Wednesday, December 25, 2013

The Pink Shawl

Bookmark and Share
Noah had a beautiful Christmas, each year he grows with excitement - the same anticipation that other children experience on Christmas.  His brother tenderly helped open his gifts and often shared gifts that were intended for him and gave them instead to Noah.  There is so much love under our humble roof.   Small blessings that truly a gift from God.  Noah received some really amazing gifts from loving hearts, and he adored each one.  So much thought went into his gifts and they match him perfectly!   He was happy the entire day, full of laughter and excited squeals.

Just when I thought my heart could swell with no more love for the gift of happiness in my children's eyes, I opened one last gift under the tree.  A little wrapped package with a card attached.  It was a from a friend that I acquired shortly before Noah's birth, in a mommy-to-be group.  And we've kept in touch since that time, often sharing life's ups and downs -  mostly always being a listening ear and a long distance hug.   I opened the small card and it read:

"On hard days, wrap yourself in this shawl and know that you are not alone.  You have people all around the world who love and admire you and who wish they could do more to lighten your load.  And God is always there for you too, even in the moments when it doesn't feel like it.  And on good days, you can wrap yourself in the shawl and celebrate.  I'm praying for many good days ahead.  Happy 5th Anniversary of being a truly magnificent mother!  You work harder, fight harder, love harder than anyone else I know.  This is a prayer shawl for you, from our church's knitting ministry.  The person made it prayed for the recipient as she made it, and I prayed for you as I chose and wrapped it."

The card that describes the gift: " O Loving God, Renew and strengthen the person who receives this shawl, today and every day.  Grant them peace to lighten life's journey and provide hope to sustain them.  May this gift of yarn and prayers woven together be a sign of Your loving presence.  Hear our prayers for the one who uses it, that You would surround them with tranquility when they are afraid, understanding when perplexed, warmth when they are weary, and peace when they feel uncertain.  May this shawl remind them that they are not alone.  Amen."

It was the most meaningful and special gift I received.  The true heart and gift of Christmas.  That one gift brought me such feelings of comfort and of being loved during all of the hard times in life - for all that I experience.  It felt as if God sent me this care package via the heart of another to remind me that I'm indeed not alone and that through it all I can continue to find hope in all things possible.  My pink shawl to carry me through all the pain and the joy.

I pray that you all felt that kind of powerful love this holiday season, it is the kind of love that will carry you into the new year to find strength and courage to assist you through life's journey.   Merry Christmas to all.


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

Monday, December 16, 2013

Noah Goes Firefly!

Bookmark and Share
Undoubtedly it goes without saying that I'm in love with so many exciting products coming from the UK.  Imagine our excitement when we learned of a great new product being offered now in the USA called the Firefly!  It's going to be incredible for parents who have a child who cannot sit unassisted in a chair, a grocery cart, or swing.  It is truly a must have item if you have a child with special needs.  It will be available in two sizes, size 1 and size 2.   The size 1 currently doesn't have an adjustable headrest, but still offers a great deal of support.  The size 2 will have an adjustable headrest that will continue to aid and benefit those children who lack in head control and have a tendency for their head to go side to side.   This chair is amazing.   The price retails for $275, which in the land of special needs makes this one of the more affordable products than most and arrives within 72 hours of purchase!
The Firefly Seat

We sat Noah up in a kitchen chair, he also can sit now in grocery carts that have the toddler seats in front, and even mall shopping carts.  Something he couldn't do before.  It opens a whole new world for parents who aren't forced into traveling with a pediatric stroller or wheelchair.  Parents with multiple children will especially love this product as it gives their child with special needs more freedom to participate alongside their able-bodied siblings.   I seen this video the other day of a dad that adapted a remote control toddler car for his son which special needs and both siblings were able to ride and play side by side.  This is exactly the kind of thing the Firefly seat will be a true blessing for.  Firefly is a brand of products designed by Leckey to support and enchance special needs family participation. I've been so impressed with all the products produced by Leckey that Noah has.  And they are a company that genuinely cares about their customers and needs.  It is often rare to find a company that listens to what the community needs, and Leckey does just that.  Many of the products they carry are coming from the ideas of parents who have children with special needs.   More companies need to follow their lead.  They are blazing a great trail.  And as a result are producing pieces of equipment that are essential to improving the lives of children with special needs. 
Noah in the Size 1 Firefly!

The seat is very lightweight and it travels well, and snaps in fast.  The really great thing is that it hugs the child from the sides and gives them the shoulder support they need to sit comfortably upright.  This is great for even children who usually need to sit at a reclined angle in order to be comfortable.   We've been through a lot of equipment with Noah and this one gets 4.5 stars, and only because I think both models could likely benefit from an adjustable headrest.  Leckey is a company that cares about making a customer, not just making a sale.  Something the special needs community needs.  The Firefly would look amazing under the Christmas Tree gift wrapped with a bow!  It will make the new year for you and your child easier and more comfortable.

Here is the link to check out this amazing product:


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

Saturday, December 14, 2013

The Magic of Santa

Bookmark and Share

Santa represents the concept of kindness, peace, giving and unconditional love.  He brings about memories of  the perfect cup of hot chocolate with miniature marshmallows on a cold winter's day, the sound of "I'll be Home for Christmas" dancing in your mind, the perfect doll that you wanted left under the tree.  Santa brings beautiful anticipation and hope in all things possible - the magic of Christmas.   He is the gleam in a child's eye and the excitement that resides in a tender heart.  A true representation of all that is pure of childhood innocence. 

We often forget that magic that touches our lives as we grow older, and somehow that spark is again discovered when you have the opportunity to re-live that magic through the eyes of your own children.   Noah has always adored Christmas time.  Santa, elves and reindeer creating laughter in a child often as early as July of each year.   Noah is what inspires us to even put up the Christmas tree and decorations earlier and earlier with each passing year.   His laughter and excitement entertain our hearts as parents with unbelievable delight.  We remain forever grateful that despite Noah's tremendous challenges that he is happy and he knows that he is loved - the joy he finds in the smallest of holiday spirit is an unbelievable blessing. 

Today our friends at North Metro Fire Department gifted Noah with a visit from Santa at home.  They sent for Santa all the way from the North Pole, and coordinated his visit with a handful of loving helpers to visit him and his little brother.  It's a such a special moment when you see that fire truck pull up and know the love that has just arrived for your child that can't otherwise visit Santa comfortably or safely at a mall.  Santa had the coolest sunglasses today.  He came in the afternoon when it was still daylight.  Santa rocks his shades!  He had an amazing team of volunteers who were filled with such love and kindness.  Santa held Noah, while he enjoyed playing in his beard - a sensory seeking thing he's always loved to do.  Santa was so patient and understanding of Noah's needs and brought him and his brother some really neat airplane toys that launch.  Santa launched it into one of his helpers and we all were a bit surprised on how powerful that toy really was!  It gave us all a really great laugh as the rest of Santa's helpers tried to take cover just in case Santa decided to aim that airplane again! 

Noah's little brother, Luke, wasn't so certain of Santa this year.  The first time he's really showed any apprehension about Santa, but also likely the first year this is all starting to make sense to him now that he's older.  It took him a little while to warm up to the idea of sitting close to Santa but he finally was able to do it, which gave Noah even more time to tell Santa his wish list.  I think Noah rather preferred to have Santa mostly to himself.  We were all able to take pictures of Santa and his team outside our house.   Santa's team was so sweet, a little boy in the neighborhood came out to see what was going on and Santa and his team gifted him with a firefighter hat and Santa told him he'd be back for him as well Christmas Eve.   There are moments in life where you feel your heart could often explode from the little happiness that other people create for your difficult journey.  They see only a child that they want to help at the holidays - a child worth just as much love and kindness as the next.  I pray they all with be blessed with the same blessings they have bestowed up on us today.  They are building memories for us that we will treasure forever with Noah and his little brother.

"They err who thinks Santa Claus comes down through the chimney; he really enters through the heart."  Paul M. Ell 


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

Wednesday, December 4, 2013

Blue Miracles

Bookmark and Share
After lots of fundraising efforts, we were finally able to purchase Noah a PPod and Nessie from the UK.  Something that didn't come without it's own set of challenges.  We had waited for several years for the company to be willing to ship to the USA.  And finally they were able to ship the PPod and Nessie.  The PPod is a specialized posture bean bag for comfort sitting that also offers both support and great hip comfort.  The Nessie is a posture pillow that aids in tummy-time, weight bearing on arms and assisting with encouraging a child to lift their head.   

As with most things in our lives, the PPod and Nessie didn't come without some challenges along the way.  We've been dealing with Fed Ex International/USA Customs for about two weeks.  They wouldn't give the products clearance to be shipped in the USA.  The first agent said it was because it was labeled "durable medical equipment" another agent said because they had concerns with the "beans" in the bean bag portion of the chair.   I truly couldn't get a true answer to the hold up, but after networking with another special needs parent in the UK who had connections to UK customs and a old friend here that worked for Fed Ex, help came and I'm relieved to be able to say the PPod and Nessie arrived today just a few minutes after 10am... two blue pieces of amazing equipment - Miracles!
Noah's PPod

Noah loves it.  His soft little body instantly melted into the soft fabric and he giggled with delight.  Worth all the tears - all the hard work it took to get it to him.  I think I likely should have ordered a larger size, and without a doubt a 5 point harness for it - why I didn't inquire about a harness is beyond me.  I think I was just so overly excited I honestly forgot that little detail.  I am praying it is an accessory I can order after the fact and that I didn't need to order it at the same time I did the PPod seat.  I also think Noah needed a large size Nessie and not the small.  Not sure about my exchange options as I haven't been able to connect with the company yet due to the time change difference.  I'm hopeful we can work something out, but I'm sure it will involve more money and it sure took a lot to just get this far.   But I have faith God will help me find a way.  

Even though the Nessie that was sent is too small, Noah was able to get his head up for brief periods using it.  Something that will be so huge for therapy purposes.  I wish things like this existed here in the USA, we truly need them here.  But I'm so thankful we can import them in - even as difficult as that process was.  
Noah's Nessie

Noah had a wonderful Thanksgiving.  Our entire family dined at Zolo's Southwestern Grill, and every table had a child in a wheelchair.  For the first time in my life I didn't feel like we were the elephant in the room.  Everyone was just like us.  The food was amazing.  The best cranberries I think I've ever had, with a creamy pumpkin pie with homemade whip cream that Noah adored.  And they even made a plate for Noah that we brought home and pureed for him later.  He loved it.  The whole experience did my heart a world of good.  And we will forever remember the blessings of that kind and loving restaurant. 

Noah is now gearing up for his birthday and Christmas.  He'll be turning five this year.  It's such a big number for me - five.   I'm so blessed to have this child in my life, five years later after they said he'd never survive.   We are planning on having the same photographer who took Noah's goodbye photos when we took him off life support take his fifth year photos.  We have come so far. 


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