Wednesday, December 30, 2015

Noah's 7th Birthday & Christmas 2015

Bookmark and Share
Noah had a really wonderful birthday.  He certainly made sure we realized it was his day as he required extra attention all day long.  There are some days when Noah is content playing by himself and gets annoyed when you pay him too much attention and then there are days when he's exceptionally needy and wants you to change out his DVD's every 1/2 hour, hold him, rock him, wheel him around, play games with him, and not leave his side.  His birthday was one of those clingy days.  And I'm glad his birthday was a day when he wanted extra love.

His Mickey Mouse themed day was sweet and he adored his birthday decorated cheesecake - a yearly tradition since Noah can easily consume cheesecake and is his all time favorite treat.  We sang Happy Birthday twice, because once for Noah is never enough.  He has such awareness now at age seven.  His realization of wanting to blow out candles but can't.  The urge to hold and touch a birthday cake... but can't because his waving hands will knock it to the floor... one of us lightly holding down his hands so he can do his best to blow out a candle, or bring the cake close enough for him to hold it.   The quest as parents of course to make a birthday as normal as any other child would be able to experience.

This was also Noah's first year in his GoTo Seat Floor Sitter by Firefly.  He's always had to sit in someone's lap to open gifts or be with us as a family on the floor.  But this year, Noah got the pleasure of unwrapping his own presents sitting on the floor and not having to be cradled in someone's lap.  It was a new experience both for him and for us and he really enjoyed it.  In fact, so much so that he was a bit upset when we couldn't keep him supplied in gifts to unwrap.   It made the world of difference for how he enjoyed his birthday and Christmas.  It is one of those products that you think how did I my child ever live without all these years?

Noah also was gifted with the cutest little cookies for his 7th birthday from Mia's Cookies.  We had the pleasure of meeting Allie, the owner, at the Birdies for Butterflies fundraising event earlier this fall.  She makes the very best cookies and it was so special that she thought of Noah and helped us celebrate his special day.  Airplanes happen to be one of Noah's favorite things, she even sent some Minions which Noah and Luke absolutely adored.  It's the littlest things that build the biggest memories.

Christmas came in a flash. I think both boys had a memorable Christmas. We genuinely owe thanks to countless people for providing our children with gifts under the tree.  Something we couldn't have done on our own without the loving support of our community and foundations.  Christmas blessings that made their holiday something I know they will cherish for years to come.  Noah has several favorites.  Of course the Minion Guitar that Santa brought that Luke insisted that his brother wanted; Beat Bo, Fisher Price Beat Lights, A Musical Mat, Piano Touch Pad and an interactive Bear that talks to him, a dolphin light and sensory bob frog.

This year was the year of the dinosaurs and superheros for Luke.  It's interesting to watch a typical child like Luke transition in toy interest, when Noah's very much stuck at age seven in a toy category that is interactive or deals with lights and sounds.  Cognitively Noah understands and he still has an interest in dinosaurs and superheros just like his little brother, but he has a hard time playing with them and can only bat them around on the floor or look at them when Luke temporarily abandons them on the floor within his reach.   I do wish though that we had the ability to gift both boys with age appropriate gifts.  Noah's to a large degree sometimes still feels like we lean on the baby side of toys.  It's not because his brain is developmentally in a baby stage - but because his body physically is.  There are so many things I'd love to make better for children with special needs - one of them being a growing toy line that is priced within a any parent's reach that caters to children like Noah who have physical limitations but the mind of a typical aged child so they aren't stuck in the baby toy isles their entire childhood.  

Noah ate a ton of food.  So much I still am amazed where is tiny little stomach put it all.  It was likely two adult servings pureed and he scrapped that bowl clean - and had desert.  It was a mixture of ham, heaping spoon of mashed potatoes, demi glaze, buttered carrots, 2 dinner rolls, 3 garlic and butter roasted brussels sprouts and 2 deviled eggs pureed together.  You might think wow all together how can that be good?  But it did taste wonderful as I always do a taste test before serving it to him.  And it was a really yummy puree.   People might not realize the efforts that go into making pureed meal combinations.  Things you might think might not be paired well can sometimes wind up making the best purees.  He even topped off dinner with Christmas English Trifle and Chocolate Cherry Pudding Pie.

Chris did he honors this year of taking down the Christmas tree and decorations, sparing me from all the work and maybe the flooding of emotions that comes with the holiday season.  He worked incredibly hard delicately wrapping each ornament in tissue paper to protect them and boxing it all up for me.   It offered me much needed relief.  Something so small was so big and I'm so appreciative of his efforts and help, it was like an elf came a long and just scooped it all up and made it disappear.  Everything still feels a bit out of order, but that is likely because my mind is working on overdrive.  While I think of marching into the new year, my biggest wish is to have less stress.  I'm not sure that's a realistic expectation when you're a special needs parent.  It's something every parent longs for, but by the nature of the battles we fight, the challenges we face to help our children live the best lives they can, to be their voice, and to make sure we're on top of every hiccup to make sure that all is okay - it's like having the weight of the world on your shoulders at all times.

But I'm trying to hold promise in 2016 that through the power of positive intention and asking for God to be my guide, I'll be accomplish amazing things for Noah and the special needs community.


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

Wednesday, December 23, 2015

Leaving Behind Six

Bookmark and Share
Perhaps I made the mistake of discussing Noah's birthday plans with him the right before bedtime.  Even though Noah is non-verbal and I'm having a one-sided conversation I often underestimate how much of what I'm saying he's paying attention to at any given time.  Casually mentioning his Mickey Mouse cheesecake would be arriving, and how we'd be decorating and having Mickey Mouse paper plates and napkins, and how maybe we'd order in food just for his special day seemed to have cost me much needed sleeping hours.  Noah was up until 1am before deciding to close his eyes to get just a few winks of sleep.  He'd go in and out of being whining to get our attention so we'd rush in to turn him over or see what was wrong, to celebrating with happy squeals as soon as we entered his room.  I suppose he thought we should get his party started last night.  Of course Noah's need to be disruptive in the night also keeps his little brother up, who is annoyed that he shares a room next to noisy Noah and then Luke starts his own late night drama feeding off of Noah's.  

Next year I think I'll just surprise Noah instead.  And not talk about all the fun stuff to look forward to the next day.  I'm not even sure I want to tell him what day Christmas Eve is - Santa will be doing circles above our house half the night because Noah will be up.

My attention and focus has been all over the board this month.  Per typical December style for me, it hasn't been easy.  An appeals hearing for another Medicaid denial, there is always a court battle I march fearlessly into, meetings, hearings, research and time invested in trying to protect Noah from a cell phone tower that was voted in by City Council that will be detrimental to running interference with his medical devices and put him at life-threatening health risk with his sensory processing disorder.  There are of course I think a host of other problems and neighborhood concerns that haven't been adequately addressed or considered with neighborhood and homeowner impact.  Yet at the heart of it is Noah for me, and I'm feeling helpless and beside myself.   Then there is Christmas, the heavy weight of the holidays.  And trust me I've done my best to pour myself a cup of eggnog and sprinkle myself with holiday cheer, but something still feels like something is missing.  I'm just simply muddling through it.  I've even asked God to send me a little relief and a hand up.  Even though I know it's in his timing, not mine.

Situations around me feel beyond my control.  A feeling that is not at all helpful in the emotional baggage that I still carry with me seven years later.   Although I do give some thought to Luke's birth on his birthday its not to the extent that I do it with Noah, and with Noah there's such trauma there that it's like picking at an open wound and making it bleed.  Does healing come in he number of years?  No.  And I'd certainly have a bone to pick with the person who says time heals all wounds.  I rather share the same sediments as Rose Kennedy, "It has been said, 'time heals all wounds.' I do not agree.  The wounds remain.  In time, the mind, protecting its sanity, covers them with scar tissue and the pain lessens.  But it is never gone."

Yet, the blessing shines bright which is Noah's life.  Seven years later for a child expected to die after being removed from life support, is bright, beautiful, healthy, thriving and most of all happy.  Seven beautiful, bittersweet, incredible years with this amazing human being.   He is a gift to all those who know about him, love and care about him.  He often feels like my guide to something much bigger than we realize here on earth.   Like he's the key to all of it. 

I decorated the kitchen with items my mom found at the dollar store for him, and I know he'll beam as soon as he wakes up... which could be hours from now since he partied into the night.  I sit here peacefully listening to the tick tock of a clock that hangs on our wall feeling like time is standing still but yet moving so fast at the same time.  I hope he has the best seventh birthday I can give him.


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

Monday, December 14, 2015

The Love in Santa's Hug

Bookmark and Share
Santa was always incredible in my childhood; but has been beyond exceptional in the childhood of my children.  It takes a really special person to be able to see past Noah's challenges, to love him anyway - to accept him anyway.  Santa brings this beautiful magic and Christmas spirit into Noah's life during the holiday season.   Noah has always embraced Christmas as his favorite time of year.  The time of year when the impossible always feels like it can become possible.  Where dreams become real and the magic feels endless.  Because of Noah's extreme sensory challenges and the need to keep him away from overcrowded public places that can breed a host of germs that could be a health threat for Noah, we always try to find ways to invite Santa into our home or visit him by personal appointment. 

Although I didn't attend my high school reunion this year, I still managed to reconnect with friends that were a part of my life years ago.   A high school friend named Molly had mentioned her father (who was our math high school teacher), was now Santa.  I'd like to tell you that somehow this was all chance.  But it's not.  There are so many things in life that we want to chalk up to coincidence but the ways in which we connect and situations that come to be are orchestrated by something much bigger than ourselves.  Molly, growing up I know had her own challenges.  She was born with a cleft lip and pallet, but that was never the first thing I seen.  I always thought Molly was very pretty.  Even to this day in pictures she's incredibly beautiful and doesn't at all appear to be aging! I imagine her challenges made her spirit as beautiful as her exterior.  And it felt really wonderful to reconnect with her.  She probably doesn't even know how much I cared for her all these years later. 

I honestly thought maybe it would be a long shot knowing how busy Santa is this time of year with his calendar I asked her if her dad would be willing to do a home visit for Noah and Luke.  Without hesitation she coordinated finding a time that her dad could be available to visit Noah.  

Math was never my strongest subject.  I was good at a lot of things, but math was never one of them.  And to this day I often find myself counting on my fingers trying to make sure no one notices and guessing at approximate percentages off when shopping sales.  Although I managed to pull off a great grade in his class because of my dedication to remain in the running for Valedictorian, I did struggle and had to work twice as hard as many of my peers did in order to pass tests.   I rather envisioned that Santa would remember I wasn't his strongest math student and would wonder how I was getting along with only being able to minimally add and subtract. 

Years later I don't think it mattered to Santa about math not being my best subject.  His eyes gleamed and his smile was big and bright as he seen the little boy he came to see laying on the floor when he arrived through our door.   We thought that Noah and Luke would both love to sit on Santa's lap together.  Noah gave it a great college try, but in under a minute on Santa's lap his signature sensory gag reflex presented itself.  Possibly an indication of being overly excited, or perhaps he didn't want to share Santa's lap with his little brother.  Some of Noah's sensory triggers are still a mystery to us.  

Santa didn't bat an eye, nor did he take it to heart.   He looked at Noah so lovingly and with tremendous understanding and decided that he'd simply join Noah on the floor where Noah was most comfortable.   Santa brought two books with him and a bag full of miniature candy canes.   He opened up his first book The Night Before Christmas and started to read to the boys.  Luke on one side, and Noah sitting on his daddy's lap on the other.   Noah's face lit up and he began to smile, laugh and squeal with delight.  Santa carefully showed Luke how to unwrap his mini candy cane and still have it partially in the wrapper so he didn't get his tiny fingers sticky.   Luke following directions from Santa and Noah giggling with every Ho, Ho, Ho. 

Magic filled our living room.  And somehow I felt like I could hear every angel in existence singing a sweet Christmas carol right into my depths of my heart and soul.   Santa finished his first book and then moved onto Olive, The Other Reindeer.  When you're watching this sweet interaction for just a brief moment in time all feels right with the world.  In all the mess of and complications the holiday season brings, there was this blissful moment with my boys and Santa huddled on the floor together.

Santa was so very patient and had explained that he had been to Children's Hospital earlier in the day where he was in a little room and was able to talk to sick children via a monitor in their rooms.  So he understood fully the gravity of what we were dealing with.  Children as often medically fragile as butterflies.

Luke is a bit shy and a tad cautious of everyone... including Santa.  Although he did back into a hug and told Santa that Noah would really like a Minion with a Guitar, and that he wants a Tonka Police Car, Polar Book and Five Avengers which he whispered as if it were a secret.  We're not quite sure how Luke knows Noah's wishlist, but each year he tells us what Noah wants.  I think it's brotherly telepathy.  Which is good because Luke sometimes knows what Noah needs or wants before I do.  Luke is a very serious child, partially I think because of having an older brother that has a severe disability.  He doesn't often kid around or joke and does not yet know how to lie.  His innocence an equal match to Noah. 

Luke was really inquisitive of Santa as to where his reindeer were.  Santa explained that his reindeer only fly once a year and that he was driving his Subaru until then. Luke and Noah seemed to like that clarification. Santa's goodbye hug filled with an abundance of unspoken words as I told him how thankful I was for his visit.  His simple, yet tender and warm reply was "I know."

Luke watched Santa drive away at the window, and Noah beamed with happiness. Maybe our Christmas will be really small this year, but it's so big in so many other ways.  Christmas is not for dwelling on all that you've lost but for counting the blessings for what you still have.  Remember to always keep a warm and open heart and spread all the joy you can all around you.


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

Tuesday, December 8, 2015

A Special Needs Christmas Nightmare: The Elf on the Shelf

Bookmark and Share
Let's be honest.  My life has a enough chaos to it.  

The ever popular Elf on the Shelf that seems to have taken over Christmas traditions well after my childhood came to an end, fills social media sites, newsfeeds and holiday pictures swarm around that ever naughty elf.   And he's never up to any good.  He's a royal pain in the ass.  He's spraying mirrors with bleach, he's picking on the family dog, he's eaten all your favorite m&m's that you were rationing until Christmas.  I mean really could he be any more of a special needs parenting nightmare?

Unless he's going to sprout some compassion and real help - not just reporting back to Santa like the mini stuffed tattle tale that he is, or helping me get up a thousand times in the night to turn Noah in his sleep or check on his breathing, or help me spoon feed him during the day, or play with Luke when Noah needs my undivided attention, calling SSI to bark up their Christmas tree, or threaten not to send Medicaid a Christmas card unless they waive the most recent over payment - then he simply isn't invited and I'm not giving him a key to wreak havoc on our household.

Facing the facts are important.  It's all I can do to put up the Christmas tree weeks before Thanksgiving because Christmas is a sensory treat for Noah, think about how I'm going to afford even just one adapted toy for him which is five times the cost of a toy that we'd purchase for his little brother at any toy store, and contemplate making Christmas cookies, sending out Christmas cards, and finding some sort of inner Fa-la-la-la.   The last thing I want to be doing is coordinating and reprimanding an overly precocious elf.  It's just not on my special needs parenting agenda.

Let's not forget the most important part of Elf on the Shelf.  He's creepy.  Even dressed up now in the Claus Courture with Elf Pets makes that elf higher maintenance than my child with special needs.  My child would take one look at him and guaranteed it would give him a sensory gag reflex.

Hats off to the parents that find him fun, weird and entertaining.  But this special needs parent is going to stick to the old school way and just let Santa handle the naughty and nice list without his little mischievous Elf on the Shelf.


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

Tuesday, December 1, 2015

Nessie & The Miracle Mat

Bookmark and Share

When we ordered Noah's first Nessie along with his PPod from Specialised Orthotic Services, I under estimated how big Noah was and ordered him a small one.  While it never fit Noah super well I did find ways to make good use of it, for as long as I could.  When you have a child like Noah positioning of any kind is always helpful - even it if it's something that is a bit on the small side.  Two years later, Noah graduated from the small Nessie into a large!  

For those unfamiliar with what a Nessie is and does:

"Nessie provides a novel approach to positioning during therapy simplifying the practicalities around such activities for therapists, parents and carers. The established range of primary positions associated with physical play therapy can all be achieved using NESSIE. This can include ‘tummy time’, sitting, side sitting and side lying. NESSIE is easily transported around, so you can always have it available at any time. The covers are removable and washable. The unique contours of NESSIE allow safe secure positioning."

And along with it came the Miracle Mat.  A customized embroidered soft mat that reminds the both of us to never give up on miracles.  It might sound silly, but that mat holds a lot of powerful significance.  It was an unexpected personal touch that represents the continued miracles in Noah's life.  Physically, he continues to work hard in therapies, working on gaining head, neck and trunk support, trying to learn to brace himself to sit if only for mere seconds at a time, trying to weight bear and hold his legs steady and straight in an assisted standing position.  He never gives up, and he never grows tired of trying.  His perseverance is amazing.

Noah's new Nessie also has another great feature that his smaller one didn't have.  It has a removable EVA foam cover that is fantastic to have on the Nessie to protect it from Noah's occasional drooling when he's on his tummy.  Easy to wipe clean.  It is the same foam material that his SOS bath seat is made out of and it's really great material.  Not only is it comfortable but it's really durable.  The new Nessie is heavy, but incredibly sturdy.  There is no way that it would ever tip over or move. 

The first few times Noah used it he actually was able to go from his tummy and flip himself over into a semi-propped seated position.  It gave him just the support he needed in order for him to find a different way to position himself.  It also is fantastic for encouraging Noah to look up and lift his head to work on head and neck control, while still offering him a soft landing for when his head and arms need to take a break.

There isn't one single product that hasn't just been absolutely incredible that we use for Noah from SOS.  In fact, I continue to hope and pray more than I can ever tell you that their merge with Drive Medical will eventually result in Specialised Orthotic Service's entire line being available for USA purchase and insurance funding.  I still dream of being able to get Noah the T-Max Shower/Toilet chair and the MSI Seating  System and Sleep Pod.  Right now the only products available for US sale are the P Pod, Nessie, Equipoise, Bath Seat and our Toilet/shower Seating System. Although, I don't think any of them carry an insurance code as of yet, so it's out of pocket costs.  It's my hope that Noah's Medicaid waiver will assist me in the new year with the roller base for Noah's PPod so we can roll him around the house without having to take him out of it to go room to room.

SOS also has great customer service and are really wonderful to work with.  I've enjoyed all my contact with them.  They are so prompt in answering my questions and helping guide me on making the best fit choices for Noah.  I appreciate their help, kindness and love for children like Noah, immensely.


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