Put a Little Spring in Your Step

Yesterday was the first day I attempted taking both boys on a walk by myself. I tried to gather all the things that would prepare me for making it around the block and back... water, keys, garage door opener, a receiving blanket for Luke to block the sun, a bottle for Noah in case he screamed and I needed something in a pinch... got the stroller ready, put Luke in then car which was close to the stroller. Put Noah in the stroller strapped him up, quickly snapped up Luke in the snugglie as fast as I could as Noah hates to wait and gets upset quickly. Rushed out the garage door and down the street like I knew what I was doing. I got four houses down before I realized I had no shoes!

So I throw the stroller in reverse only to toss the garage door opener out of the stroller as it shattered into several pieces. As I bent down to collect all the pieces to put the garage door opener back together the strap on the snugglie came undone. I couldn't re-hook it without taking Luke completely out and starting over. So one handedly I scramble to put the garage door opener back together only to realize I killed it. Thankfully I had remembered a set of keys, as a back up plan. So I run back unlock the doors feverishly all the while Noah is starting to whine and gearing up for a tantrum if I don't hurry, and I'm still holding Luke with one arm since I lost the left side of the snugglie support. Find some flip flops and we're on our way.

I'm surprised I just didn't give up and call it quits. But I kept going and we made it all the way to the elementary school up the street. It was field day. It didn't make me as sad this year to watch the other kids playing as it did last year. I think for me it was more of one last tour of a goodbye since the school is permanently closing due to budget cuts. It would be last time I'd ever see school kids playing there. The end to a piece of my childhood. It was okay to say goodbye, it was closing the door to memories of a little girl that had no idea what lay ahead for her in life. A time when life was innocent, sweet and easy.

I walked one last time where I learned to skip double rope, where I threw sand on the slide, where I fell off the monkey bars and landed in the nurses station, where I watched Blair whip out his boy parts on recess and pee in the tunnel. I passed the bicycle cage where the bikes were kept during the day, visualizing mine and how proud I was when I decorated the spokes with paper ribbon in red white and blue to match my patriotic outfit for a elementary school parade. I remember the tree that little five-year old Emily and I sat under when she told me her mother died of cancer, and I cried for the first time for another human being as we hugged. The gazebo that no longer exists that I would eat popsicles under. And the field where I let my monarch butterflies go that Mr. Waddingham had helped us hatch from their cocoons. I could still in my mind hear the bells ring and the sounds of happy squeals. I could see my small self lining up in order to go in to wait my turn for the drinking fountain. Life was truly beautiful then. What a wonderful little girl I was. I was precious and I miss those tender years in a lot of ways. I'm glad I didn't know then what life would be like when I got older. I am glad I enjoyed every beautiful moment that was brought to me, and that I had no worries. What an easy and wonderful childhood. I can only hope that my boys have a childhood that is filled with such memories.

After exchanging some hugs and conversation with a friend that I once worked with that I see from time to time that was watching her child participate in field day, the three of us headed back home. The walk back was slower paced. I had burned all my energy. My left arm was heavy from supporting Luke's weight that the snugglie had failed to provide. My right hand sweaty from being the only hand to push Noah in a stroller. I had wanted to drink the water I brought but failed to have a third hand to do it with so I trudged on. Me and my two boys. I think I was a bit lonesome on my walk. Sometimes I feel as if I am walking all alone. But I wasn't really alone because I am walking this road with these two sweet boys. Just the three of us.

Love,




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

Sure it Hurts...

Today, I had to go shopping for necessities, so I bundled up Luke since I'm his only food source, and my mom for an extra set of hands, and Noah and daddy stayed home to cuddle and take a nap together. We bumped into an old friend that we hadn't seen in years, she didn't know much about Noah other than I had an older child. Probably through the grapevine as people talk. I'm sure I'm quite the topic... the girl up the street that went to school with so and so that had a "damaged child"... did you hear? We explained Noah and having quadriplegia cerebral palsy. She was completely un-interested, in Noah. She went on and on about her "normal developing" grandchildren how they run and run and she can't stop them, how they tug at her hair and are busy and into everything that are Noah's age. As my mom quietly says, Noah may never walk. Yet she kept going and going, and said it was great Luke was fine. Some people talk around it. I tried to read in her eyes was it because the topic made her uncomfortable? No. Was it because she didn't know what to say to me? No. It was because her perfect life trumped my non-perfect life. After all how does one go about bragging about a child that cannot sit, crawl, talk, walk or even self-feed? Saying my child is able to roll about on the floor doesn't entitle me to boasting rights like other parents. I used to think I represented a parent's' worst fear, that I'm a prime example of what could happen. So they could not go there in their minds to discuss it let alone comprehend what life for me must be like. But the more time goes on, I just think some people are plain flat out ignorant and insensitive. There are no good excuses for some.

The question everyone seems to be asking: of course Luke is fine. What happened to Noah is not my fault. It is not Chris' fault. It is automatically assumed that just because Noah has cerebral palsy that Luke does too. Cerebral Palsy is not genetic. And it hurts to hear people say well at least you have Luke. No, at least I have both of my children. Both boys. Just because you have a typical normal developing child it does not erase or ease the pains of a having a special needs child. Suddenly you have a normal child and no one wants to acknowledge Noah's existence they only want to ask how the one that doesn't have problems is. It doesn't just make everything all better. I will still grieve the loss of my first born's motor skills, I still will ache for him and all he should be able to do until the very day I take my last breath. Watching Luke do things Noah should be doing is difficult. I want those same things for Noah, how can I not? Luke will grow up attending therapies, and watching his parents work with their older brother, it will never be like most households.

I've continued to struggle to find a way to pay for upcoming hippo therapy for Noah. It's frustrating when I hear other special needs parents spending hundreds to have their nails and hair done, off to the spa, off to the Caribbean for a vacation while respite care tends to their child, still while receiving fundraising funds... all these wasted thousands of dollars that I only wish I had for therapy purposes. I've never had a massage, can't have my nails or hair done, there is no pampering, no vacations in our future. But that is okay. It doesn't bother me, I am not jealous. I don't want those things. But what I do want is the opportunity to help my Noah. And I can't. I would love to be like the rest and have all this extra money floating around plus whatever else fundraising provided. It feels like some of these families are double dipping. If you have the money to go on a Caribbean Cruise then why are you fundraising? Cancel your fancy vacation and use it to help your child. I can't think of the last time I bought a pair of shoes, or make-up, or anything for myself. And I hear the excuses "you need to take time for yourself." What time? There is no time for me. There never will be. My days are consumed with therapies, and tending to a child that is in no way self-sufficient. I don't have the luxury of trying to potty train my two year old, or reason with him over why he can't have a toy, or communicate with him about being sick. I don't have anything that resembles a normal life. Just because a new baby came along doesn't mean life got all lolly... it is still the same hardships it was before, the only difference is there is another beautiful soul to love and a sweet little brother for Noah, a built in friend who won't look at him any differently. Luke, unlike the rest of the world, will see his brother for what he is, not what he isn't because he won't know anything else.

I've learned I can't change the way people respond to me having a special needs child. You can't force someone to feel things they don't, you can't educate them, you can't replace a cold heart for one that beats with love and understanding. Sure it hurts... but there are lots of things in life that hurt. You just keep picking up those broken pieces of your heart and you carry on.

Love,




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

Time for Therapy

I've been trying to balance mothering a special needs child and a newborn. It's much like probably having a twins, trying to feed both at the same time, soothe two crying at the same time, carry two at same time. Except Noah is much bigger, and harder to care for than a little ten pound baby. Noah is at least able to look at his little brother now without a meltdown which is improvement. Luke of course has adored Noah from the beginning and is just patient and quiet.

I of course have also been on a mission to figure out Noah's therapy. Which is very time consuming. His doctors and therapists have recommended Noah enroll in hippotherapy as they think it will help his trunk and head control more. They recommended a place close to us, which costs $750 for every 10 weeks. And Noah would need continuous therapy there year round. Which added up is thousands. Supposedly DDRC (Early Intervention) pays for hippotherapy but when the center contacted DDRC they said the budget could not help our family at this time. Insurance won't go near it, which leaves Chris and I on our own for funding. I don't know whether to find some type of fundraiser, or grant or where to start. When you are told your child needs it, you just have to find a way... somehow. We meet with the ranch for hippotherapy next weekend to do a meet and greet of the therapists and horses to get Noah aquainted. I really think he'll do quite well, he made a great horse connection last fall at the pumpkin patch and showed no fear and the horses took to him immediately. His doctor even was hopeful that it may even prompt speech to start. Which would be a dream come true.

I've also been trying to figure out a better way to get Noah to be more calm at meal times. He gets overly exicted and his arms just go everywhere, knocking spoons out of your hands, the food gets dumped if it gets too close to him, the dogs are loving it, but clean up is terrible. For the longest time Noah has hit his knees on the highchair tray, so we took it off, I found knee pads deisgned for crawling children, to put on him so we can try the tray again in an attempts that it may help limit some of his arm movements and that he may try to learn to pick things up off the tray. I also found a gadget called the Tumzee recommended by a friend that also has a son with special needs. http://www.tumzee.ca/
It is designed to help Noah with his hands and head in crawl pose. I hope he's not too big to fit into it. I'm also going to try hanging the Wingbo swing my mom got him downstairs to see if that type of motion will spur any type of crawling effort.

Always trying to think of ways I can better help him. I still always feel like it is never enough. That Noah has the potential to get better if I could only provide him with all the therapy and equipment he needs. Noah has been doing well with the Ipad. I've found some great sites that offer free apps on a regular basis, since we cannot financially afford to by apps for Noah. Babies with Ipads, Moms with Apps, and A4CWSN (Apps for Children with Special needs). A4CWSN is having an apps party June 11th at 9am, where you can score lots of apps that you could not otherwise afford. http://www.a4cwsn.com
Everyone that attends the app party is guaranteed at least one app that would cost money to otherwise purchase for special needs.

The Two Angels Foundation 5K walk is this Sunday. I don't think I have what it takes to run after having a baby so soon, but Noah was invited to attend the special needs adaptive dash, which I think he might really like to do. He's a bit older now and his daddy could run him to the finish line in a stroller, maybe next year he'll be able to do it in his gait trainer. That would be fantastic. It is a great cause and I would encourage all those in the area to participate and run for such a good cause: http://www.twoangelsfoundation.org/id17.html
They also serve a light lunch, goodies and refreshments after the race, and it really is a wonderful opportunity to meet other special needs families and children.

Noah is refusing to walk in his gait trainer, I fear maybe I got him the wrong one. He seemed to walk fine in it at therapy that one time and I really thought he needed somewhere to place his hands, where the kid walk did not provide for that, but I see all these other kids his age walking in gait trainers called the Pony or the Mullholland, or even the kidwalk and I start to doubt whether I made the right equipment choice for him. There are so many things out there, how would I know what is the best for him? All I have to rely on is what therapists tell me may or may not work. And now I'm stuck with this Rifton Walker and what if he never walks in it? What if I failed and he needed the Mullholland or the Pony? Now I'm just out of luck because insurance won't fund something else.

Please continue to pray that I can find a way to get Noah the therapy he needs, I'm trying not to stress about how to do it, and just letting God take the lead, it's all I can do, it's kind of out of my hands. I've tried all avenues I know to try.

Love,




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

A Grandmother's Love (Happy Mother's Day)

Before Noah was born, my mother loved him. After he was born she loved him even more...

When our lives were shattered with Noah's diagnosis, my mother found a way to hold us all together. We felt the loss of many friends and family members who were unable to cope with our circumstances, yet my mother stayed by our side, and constantly reminded us we were not alone. She has dried the tears that Chris and I both have cried and shared in our small joys. She's hugged us both during some of our hardest days and nights. Encouraged us every step of the way that we were doing a good job with Noah. She never waivers with hope and faith and continues to believe all things are possible. In the middle of the night you can often find her snuggled next to Noah. She comes at all times of the day to soothe a distraught toddler and to help his overwhelmed and exhausted parents. She holds our hands through hospital visits, and accompanies us to all emergencies, even holding her small grandson's hands in an ambulance ride.

Knowing our ability to get out is harder than most, she often shops for us, tends to errands and picks up dog food on her way home from a long day at work. She gets up hours early before work to come assist me in getting my morning started and help with Noah, knowing that it makes her day longer and more tiresome. She gives of her heart and time so freely, never expecting anything in return. When she looks at Noah it is with such intense love, that she sees no physical limitations, she speaks to him when words do not exist. She's learned how to carefully feed, clothe and bathe his fragile and floppy body, and learned to protect his head as he fumbles to find control. She holds him when he's upset and rocks him to sleep so ever gently in her arms. His long body stretched out across her lap, as she holds him as if here were still the tiny baby we brought home. All the while looking at him with such awe.

Noah is never off her mind as she comes home with clothing, and supplies, and diapers for him or toys that might help him with his development, all the while she lets her own wants and needs go to provide for this tiny little person that she adores. She has immeasurable patience for Noah, never getting upset that he cannot do something or requires extra help and attention. Never once has she ever spoken an ill word, gotten upset with him, or given him an unfavorable glance. She is Noah's earthly angel guiding him the best that she can. We are so blessed that she is along this journey with us.

She did not stop mothering when my brothers and I were grown. She's continued to love us and provide for us the best she can even into our adulthood, sticking by our sides always, unconditionally, and without limits. A mother's job is never done, it's never over, it is death do you part. And my mother has embraced her special needs grandchild with open arms, loving him beyond all words. She is amazing, and everything I hope I can be for my children now and always.

My mother has taught me that we are equal in this world and that no one person is ever better than another. She's kept me humble, even when my goals and dreams were soaring in the clouds. She's comforted me during my mistakes, and taught me how to learn from them. She's taught important lessons like "you can catch more bees with honey than vinegar", "patience is a virtue," and "good things come to those who wait." She has demonstrated on giving without receiving as she often gives her last pennies away to those she sees on the streets, is willing to talk to a stranger that has no home or gives a ride to a stranded person in need. I have learned from her example. She has taught me to love thy neighbor no matter what and to find at least one good thing about each person I meet. She has helped mold and craft me into the person I am today.

Without her important life lessons, like "put yourself in someone else's shoes," and "To never judge a book by its cover," I wouldn't have been properly prepared for raising a child with special needs. Because of her I have tried to become a person who is kind, patient, non-judgmental, fair, honest and loving. She's taught me to hold my head strong even when the odds seem against me, she's taught me to stand up for myself and for others when I see wrongdoing. She's given me the confidence and love to continue to grow as a person, to not limit myself in only what I know today, but to encourages me to seek out new personal growth in each day, to learn something new, and most of all to count all my blessings. I give my thanks to her today and everyday for the special person that she is.

"A mother is the truest friend we have, when trials heavy and sudden, fall upon us; when adversity takes the place of prosperity; when friends who rejoice with us in our sunshine desert us; when trouble thickens around us, still will she cling to us, and endeavor by her kind precepts and counsels to dissipate the clouds of darkness, and cause peace to return to our hearts." Washington Irving

With Love,







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

Noah Becomes A Big Brother

Noah's little brother, Luke Everett Warden arrived on April 11, 2011. Chris and I had decided to keep news of Noah's pending sibling private until after his birth, and celebrate the arrival of new life once he came. Luke is a little miracle of his own, surviving a car accident with me last fall. God has a plan for everything and he wanted Luke here. Noah isn't quite sure what to make of little Luke yet. But hopefully with time they'll be the best of friends. From the moment I looked at Luke I had this little voice almost say, he's your little lion, he will be here to help Noah, to protect him to guide him. So that's what I call him my little lion. Not to mention that he has this blond hair, a surprise to both his daddy and I.

Luke Everett Warden "Our Little Lion"

I must admit my emotions are running high. I feel so blessed to have both boys in my life, yet I significantly twinged when I witnessed Baby Luke being able to suck on his fingers and hands at only four days old, something that Noah cannot do at nearly two and a half years old. There are obvious differences between the two babies I have brought home. And I suppose I fear Noah's future more now than I ever did before. I had nothing to measure it against. Now I see exactly what Noah should have been doing at this tiny age. It's so bittersweet, but I feel so robbed of Noah's babyhood. I had no idea that babies ate and went to sleep, I only knew a fitful distraught baby that never soothed to anything.

We saved Luke's cord blood and tissues with the hopes that someday we'll be able to use them to help Noah in his recovery. A very expensive task we took on to store these stem cells, yet we felt that we couldn't just throw this potential opportunity away for Noah in the future. It may make a huge difference in his life one day. This is something has significantly put us in even further debt, but I figure it can't get much worse than where we are, we basically have nothing anyway. And I thank goodness that there was one last open charge card for such a thing. We really have no idea how we're going to pay for it, or even the annual storage fee, but we felt like we couldn't let this opportunity to pass us by if it could indeed help Noah. They are currently doing sibling stem cell trials for cerebral palsy and expect clinical trials to be over in two years or less. Luke's tissues provided 855.40 million cells that we could save. And I pray with every ounce of my soul that someday somehow, Luke will have provided the medicine we needed to change Noah's life. What an amazing thought that a younger brother could make such a difference in his older brother's life.

Noah is doing much better with his illness. I think we are over the worst, yet I am watching him, guarding him, to assure that he doesn't have a relapse. He's on a second round of antibiotics, since it's a bit harder for him to clear his lungs than children that are mobile. I'm sure the days ahead will be a bit stressful as I figure out how to balance two boys, both that are not self-sufficient in anyway. I've had to put therapies on hold because I know that I cannot get both boys to therapy on my own, I have no help. Chris and my mother both return to work, and there is only me. God must have a plan, and I hope that he tells me what direction I'm supposed to go in. I feel a bit like a fish out of water - Just taking each day as it comes it's all I know how to do. It's all I've been able to do for the last two years, and I continue to ride this roller coaster called life. Mine isn't easy. Maybe it never will be, I don't know. But I'm still hoping God shoots those special arrows my mother was telling me about, those special arrows that come with just a little help to assist me along the way.

There is no doubt that things will be difficult, but it is my hope that there will be far more joy on the way. I'm hoping that little Luke will help Noah in ways therapy may not be able to. It's like I'm experiencing this completely high joy from Luke joining our family, to this really high low looking at Noah feeling the loss of all his motor skills, a helpless mom as I watch on as he simply can only lay on the floor and look up at me and smile. I long for God to help me now more than ever. Please help me heal my Noah. Please grant us all some sort of a resemblance of a normal life, please just give us an easier path, please hear my prayer. I keep asking, and asking and asking some more. Noah is the most precious little boy ever. He lights up dark corners of my days with a smile and laughter so big, he is so deserving of the blessings to be able to walk, and talk and sit or even crawl. I long to watch both my boys run together someday side by side. Please God let it be so.


Love,



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

Still Sick...

Noah is still struggling to get better. His cough is now pronounced, although not tremendously frequent. His appetite has been affected, he looks droopy and sad, sometimes I can catch a short smile or laugh in between the cries and moaning. I understand that he is sick, but I can't understand what he wants me to do when he cries. He can't tell me if he's uncomfortable and needs to sit, or lay down, or if he's hurting. I feel like I'm grabbing at straws, as is Chris and his grandma. All three of us taking turns trying to get Noah back to a good spot. I got him to eat cheesecake, he'll drink bottles really only for his daddy, and then there's nothing like falling asleep in the comfort of your grandma's arms. The fever has stayed down, I just assumed Noah would be more perky by now. I worry about him, hoping that pneumonia is all we're battling. They've checked his mouth, and ears and all... but I always worry what if there is just something else I am missing. This is truly a hard spot to be in, harder than I thought it would be when the time came. The lack of communication for me breaks my heart. I want so badly to talk to him... Even with Chris' help I'm down to mere hours of sleep, I cannot stop thinking about Noah and clinging to every sound on the baby monitor, counting his breaths to make sure he's receiving enough oxygen. Making sure I have a phone nearby should I have to place another emergency call for help. I of course am too still battling this illness, the same one I probably gave to him as much as I tried not to. He loves the taste of his antibiotics, which is great. We have no battles over taking medication. In fact when it's done he even gets a little mad that his dose is over and protests briefly. Like I've just taken away his cotton-candy treat. I worry about him not being able to clear his chest and cough things through like other children his age that are mobile. Without us he's stuck laying on the ground continuously. I'd feel so much more at ease if I could see signs that he was completely improving, but just like me, I'm sure this will take him a while to recover from. My hopes are that he'll battle it off quicker than I have been able to. I could tell Chris was a little sad over dinner tonight, he tries really hard not to dwell on Noah's condition, but it's hard to realize that this will be life-long for Noah and for us. He mentioned he'd do anything to make Noah okay and take away all his problems. And he would, this excellent father with an amazing heart would do anything... just anything for his "little buddy." As I write, they are currently snuggling together. As I can hear Chris whispering in his ears sweet nothings in an attempt to help soothe him to sleep. At the end of the day we don't have much, but one thing we're not short on is the love we have for each other. "Anyone can give up, it's the easiest thing in the world to do. But to hold it together when everyone else would understand if you fell apart, that's true strength." — Christopher Reeves Love, Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.

104.4 Happens... and then you Pray

I knew I couldn't dodge it forever, I wanted to, oh God how I wanted to for safety's sake. The idea of a seizure is beyond terrifying. Noah developed an illness. He didn't look sick, didn't really act sick. But I knew something was wrong when he didn't laugh at the television and acted really lethargic all day. He was hard to wake from a really late nap, which was completely uncharacteristic for him. So I asked Chris to dig out the thermometer out of our hall closet that I stashed way at the top just in case. Sure enough temperature reading of 102.9 at 8:30pm. My stomach sank. These things always seem to happen at night. So off to the hospital we went in the middle of the night. Noah showed no signs of congestion, so I didn't know if this was an infection or what I was up against. They took his temperature when we got there, and it had decreased by mere points. They finally were able to get a normal reading two hours later, and after a strep test, ear check and xrays it was determined that Noah had developed pneumonia. I was surprised because there was no cough to accompany it, but maybe I caught it so quickly there wasn't a cough to go along with it. We were relased of course at almost 2am in the morning, leaving Chris with only a few hours of sleep to function on. Noah's grandma came with us, as we needed all the hands we could get with an ailing Noah. He's getting so big it takes multiple people to hold and pass him off to. My little village of three...Chris, Grandma and I. They couldn't send me home with medication so I of course panic when Noah wakes up this morning with a temperature of a 103. 1 and rises to 104 within twenty minutes. I called Noah's grandma to see if she could find any place that was open to get Advil or Tylenol. And to fill his antibiotic prescription for me as Noah is too sick to leave the house like this. Of course off she went, even though it left her late to work. When something is seriously wrong with Noah it impacts the whole family in big ways. No one really understands, we don't have respite, or a nurse or nanny. We are it. And Noah isn't just a typical child with an illness. This is the first time I truly wish he wasn't non-verbal. Just be able to tell me what is wrong, he doesn't have to say mamma or dadda, just where does it hurt? Where do you not feel well.... I've gotten Noah's fever down to 102.1 for the most part of the morning and then he just spiked suddenly again to 104.4. His primary care physician said that they thought I should take Noah straight back to the hospital and so off we went again, as I called home the troops since they said we could be staying. The thing about ER visits is there is nothing quick about them. You wait and wait and then wait some more. The verdict is still that Noah had pneumonia and that we will alternate tylenol and advil every three hours to attempt to conquer this fever. And of course at the hospital Noah exhibited his first signs of cough. I probably won't sleep for days now as I watch over him praying that God spares him from seizures and allows me to get him well. I wish I could have post-poned this day longer. But you just can't control every little germ on earth no matter how hard you try. And I've tried hard for 27 long months. I've worked so hard to make sure he stayed as healthy as he possibly could. We are very tired, as we've spent more time at the hospital these last two days than we have slept. It's been a rough week for Chris and I. Please pray that Noah will conquer this quickly, and that seizures continue to stay away. He looks and acts so miserable and I just want to see him eating and smiling back at me again very soon. Love, Noah's Miracle by Stacy Warden is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 3.0 United States License.