Friday, July 29, 2011


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I'm still on my quest to find equipment for Noah. Unfortunately, I feel like I'm just stuck in the mud with my options and resources. We want to go to the Village Inn and eat out like other people get to do, but we can't because Noah doesn't have seating, I can't afford to buy him the Seat 2 Go out of pocket and I can't get help through Medicaid, and can't find any organizations that can help me. I want to get him adaptive spoons that have velcro straps to go over his hands to work on self feeding, can't get those either. I have to give the borrowed cuddlebug back in a few days, and there is no one out there able to help me purchase another $3,000-$4,000 mobility chair for him. I want to get Noah a Dukki Pediatric Commode Chair, and was told that Medicaid will not approve it because Noah has a shower chair and they consider them one in the same. I found Noah on the floor this morning, yet Medicaid won't allow him a Sleep Safe Bed. Finding foundations for help is like finding a needle in a hay stack. Sometimes I feel like I could do internet searches until the cows come home and still come up empty handed. I lack the time, resources and the ability to network efficiently to hold fundraisers. You watch your circle of friends and family dwindle as they realize that Noah's condition is not temporary and that our lives will be permanently and forever altered. I simply feel stranded. I have a child with needs and can't move forward obtaining any of it.

The only highlight is Noah qualified for an adaptive tricycle, and we are hoping that he'll be able to get the AmTryke-9xs soon. Noah of course does not have the ability to ride a bike on his own so his little hands and feet have strap on gadgets while we push him from the back. We are hoping though it will be therapeutic for him. His TAOS arrive next week. I am curious to see how that works differently from his gait trainer. I hear though I should expect him to flop over in it since he doesn't have trunk and head control. So I am really not sure how comfortable that will be for him if he drapes over it. But the orthotist thought it would be beneficial for him, so we'll see.

I was talking with a special needs dad the other day that has two teenage children that have I believe a neuromuscular disorder, I don't believe either one can self feed, I know they cannot reposition themselves, both are in power wheelchairs, and at least one is on a pulse ox while sleeping. He reminds me so much of Chris, this devoted dad and husband. I have such admiration and respect for them. Dads that would do literally anything for their special needs children. This dad sleeps on the floor next to his children at night so he can turn them, and be alert for their oxygen monitoring needs. His cell phone goes off not because someone is calling him but because he set the alarm to remind him of medication his children need. No one could ever comprehend how much love and devotion parents like us put into our children. We give up literally our lives for them. Not one thing is ever about us anymore. Yet you'll never hear us complain, we carry this heavy load and responsibility on our shoulders while attempting to project to the world we will be okay - even if we are crying on the inside, not because we've lost a normal life, but because we cannot fix our children. We are the walking wounded.

It grows increasingly difficult to listen to parents who brag about their children reading at four months old, being a "genius," bumper stickers that gloat and advertise that their child is the smartest, most talented human being to ever walk the face of the earth. They have no sense of what I would give to have my child just say one word to me, even if he could never read or never write, or if he could walk five unassisted steps, if he was even able to wrap his arms around me and hug me. I go through everyday feeling shattered and broken, I try to glue my heart together long enough to be the best mom I can be. I cling to wishes that with each new sunrise that Noah will do something remarkable that will inspire me to grow roots of new hope. The cycle is endless and I feel as if my soul is at unrest because I am always searching and trying to find ways to make Noah's life easier and better.

Luke's milestones are coming so fast, so beautifully and effortlessly, yet I haven't been able to record them because I almost feel guilty that I couldn't record them for Noah, I hold these dates in my mind. His first smile, his first laugh, his first rollover. They aren't written but simply etched in my heart. It seems unfair that one can do things that the other cannot. I feel that they both should be completely equal. I try to buy them both toys at the same time, even knowing that Noah cannot likely play with his, I already anticipate such guilt when I can offer Luke a piece of solid food, but can't for Noah. Luke somehow looks at me with these most patient loving eyes, reassuring me daily that we're all in this together. He allows his big brother to inadvertently swing his arm in the wrong direction, hitting him, or to unintentionally kick him. He already understands, as if God whispers to him you will be the most remarkable little brother to a very challenged older brother.

"We're not necessarily doubting that God will do the best for us; we are wondering how painful the best will turn out to be."
C.S. Lewis


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

Saturday, July 9, 2011

A Blessed Baptism

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Today Luke and Noah were baptized. For those who have followed Noah since birth, you may remember that Noah was baptized at Children's Hospital when we believed that his time with us would be short. However, there were certain aspects to the ceremony that we were not completed for Noah, the cloth and the candle. So today we finished the ceremonial part of his baptism along with Luke's entire baptism. I was so glad that Noah was able to be included, his baptism was sad and difficult for us, and this made things feel a new. Noah had his proxy Godparent there, which comforted Chris and I to have someone there for him.

They each wore matching outfits, that Luke's Godmother purchased for them. They looked absolutely heavenly, and I do mean heavenly. It was a very small baptism, but it was a beautiful day. The kind of day I will always hold dear in my heart. There were only two people that attended to celebrate the boys. I've always said if you have at least one person who loves and cares about you in this world that is all that you need. And Chris and I love Noah and Luke so much that I pray we can make up the difference for the missing family members that wish not to be a part of their lives. Luke's Godmother got the boys a beautiful cake from Das Meyer, our favorite cake bakery in the whole world. All great occasions are always extra sweet with a Das Meyer cake.

Noah did beautifully in church, I really do think Noah has this connection - this deep knowledge that comes from his thirteen minutes struggling to get back to us. To be around Noah is a divine kind of love. And Luke he brings up the rear with love and understanding to accompany Noah's great gifts.

Luke's Godmother wrote an incredibly special letter for Noah today, the kind of letter that makes you all teary:

Dear Noah,
From day one you have been a light to this world Not many can say they have inspired people to pray, to trust in God and to believe in miracles as you have. The way the eyes are the window to the soul. Through yours it seems as though we can see God himself! As we celebrate the completion of your baptism today, I wish you peace, love and all God's blessings. There's a song I sing to myself when I think of you. My favorite line... "God danced the day you were born."

Isn't that the kind of letter that just makes a mom melt? (And Luke's letter was just as beautiful). How blessed I am that I am able to share this little boy with so many. What a privilege it is that God trusted me to care for two of his little ones.


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

Thursday, July 7, 2011

Life's Storms

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Today is Chris and I's wedding anniversary. I woke up to a beautiful blooming red roses and a card that made me all teary. Noah looked at me in his highchair ready for breakfast and smiled as if he had been keeping his daddy's surprise a secret. I turned to him and said aren't they pretty and he laughed in delight. It is really hard for me to get out with both boys so I had no present for Chris. I thought all day long about what I could do for him. The easiest thing I could think of was picking up dinner from his favorite place, Texas Roadhouse. The only problem, they don't do curbside service, so I called them up in hopes they would do me a huge favor and bring out my order to the car so I didn't have to load up Noah and Luke to get inside. I spoke with Becca the manager, who answered the call, I explained Noah was special needs and wondered if they would bring the food out to me, and apologized for any inconvenience, she said she would be more than happy to help us and to call back when I was ready to place my order. I was so excited, to be able to get Chris his favorite meal, since we really are unable to dine out without Noah having a proper chair to eat from.

I packed up the boys and headed out only to find myself half way there in a tremendous storm. Suddenly without warning, the car was overwhelmed with blowing winds, hail and rain so hard that I could see nothing in front of me. Noah began to panic and scream in fear, he quickly took his eyes off his Elmo DVD, and remained fixated on the windshield with terror. I also was fearful, being with both the boys and caught so quickly with this storm. The clouds were swirling and I had no idea if I was facing potential tornado without shelter, and the streets immediately began to flood. There was no where to pull over, so I kept going, I only had a few more blocks to go before I had made it to my destination.

I called Texas Roadhouse when I arrived and they immediately brought my food out to the car in the pouring rain. The waitress was soaked in a matter of seconds. My car window had let in a huge puddle of water that drenched the side of me and the entire car door. The only thing I had to help me absorb the water was a size 4 Huggies Natural Diaper of Noah's and it gets a five star rating for the amount of water it absorbed. Way to go Huggies!

If you patron Texas Roadhouse off of 52nd & Wadsworth in Arvada, please give that manager an extra thank you the next time you go for being a person that has such kindness, care and willingness to help a mom like me. Tip them extra big. They deserve it.

The drive home was nothing less than eventful, the streets under the overpasses had begun to flood and I had to go through two of them. I was blinded by water from other cars and the rain and I could not judge how deep and if I could make it or not. The water had made it to the doors of the car, but thankfully, I made it through, as Noah screamed on while inside I was doing the same. I knew that God had brought us to safety when the sun came out all the while the rain continued it's downpour. It created a foggy type of light, and Noah closed his eyes to rest briefly, something he never does in his car seat. That is what God's love feels like. The love during the storm. He is always... always there. And he continues to get me through some very difficult things in my life.

It was definitely the most challenging anniversary present to date. Next time I think I'll check the weather channel before leaving home. We really put Noah's sensory issues through the test. Poor little guy will probably sleep extra well tonight from all the anxiety and fear the trip created for him. And We give our thanks to God for seeing us through and keeping us safely in his hands.


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

Friday, July 1, 2011

A Joovy Kind of Love

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Noah's eyes are looking much improved and he seems to be feeling a lot better. The Orthotist came and measured his feet for new shoes, sure-steps and a theratog suit. Now we are getting ready to measure Noah for a TAOS orthotic system. It's kind of like a walker, but is made a little differently, and the good news is we can actually have it because it is not billed as a gait trainer, it is billed as an orthotic. Sometimes it is just nice when you know you can have something and insurance won't tell you no. I am hopeful that Noah likes it and that it will help him in the walking department.

Noah is starting to like Luke more and more each day. I was feeding Luke in my arms and Noah was in his highchair trying to gently play with Luke's feet with his own feet. It was sweet. Noah was doing it really gentle, so I knew he wasn't trying to kick Luke and that it was purposeful movement on his part. Noah also watches Luke in the bouncy with curiosity. The bond between them is growing. Luke is very beneficial I think for Noah. It was a gift for him to be blessed with such a loving and patient little brother. They seem to compliment each other nicely.

We were finally able to obtain a double stroller for the boys. We had to find one that would work for Noah primarily. It is a side by side, with a huge canopy shade because Noah still has trouble adjusting to the sun. It is called a Joovy Double Stroller, and it is working beautifully for both boys. I had to put a Snuzzler in Luke's side since he cannot sit unassisted yet and is very little, but it is working out great. I don't know if I'll be able to get through all doorways. The doctor's office has a small door and ironically no handicapped button to push for it to open. It is frustrating when I run into places that don't have that button for doors. I never realized how needed it was until Noah.

Thank you for all the well wishes for Noah's speedy recovery. Reading his comments and caringbridge guestbook entries always warms my heart and fuels me when I need it most. God finds a way of connecting me with exactly who I need to get me along my days on this journey. Thank you all for taking the time to come and read about Noah and caring about our family in such beautiful ways.


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