down the moistest turkey I've cooked. Yet was warned that when you brine a turkey it would cut down the cook time by 1/3 so I watched that bird like a hawk not completely knowing a concrete completed cooking time. So by letting the bird be our guide as when dinner would be served it created a rather relaxed atmosphere. It was kind of like how we exist with Noah. We let time be his guide. And when he's ready then we're all ready.

Noah's daddy was able to install the train around the Christmas tree on Thanksgiving which remains hands down one of Noah's most favorite holiday activities. He finds it especially fun to roll over and continually derail his train. And Luke cautiously guards it as if he knows he must not touch Noah's beloved train. Although I have detected that Luke has contemplated putting a wise man on the track and we certainly need all the wise men we can get, so I'm making sure that no nativity members are run down this year.

Chris temporarily took down a baby gate to the kitchen and dinning room entry way for Thanksgiving which made me feel like I had a little more freedom with Noah's new hi/lo base chair. We were able to go at least between two rooms without being completely stuck in the kitchen. I've quickly grown rather attached to the hi/lo base chair and any initial feelings of sadness that I associated with it have dissipated. For the first time I was able wheel Noah over to the refrigerator and freezer show him the contents inside. Show him what a bottle of milk looked like - where his yogurt was stored. I also put the chair on the highest setting and Noah watched by my side at the counter as I peeled potatoes and stuck them in a pot full of chicken stock. These are activities that he couldn't do without this chair. And for the first time I feel like he's being able to be included in daily activities more than ever. The possibilities seem endless. He can now even come to the counter and watch me make Christmas cookies and goodies. He was even able to watch me unloading the dishwasher and where the silverware goes in the drawers. Having him being able to finally be included in life's smallest moments is doing my heart a world of good.

Each day the excitement over the arrival of Noah's service dog grows. We found him the cutest little birthday bag with a Golden Retriever on it for his birthday at the dollar store. It's perfect and we're just so excited for this new chapter in Noah's life. It's going to be a very sweet 4th year birthday celebration. We've come so far in 4 years from bringing home a little boy that no one said would survive... we have so far to go, but we're doing it.

In loving memory of Brayden we will always keep Bee-Lieving.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Friday, November 23, 2012

I Know Different

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A poem: I KNOW DIFFERENT by Tricia Proefrock

Dear mommy, I have felt your tears, falling on my face. Someone else might think they are tears of sadness, because of what I can't do...I KNOW DIFFERENT.

I know those tears pour from your heart out of gratitude for me, because of what I CAN do: I can love everyone in the purest form possible. Unconditionally. I can be judged, but will never judge in return. I know different because I feel, in your hugs and kisses, that I'm perfect just the way I am.

I have seen you hang your head down in shame, when we go out on adventures. Someone else might think you are ashamed of having a child like me...I KNOW DIFFERENT.

I know you are ashamed of the grown-ups who ignore me, yet talk happily to all the other children. The grown-ups who won't look you in the eye, but stare at me, when they think you don't see. I know different because I've seen the many, many more times you have raised your head up high, with pride, because I'm yours. 

I have heard you whispering desperate prayers at night. Someone else might think you are asking God to make me a typical kid...I KNOW DIFFERENT.

I know you are thanking Him that I got to be here, with you, for another day... exactly how I am. I know different because I have heard you ask me never to leave you. And I have heard you cheer for me, every single day of my life... you tell me I don't need to be typical to be amazing, I just need to be here.

I know you have a big job, taking care of me. I know your body hurts, because I'm getting so big. I know that more than anything, you want to hear me say your name. And I know you worry that you aren't good enough, and that you will fail me...BUT I KNOW DIFFERENT MOMMY.

I know that even on your worst days, you will always be enough for me, and I will always love you more than you know. ♥


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Wednesday, November 21, 2012

You're a Blessing

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Parents of children with special needs know more than most that every child is a gift worthy of thanks, every one, the ones who thrive and the ones who strive, whether they become our legacy or we become theirs. But on those days when there doesn't seem much to be thankful for, or others are suggesting that your child must be just a burden, or well-meaning people suggest giving thanks just for healthy kids. Your blessings will always be fully counted. Other parents may take the gifts that their children bring for granted. Not you. Not ever. 
Wishing you all a Happy Thanksgiving filled with lots of love, memories and blessings. 


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Tuesday, November 20, 2012

A Time of Thanks

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Noah in his New Hi/Lo Chair
Noah's Hi/Lo Chair without Tray
There are some days where I wake up and think there aren't enough hours in a day to accomplish all I must do for Noah alongside tending to regular household duties. I almost need five of me. Noah had therapy yesterday and he was a bit cranky. Who knows why... sometimes he feels like working - sometimes not. We gave him a quick lunch and then his equipment vendor came to deliver the much prayed about Hi/Lo base feeding chair. This seating system I thought would never come - one I had anticipated a long drawn out battle with Medicaid for. Finally feeding safety for Noah. It did come needing some adjustments like a shorter footrest, different head rest accessories and a broken lateral piece, but it's fully functional and those are things I think can be easily worked on that will take minimal time. Noah had his first meal in it last night and breakfast in it this morning and it went well. It has a lot of buckles and I struggled a bit as it's new to me and something I have to learn. It's a bit hard to look at this big bulky thing in my kitchen and realize that Noah needs something like this for his daily living needs. It does look way more "handicapped" looking than his special tomato seat, but I know he'll be safer in it and that I know he can't fall out of it. But I look at it and my heart still aches. It's like all this equipment is weighing heavy on my heart that somehow it's just a constant reminder of how severely affected Noah truly is. He wasn't one of the lucky ones that simply got away with only a mild limp or a speech impediment. Noah is completely dependent on me for every single aspect of his life. And I just can't help but wish things were different for him. He should have had a body that worked - he should be running around the Christmas tree trimming it with me.

The equipment vendor also brought Noah a trial walker but it was too big, so we'll have to wait on a smaller model. I remain hopeful that it is still a piece of equipment that might work for him. We're also trying to troubleshoot more recent problem development with his Britax Boulevard car seat that he has now started to get his head out of the headrest blocks and leave his head hanging sideways while I'm driving. Something both scary and a huge safety concern. It sounds like a appointment is likely in our future to explore some options. We don't have a handicapped accessible van and we can't afford one, so a car seat is our only option right now. We will also need to give some thought in the bath chair department for Noah as I think he's really outgrown the First Steps Baby Highchair that I was using in the tub for him.

Our house feels like it is closing in on me - literally. Noah's pieces of equipment are cumbersome and heavy and we lack wide doorways, and hard flooring in our home and even the storage or a place to house all of the things he needs for daily living. It takes two people to lift his feeder chair or stander anywhere which means they are pretty much stuck in a particular room and stay parked there. I need a mudroom for the dogs so I can eliminate the baby gates... we need a ramp... we need a handicapped accessible house and our current home is anything but. Dear Santa please bring me a house stretcher and handicapped accessible home!

We are growing increasingly excited about the arrival of Noah's Service dog. We've think we have a name picked out pending that the company feels that they've chosen the perfect dog to match with Noah. And it still looks like Noah's dog will arrive around his birthday or the week of Christmas. It of course will mean lots more hands on work for me as I work with this dog to pass puppy good citizen weekly training tests until it leaves home for many months for advanced skill training and to pass all testing and obtain certification. Which I am sure will be hard on Noah and the family emotionally as I know we will fall in love only to be a part for many months. But hopefully our love and sacrifice will bring great rewards.

Noah is ready to gobble down a big Thanksgiving dinner in a few days. I got Noah a little shirt that says: "I'm thankful for pie with extra whipped cream, turkey and mashed potatoes, and seconds please." Although Noah still enjoys his Thanksgiving pureed he sure does love this time of year and chows down with the best of them. And now he has a safe chair to enjoy his meals in. Dear Lord, as hard as this all is for me, thank you for answering that prayer.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Friday, November 16, 2012

With Heavy Heart

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The last few weeks have been a little hard. I thought I'd start decorating for Christmas a little early this year. In all reality it takes me weeks just to decorate the Christmas tree as I can't just do it all in a day with tending to all of Noah's needs and watching over a very active little brother. So if I started in December the tree likely wouldn't go up until January! I was doing really well with it all until I stumbled on this silly bear that was stashed away in a rubbermaid container - it was a the build a-bear that Noah was gifted with in the NICU. All the children who were in the NICU during Christmas received a build-a-bear. I picked up that bear and it was like a lightening flash of emotions that just ripped through me. It's the pain that never goes away - you live with it each and everyday - you just tuck it away tight so you can keep going. And that darn bear was the key that just happened to unleash the flood gates of emotion and memory. It still smells of the NICU. That somewhat sterile baby smell. But it's not a comforting smell - not the smell of baby lotions and fresh blankets - it's a haunting smell. Yet it's apart of Noah's early story and I can't rid myself of him. So I stuffed him forcefully back into the container as if I was punishing him for the reminder of where we had been nearly four years ago. I went about decorating the tree - it's still a work-in-progress. It's still rather naked with only lights and ribbon - I hope to have it done around Thanksgiving. But I'm placing no expectations on myself given the boys are still recovering from illness and their daddy has now fallen ill with the same cold. Thankfully thus far I'm holding germ free and being able to care for everyone.

 I've been trying to keep myself busy to erase the fact that I found that bear. I was doing rather well, until I received the news yesterday that another little boy that we've grown to love over the years in our special needs community passed away very suddenly. Little Brayden was born with Hydranencephaly and has defied all odds since his birth. He also has a pretty amazing mother who not only was one of the strongest special needs mothers I know, but also started the Global Hydranencepahly Foundation in honor of Brayden and those like him. His mother created the Journey of the Bees: Believing in the impossible - with the motto: "Aerodynamically, the bumble bee shouldn't be able to fly, but the bumble bee doesn't know it so it goes on flying anyway."  She has been one of the most loving mothers I've had the pleasure of connecting with. Little Brayden was only six months older than Noah, and she was so kind in gifting us with Brayden's thumb splints that he didn't need anymore and mailed them to Noah. Of course learning of Brayden's passing sent me to a very difficult place. I cried on and off for hours for a little boy I never had the opportunity to meet in person, but one that touched my heart in more ways than I could ever tell you. You fall in love with their stories, their parents, their journey. You know it well - you know the pain, the joy, the love, the heartache and worry like no one else could until you experience it each and everyday with a child. You celebrate their small achievements and accomplishments and cheer them on. You comfort each other on the difficult days, and you pray hard for each and every one of them. So it's rather devastating when one flies home to Heaven. And of course people bombard you with a million God quotes and tell you it's all God's plan - and you're suppose to not question it, accept it as some divine plan that He has in store. But you can't help but wonder what this plan is - how can you take a precious life from the arms of a mother? How can you leave her in a million broken pieces trying so desperately to resuscitate her child and keep him here on this earth. I don't understand it. I want to, I try everyday to wrap my head around it all - to accept the life we've all been given - to find purpose in it. To find a reason for the struggle. But I still want to know why. I lack the ability to ever make it okay for Brayden's mom. I can't bring her the comfort of ever holding Brayden in her arms again. I want to. I want to make it all better for her - for all of us.

 Sometimes I wonder how different the world would be if everyone knew exactly what it was like to raise a special needs child; if they could feel it - truly appreciate the journey - it would be such a more thankful world, one in which people didn't argue about trivial things, they counted each breath they took as a blessing and gift, they wouldn't worry about the wrong creamer in their coffee, a date that had gone sour, a car that had broken down... you quickly learn the true meaning of "Real Love" and what truly matters.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Friday, November 9, 2012

I Still Would Have Chosen You

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"If before you were born, I could have gone to heaven and saw all the beautiful souls, I still would have chosen you... 

If God had told me, "This soul would one day need extra care and needs," I still would have chosen you...

If He had told me, "This soul may make your heart bleed," I still would have chosen you...

If He had told me, "This soul would make you question the depth of your faith," I still would have chosen you...

If He had told me "This soul would make tears flow from your eyes that could fill a river," I still would have chosen you... 

If He had told me "This soul may one day make you witness overbearing suffering," I still would have chosen you...

If He had told me, "All that you know to be normal would drastically change," I still would have chosen you... 

Of course, even though I would have chosen you, I know it was God who chose me for you." Terri Banish.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Thursday, November 8, 2012

Package Surprise

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We are in the middle of battling the second illness of the season with both boys. I'm again frustrated as my lack of leniency with washing your hands upon entry rule is likely what caused this recent bought of sickness in my household. I'm always worried that I'll offend a therapist, professional or visitor by asking them to wash hands or make a point to remind them we don't accept ill visitors - but not anymore my backbone just got super tough after this last time. If you're offended then you don't have respect for me as a special needs parent who's working really hard to take the very best care of Noah. Surprisingly Noah is coming through this rather well, while his little brother hasn't been as lucky.

Yesterday was filled with some really great news, Noah's Hi-Lo Base chair was approved. I had all but almost thrown in the towel thinking it would either be flat out denied, and that I'd be unsuccessful in appealing. It will still take some time as it's now on order - but it's in the near future, and Chris and I are so relieved. Finally more feeding safety for Noah - we might even be able to progress to eating solids with better positioning. And he can now be on Luke's level since he'll now have seating that will lower to the ground. Which is going to be so nice for him. It's almost so exciting that I feel like I need to make a party cake!

 Now for the freaky news:
 After a few months of back and forth correspondence with Freedom Concepts and one of Noah's therapists to try to trouble shoot how to make his bike actually fit him and be customized to his needs without having about to fork over a few more thousand to do so, Freedom agreed to give Noah a smaller seat. There are still items like a neoprene lap belt and other accessories that I feel Noah needs but we simply don't have the money they want out of pocket to get those things for Noah. I was hopeful this might be a band-aid fix, although I know we have a long way to go to get this bike where Noah needs it to be for him, until the parts arrived today. Imagine my surprise when I answered the door to UPS to find that Noah's seat part was shipped in a box used to ship herbicide/poison. No joke.
Herbicide/Poison Box Used to Ship Spare Parts

It's unbelievable that Freedom Concepts would think it was appropriate to ship anything to a medically fragile child using a herbicide/poison box. Shoot it's inappropriate to send anything to a any child in a poison box. With all I've been through with this company over the past year I'm not sure I can recommend them to any special needs family. Very bad judgement on their part. To say the least the box remains unopened in my foyer because I really don't want to go near it. There never seems to be a dull moment in the land of special needs. Just when you think you've seen and dealt with it all. I of course have contacted the company but I'm not sure what their response or correction to this new problem will be. But this simply is not okay.

"What gives me the most hope everyday is God's grace; knowing that his grace is going to give me the strength for whatever I face, knowing that nothing is a surprise to God." Rick Warren


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

Thursday, November 1, 2012

Three Treats

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Little Shrek with A Big Shrek that we found Trick or Treating
Elmo and Hummingbird Pumpkins
Yoda and Darth Vader Pumpkins
Noah (AKA Shrek)
Noah's Halloween went well. He went as Shrek this year, which has been one of his favorite videos to watch lately. I did not try on his outfit in advance which was my mistake when I realized it was two sizes too small. So I did construction on it and cut the pants off it. I should have realized there was a reason it was so inexpensive and marketed as just "around toddler size." But I made it work, our entire life sometimes feels it's about finding ways around unexpected complications. He did okay with his Shrek hat, he tolerated it occasionally and then wanted it off completely at other times. Which is fine, it's all about his comfort level. We were invited to trick or treat with Noah's grandma at work down in Golden off of 13th & Washington. They close down the streets and let the kids go door to door at businesses. It was great fun in the early afternoon hours. And it was very busy. Lots of kid traffic. We even found a real big Shrek while we were trick or treating and we took a picture with him. So cute of big Shrek and our little Shrek.

Then we trick or treated for the second time in Noah's grandma's neighborhood because they have more accessible homes to the front door in a stroller. Noah ran into some little friends who gave him some glow bracelets and he was in awe. He got lots of goodies, that I'm sure he will share with his daddy. Then our third stop was our neighborhood. We went to only a handful of special neighbors on our block as it's all we can do to get the stroller up some of the stairs in our area. We got some interesting "treats" this year from pennies in a little purse to a nail file. Gives new meaning to make sure your check your children's candy. People were more than generous with the boys and I don't think I've seen so much candy in our house...ever. We carved two pumpkins this year - a Elmo Pumpkin and a Hummingbird Pumpkin, and Chris of course couldn't help himself with his Star Wars Yoda and Darth Vader pumpkins. They were having a war in our garage for a week with their light sabers. Sometimes you have to really bathe in the simple laughs to get through the day.

And now we get to look forward to Noah's favorite times of year, Thanksgiving and the most important his birthday followed right by Christmas. We also received news that Noah's service dog will likely arrive around his birthday or Christmas. We still owe a balance of $800, and are continuing fundraising efforts for the balance and the continued costs associated like vests, patches, leashes, vet visits including spay/neuter. We are really excited that we are fast approaching this beautiful goal of obtaining a very special dog that will help Noah with his daily activities and alert us to Noah's individual needs. It sounds like that blessing is right around the corner for him. And we are excited about this new adventure in Noah's life. It comes with so many possibilities even down to helping Noah with communication. My biggest hope is that people will be more likely to actually "see" Noah and not look past him. That they'll see a little sweet boy with a dog and turn just to smile at us. Noah needs to know he's accepted into the world just like any other little boy. Thank you all for your continued prayers and thoughts for Noah. It means so much to him and our family.


Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.