Roots and Wings

 

A little over twenty-one years ago, I was thrust into a world where even if you see it coming, you can't prepare for it and if you don't see it coming, you can't even imagine surviving it. I had a baby that was only 27 weeks along gestationally and due to a placenta previa, his birth was both traumatic for him, and also life-threatening for both of us. To put it simply, both his and my guardian angels were working overtime that night and I am sure, they had to call in reinforcements. His entrance into this world, however, touched, and dare I even say, changed, all who worked on him and loved him, and all these years later, he is still having that effect on all who work with him and love him. 

Of course, I am referring to the Incredible Mr. David.

Funny thing, but when you are focused on certain things in life, and I mean truly focused, you don't often have time to see the forest for the trees. You become pretty obsessed with where your focus lies, and you can't hardly see anything else, including the passing of time. I just realized the other day, that for the last 21 years, I have been extremely focused on an almost single-minded in the upbringing of David, and I have not properly prepared myself for him to hit one of the biggest (and maybe for him THE biggest) milestones of his life. David is graduating from high school tomorrow, and I am so not prepared.

 

Yes, of course, I knew in theory that graduation was on the horizon, but I never focused on the reality because there were just too many variables to allow myself the inevitability of such a milestone. Instead, I stayed focused on the day-to-day, especially when the day-to-day often held challenges that might impede David from getting to that coveted milestone. 

For those of you who know and have followed David's story, there have been no guarantees in life for David since he took his first breath. For those of you just meeting David, I invite you to go back and read the past blog pieces here. It has been a bumpy ride at times. In essence, though, David was born extremely premature with many health issues. He was diagnosed with Cerebral Palsy and a list of lifelong chronic issues that had the potential not only to hold him back but also to take his life at any time. His rather rough entrance into this world, ended him up in the NICU for five months, each day more precarious than the next. So many times we were warned that the likelihood of him surviving, let alone going home was nil. Miraculously though, he did come home. 

Not long after David came home before he even got to truly know his dad, we lost his dad to a brain aneurysm and from that moment on, it was me and only me left to take care of him and ensure that he not only continued to survive but also to thrive, and over these last twenty-one years, that is all that I have focused on. Some of my efforts have been better than others, but through it all, here we are today, on the cusp of him becoming a high school graduate. It is almost overwhelming to look back and see where we started and to now gaze upon where we are in this moment. 

Through the years, I have had so many people say, "Lisa...look at what you have done," or "He wouldn't be here without you." The truth is though, that while I may have given him roots, so many others have helped him grow into the strong young man he is, and let's not forget David's own tenacity and strength. He started fighting the moment he was created and to this day, he has never stopped. 

The day I lost my husband, I thought I had lost everything, but most especially, my rock and support where raising David was concerned. A year later, I lost my mom (David's biggest fan next to me) and it was then that I felt truly alone. How had God entrusted such a soul as David with me, and left me to do it all on my own? Of course, He had not left me to do it alone. I soon realized that I had friends who would become family, along with therapists, doctors, and even complete strangers who would become friends step in and step up at times when I needed them most, whether I realized it or appreciated it at the time. 

David started in our local primary school at 3 years old. At the time, he pretty much just laid on his back and other than some rudimentary attempts at crawling, he really didn't do much. By the time he left the primary school, he had a wheelchair, a walker, and he was walking all over the school and had begun to learn to communicate. This was all in great part due to his teacher Brenda Martin, his speech therapist Micki Mason, and his Physical Therapist Valerie Wondra, not to mention all the amazing para's who worked tirelessly with him (Diane Ellis, Terri Lander, Rita Snider, and so many more). 

Once out of the primary school, we had our ups and downs with school, mostly because from day one I was told that since David was non-verbal, I was his voice. I had to make sure his needs were always met and that his voice was heard, and I took this job very seriously. Because of this, I was not a favorite of every school administrator, nor every teacher or para that crossed his path. There were times when I would walk into a school and see a teacher or admin who would literally turn and walk the other way to avoid me. Through it all though, he once again came in contact with some amazing people including his long-time para Niki O'Daniel, Sandy Phillips, and Cindy Ramsey, just to name a few. 

It wasn't until David hit high school though, that the changes really began. He was originally blessed with a teacher named Mallory Ashworth. Mallory met David daily with joy and was constantly willing to go above and beyond to help David succeed, whether this meant getting extra training or going to a P.T. appointment with us. She was amazing and she will never know the gratitude I have for her care and love of David. Then, a year into high school,  there was a complete change over in David's teachers and para and boy did he hit the jackpot. He had Alisa Pittman as his teacher who refused to see David as anything other than amazing and capable and Tony Shrubshall as his para who has given him the ability to soar in both the classroom and in life. Oh, the places he has gone since that day. He has learned to be so much more independent, and self-sufficient and he is also getting pretty proficient at sign language. He also has other amazing staff working with him such as Carol, Micki, and our beloved friend and bus driver, Bob, just to name a few. Without all of these people working so hard to help him succeed, I simply don't know where we would be.

 

Let's also not forget all of you who read David's Facebook page and mine, as well as this blog, who pray for David, cheer David on in all of his accomplishments, helped us to save his home, and most importantly, those who see him as the amazing individual he has turned out to be. 

So, as I said, I have given David roots, but all of you have given him the wings to fly and become the man that no ceiling could ever hold in. 

Now, tomorrow, I will go and watch my youngest, the focus of my last 21 years, do something that I dare not even dream he could or would. Tomorrow, David Elam will graduate and suddenly, the woman who always remains stoic and unaffected (except in a crisis), is about to fall apart. I am overwhelmed looking back on the journey and reflecting on all who have been there along the way, both through the amazing and the not-so-amazing. I find myself unbelievably grateful and even a little terrified as both he and I will be starting a new chapter in our lives. 

Thank you all for your kindness, prayers, understanding at times, and your constant ability to let David and I know that we are not alone and that we not only have friends and family behind us but also a wonderful community of individuals who always seem to have our back and cheer us on regardless of the current crisis. Thank you just doesn't seem adequate....now does it? 

Fear not, there will be more. As I said, we will be moving into a new chapter, with new stories and insights and I will keep you posted both here and on Facebook. So until next time..........

HAPPY GRADUATION DAVID!

Summer Has Begun!

And so.....school is out and summer has begun. As I have previously talked about, this is the summer before Davids's senior year and we have plans. I have been watching both the news and the internet for free and fun things to do on the weekends and during the week, and so far, we have stayed very busy. 

Last week we went to see his physical therapist (PT) Valerie and she checked out his braces and did an eval to see where he was and what goals we needed to set and implement in the next six months. It was overall a very positive eval, as she had to widen the tops of his AFOs (orthotics) because......wait for it.....his calves have gained muscle!!!!!!! While his legs still aren't huge, they have definitely gained some muscle mass this year. 

Valerie was also impressed with his upper body strength. For a kid with cerebral palsy, he has amazing arm strength and a lot of that is due in great part to his teacher Mrs. Pittman and his para, Ms. Tony at school, who have made sure he does stretching and works out his muscles every chance he gets. Their hard work is paying off in spades. His upper body strength is making it so that he can do a lot of his own transfers, like from his bed to his wheelchair and his wheelchair to his stander. My back is very grateful. The funny thing is, in these transfers his arm strength is almost more important than his leg strength. 

He also showed off his attempts at walking with a Kay walker. David walked with a Kay walker until his spine surgery. Since then he has walked with a gait trainer walker, as his legs and hamstrings were not strong enough for the Kay walker. We have been working on strengthening his legs though, and for Valerie, he stood, turned around, and walked a few feet with the Kay walker. Immediately, that became one of our summer goals.....to get his legs strengthened and his hamstrings stretched to maybe get some Kay walker mobility back.

While talking to Valerie about what I needed to do to help him progress this summer, it occurred to me that I work out at Planet Fitness and PF has some phenomenal machines that might be just what the PT ordered to get him stronger, looser, and more mobile, so I ask Valerie what she thought. She agreed that some of the gym machines might help him a lot. So I wasted no time in talking to them at PF and asking them if I could bring him up there a couple of times a week to workout. They couldn't have been nicer. I told the GM that I wanted to bring him at a time when there weren't a lot of people there to distract him and that he wouldn't distract. She asked why and I said that David can get excited and loud and her exact words were, "So?! That's not an issue." If I didn't already love PF for everything they offer, the fact that she said that, made me almost tear up. You have no idea what that level of acceptance means to a mom of a special needs child. So either this week or next week, David will be my afternoon guest at PF!

As most of you already know, David is non-verbal. Over his lifetime, he has been able to say a very few words or sounds that sound like words, but he has always been able to get his point across when he needed or wanted something. Years ago, he learned a few signs (in sign language), such as more, please, thank you, want, and yes, and they have all stuck with him. It was enough to help him communicate, but that is pretty much where it ended. Truthfully, some sign language is just not feasible for David because of his cerebral palsy. Then about 6-8 weeks ago, I noticed that David was making movements with his hands that were very deliberate and repetitive. Before I even had a chance to ask, Ms. Tony told me that she was teaching him more words in sign language and that his whole attitude and demeanor were changing. Why? Because he now had a way to independently communicate. This makes him a whole lot less frustrated when he wants us to know something. 

Now he has had communication boards and a communication system on his iPad in the past, but he always fought the boards and the system. He would learn what he was forced to learn, but he had no real desire to initiate communication with them. Ms. Tony though, did what she does best, and made it a fun game for him, and viola, he is starting to independently sign. She is so dedicated to this process, that she even came to the house on her own time to show me the signs and teach me, so that over the summer, David wouldn't lose any ground. With her assistance, David was so excited to show me what he knew and I was so excited to see that this was something that not only gave him more independence but that he also really enjoyed. So now daily, he and I are working on the new signs and our newfound communication. Of course his niece Willow is picking it up faster than any of us, so I have no doubt that she will be a great asset in Davids's learning, further on down the line. 

So far, David's days are full of daily at-home PT, stretches, playing on his iPad, learning new signs, playing outside with his niece and nephew, and just enjoying the easy-going yet busy days of summer. As the weather continues to warm, there will also be pool time, walks, and outings to varied places. 

In case you can't tell, I am so grateful to all of those in David's life who see his potential and continue to push him to be his best self and live his best life. I am also grateful to the GM at PF, who seems to understand that his need to be able to work out is great, but there may be a bit of a learning curve at first on keeping his excitement to a minimum and keeping him focused on the task at hand. Having people like this in our lives is simply invaluable. 

Well, the summer break continues forward. Hoping by the time school starts again, we will be able to look back and call this our best summer so far. Most of all, I love that having a special summer before his senior year, is such a mainstream thing to do and that we are both enjoying every second of it. 

Until next time, may you stay cool, have fun and live your best life each and every day. 

 

Starting the Summer with Steampunk

Well, I told you that we were going to try to do this summer and the next school year up right. So we started it all out, by going to the Old Cowtown Museum a week ago this last Sunday and attending the Steampunk Festival they had. 

David has actually been to Old Cowtown before and considering everything, it really isn't too bad getting him and his wheelchair around when we are there. Of course, there are buildings he can't go in because, in the late 1800s and early 1900s, nothing was wheelchair accessible, but all in all there is still plenty for him to see and be a part of.  

For those of you wondering what the Old Cowtown Museum is, click here.  It is a Museum in Wichita, KS that is set up as Wichita likely looked in the early days. Many of the buildings there are actual buildings from the time period that over the years have been moved there from their original locations. It is a fun place to go if you like history and I always have. 

They are open most of the year but summer is when they do their biggest business. Every year girl scout troops dress up in outfits reminiscent of Little House on the Prairie and give tours through all the buildings and there are special events all through the season. This last weekend was, of course, the Steampunk Festival, and I talked David's brothers, Wesley's girlfriend Sarah, and the grandkids into joining David and me on our trip to the museum. 

The weather was perfectly warm and overcast so as not to get too hot. Nothing out there except the Information Building and the Saloon are air-conditioned and David doesn't handle extreme heat or cold very well. Neither do I for that matter. 

David seemed to enjoy seeing all the people in their steampunk outfits. I think what I like most about steampunk is how much imagination can go into some of the costumes. I especially love the hats. There were kids and adults dressed up and not all of them were the actors. Some were just people who showed up to the event dressed in their steampunk finest because they simply LOVE steampunk. 

In many of the buildings, there were people dressed in a cross between steampunk and Laura Ingalls Wilder and they told us the history of the buildings or some interesting fact about the time period they were representing. This trip was especially fun because David's niece Willow and his nephew Kaiden were with us. While Kaiden is still a little young to really understand how cool an old printing press is, Willow is just at the right age to start appreciating its historical significance. 

On the main street, they put on a steampunk version of an old Dime Novel shootout. The guns were real but full of blanks and once again, the costumes were sooooo good. David loved the guns going off and would first look surprised and then laugh his belly laugh until he snorted. Since it was a shootout, this happened more than once. David was pretty entertaining for all of those around us.  

David's brother Zach, got to sword fight with a pool noodle wrapped in electrical tape, which seemed a little more on the steampunk side of things and a little less on the old west. It was fun to watch nonetheless and David also found this pretty entertaining too. Truth be told, I was fairly amused myself. 

Wes, Zach, and Willow all also got to try their hand at hatchet throwing. We learned that all of them could hit the target but not actually make it stick. This is perhaps a skill we need to work on at home.....or not. 

So at the end of the day, we got to see everything from kilts to corsets and feathered hats to goggles. There were high-wheeled vintage bikes and an old-time vintage motorbike with a sidecar. They had a live band dressed out in full steampunk garb playing everything from The Animals to the Drop Kick Murphy's. All in all, it was pretty awesome and everyone, especially David had a good time. He loves people and music and he seemed to really dig the clothes as much as I did. Imagine that!

I do wish that I had taken more pictures, but between finagling, the wheelchair over wooden planked sidewalks, and helping to keep up with a three-year-old, picture-taking moments were especially few, but the memories were made and that is all that matters. 

By day's end, David was exhausted as were the rest of us. He thoroughly enjoyed the experience though and especially enjoyed the whole family being there. It was a great start to the summer. I hope that there are more adventures just like this one as the summer officially begins. Who knows, maybe we can find another Steampunk event along the way. 

Until next time, here's hoping you stay cool, stay dry (especially if you are in Kansas), and that you find as many adventures as we hope to this summer.  

 

Get Ready for...The Incredible Mr. David 2.0

Next week will be the end of what by all intents and purposes is David's junior year. That means one more year and he graduates. It is almost more than I can even imagine. It is such a blessing and yes, a miracle since almost 21 years ago, there was great doubt that he would even make it out of the NICU. To have him graduating high school is just the biggest gift. 

At this point, I can't even think about what comes after high school for him, and if I have learned nothing else in the last couple of years, I've learned that I don't have to worry about what lies beyond high school right now. All I have to concern myself with is this moment and in this moment, I just feel such a sense of gratefulness. 

I have had so many people tell me that David would not be where he is without me. Well, maybe there is some truth in that, but not how you might think. The reality is that David came without an instruction manual, therefore, for the last 20 years, I have flown by the seat of my pants. Sometimes I had some idea of what I was doing, but much of the time, I was pretty clueless and was basically praying my way through it all. It has been a real roller coaster ride since day one, but without David being who he is as a person and a human being, we would never have made it.  

Now as I look ahead to the summer that is about to be on us, I find myself wanting to cram as many adventures and experiences into the next couple of months as I can. It is that whole, "My baby is about to be a senior," thing. Even though he is twenty, he still feels like my little boy and something mentally in me says that once he graduates, he will then be a man. The dynamic will then change. 

The other day I was thinking about my boy and how I used to pray every day that David would be able to walk on his own and talk and be able to get the most out of life that he could. It dawned on me though, that walking and talking are really not all that important in the big scheme of things. What is important is that David is able to live his best life, and truly I think he is, and he does, and honestly, what more as a mother, could I ask for?

If you are an Incredible Mr. David blog reader, now might be the time to get those glasses shined up and ready for reading this summer and next year, because I hope to be able to document his summer adventures and his last year of school right here.  I know with his wonderful teacher Mrs. P and his amazing para Ms. T, they are going to ensure that his senior year is the best one ever. I also hope for him not only to wheel himself across the stage to get his diploma but also for him to be able to go to prom. I mean...why not? 

I know that being the mom of a special needs child may be looks difficult from the outside looking in and a lot of people think to themselves, "I could never do that," but the truth is, being David's mom has been one of the greatest honors of my life. He has brought me so much joy and happiness and he has taught me so much about life and love, that I never knew existed or was possible. Truthfully, if I have any redeeming qualities as a parent or a human being, most of them are because of David and what he has brought to my life and the lives of those he touches. 

So be prepared folks. You will likely be seeing a whole lot more about David in the coming year, as a lot of big stuff and milestones will be happening,  and I hope you are gentle with me for all the posts and blogs you will likely be inundated with. It is just, that when you bring a child into this world that has a 5% chance of making it and the first three months of his life, his condition is beyond critical, and his prognosis is poor, then you have to understand that David coming so far is a bonafide miracle and it is something that deserves celebrating....and celebrate we will! 

Until next time......I hope your last days of school are fun, your first days of summer are amazing, and that you are ready for The Incredible Mr. David 2.0!

 

Ms. T, Sign Language, and Absolute Quiet

I have learned many things over the years as the mother of David. I have learned that what I once considered a "normal" and basically uneventful milestone for some kids, is a reason for celebration, possibly a party, and definitely gratitude for others. I have learned that being your child's voice, neither makes you liked nor listened to at times, by people that should, but it can make you feared if you take the job seriously. I have also learned that sometimes words are overrated and that you can become fluent in your child's way of conversing, even if it's not through vocalization. I think though, the most important thing I have learned is that no matter how old he gets, there are still literally thousands of things I still have yet to learn and things that even at this point, I have never even thought about. 

This was brought home to me not too long ago when I was having a conversation with his school para, Ms. T. Now this para is a one in a million. She has only been with David for about two years, but she is very intuned to him and can second guess what his needs are before he even knows what his needs are. She and his teacher Ms. P, are very determined that in the year David has left in school, that he is going to learn as much as he can and take away from school all the skills and life lessons he can in order for him to have the best future and the best possible life after high school. Now you may understand why I say we have scored when it comes to paras! 

One day, Ms. T. was telling me about all the new sign language that David is learning and that she needs to show me so that David and I can converse more easily. Through her ability to get the craziest things from him, and his brain being willing to receive new information from her, together they have hit a sweet spot and he is learning so much. Through sign language or his version of sign language, since with his cerebral palsy he has some issue with some of the signs, David is a lot less frustrated because he is being understood and he is feeling much more independent being able to instigate a conversation, need or want. It is like opening a door for him that has been shut for the last 20 years. It's really rather miraculous if you think about it. 

While we were talking about sign language, Ms. T. went on to talk about how she was also teaching him cues to be quiet at certain times. David? Quiet? So a little back information, David has never been a particularly quiet child. I think it kind of goes with his disabilities and also that because he is non-verbal, his vocalization is important to him. He has always been loud and excited when he sees people, when there is music playing or when he is in a new place. He also knows how to read a room and the acoustics in a room. If he knows he is in a place where sound will carry, such as a gym or say.....a church...during Mass, he is going to test those acoustics to the fullest. He has also always been pretty vocal on the school bus, but I had noticed of late, that I couldn't hear him on the bus when it was coming down the street like I used to be able to. So David...learning to be quiet. Cool!

According to Ms. T, she is teaching him to be absolutely quiet at certain times and in certain places (like the school bus) by using cues from her. Bonus.....he is listening and paying attention. He is actually being quiet. Then she told me why she was teaching him this, and I couldn't decide whether my heart would burst with gratitude, or if I was just in shock. 

Ms. T. is teaching David to be quiet on cue, in case there is ever a school shooter. 

If that last sentence stuns you, then leaves you silent, and then gives you a total sense of, yes.....that is hugely important, then you will know how I felt when she said it. It is something so important in the world we live in, but something that I am not sure I had ever really thought about. It was one of those things I know I should have thought about, but sometimes I think my brain will simply not allow those kinds of thoughts in. It was definitely a lesson in preventative measures and David's safety. 

I won't lie, I have had a couple of horrific nightmares since Ms. T. and I had that conversation, but in my waking hours, when common sense overrides the nonsensical aura's left behind from the nightmares, I realize that Ms. T. is giving David a dose of self-preservation, a little bit of independence and she is also opening him up to many more opportunities in the world where quiet is necessary.  Did I mention, that he is actually listening and paying attention to Ms. T.'s instructions and cues and he is being....quiet?!

Sometimes in this life, we just click with people, and because of the bond we form, we can achieve things we never knew were possible or that we even wanted to. That seems to be the case with Ms. T. and David. Working with David, she seems to connect with him in a way that he both understands and he is willing to listen to. Because of this, she is in effect, changing both David's world and his life.....and she is also teaching his mother a few lessons along the way. 

To say that I am grateful to Ms. T and his wonderful teacher Ms. P, would be an understatement. Ladies.....if you happen to read this....thank you from both David and I.

Until next time.....may you challenge yourself, respect yourself and if you have a great teacher and/or para.....give them a really big hug. 

A Letter

 

Before David was born, I knew almost nothing about the world of special needs. Yes, I was vaguely aware of cerebral palsy and children who had learning disabilities, but I am sad to say because they didn't affect me, I didn't really think much about them. Also, back at that time and before, it seems that general education schools didn't have much in the way of special education so the gen ed schools didn't have a lot of more severely disabled kids. Because of this, gen ed kids were not exposed to differently-abled kids when I was growing up like they are now. So when my David was born and terms like "grade 4 brain bleed" were thrown around with worst-case scenario's being cerebral palsy or even death, Tim and I were in shock. We were so far out of our element, and who could blame us?

In a matter of 24 hours, we had gone from me being six months pregnant and us moving into a new house, to me, going into premature labor because of a placenta previa, me having an emergency c-section, both David and I almost dying and David ending up in the NICU being categorized as "beyond critical." In such a short time, we had been thrust into a world of medical terminology, monitors, tubes, doctors, and nurses quietly moving from tiny infant to tiny infant, fighting to keep each one alive. 

We were now among other parents with shell-shocked looks on their faces or simple resignation that their lives would no longer be the same. We were about to get a crash course in medical terminology, medical technology, long days sitting by a NICU crib, and long nights of no sleep. We were about to learn what it was like to be on a real-life roller coaster. 

Looking back, we knew nothing about this new world we had become a part of, and what I have learned every day since is that you can never know it all.... or even enough when you bring a special needs child into this world. You will never look at anything the same way again and even having had children before David, raising David was a completely different experience. 

So having spent the last twenty years taking care of and raising David, making mistakes, researching, and learning, I was thinking the other day, how much I still don't know and how I wish that there had been someone there who could have coached me, guided me, and on those really bad days, told me that we would get through it, find our new normal and be just fine. It occurred to me then, that maybe I could be that person for someone else. So what follows is a letter to special needs parents, that I wish someone had written for me. 

Dear Parents of that beautiful child that you just brought into this world, 

I know you are scared. You have probably already heard words and terms that you don't completely understand and that quite frankly scared you to death as you are trying to process what is going on with your new little baby. Just know, that whatever happens from this point on.....it will be okay.

I also know that you are going to see your little newborn in the NICU for the first time and you have no idea what to expect. I know it is pretty frightening. All you need to think about though, is that your baby is in a very specialized unit, staffed by extremely educated and specialized doctors and nurses who are dedicated to giving your baby the best outcome possible. Don't be afraid to ask questions and to communicate your needs as a parent to them. They will listen, they will hear you and they will be the greatest gift you have right now. So as you prepare to walk in and see your baby, take a deep breath and remember you are his/her parent and they need your calm, your patience, and most of all your love to get healthy and to go home and start their life with you. 

In the next few days, weeks, or maybe even months, you will become a monitor watcher and you will learn what every line, every tube, and every bell and whistle mean. You will learn to read faces and you will study the face of every doctor and nurse that walks in to tend to your baby. You will ask many questions and over time, you will learn just what questions are important to ask. And if they give you an answer like we can't tell you definitely to what degree your child will be affected by cerebral palsy (as an example), then know they are not hiding anything from you. Sometimes these things are dependent on so many factors as time progresses and they simply can't give you a definite answer. 

Your days in the NICU will be filled with ups and downs with your child's health. You will have a barrage of doctors and nurses in and out, with specialties you might not even know exist. And if you aren't the praying type, chances are you may become the praying type as you look for answers that even the doctors can't give. 

Your days and nights will be spent in that chair, by that crib and you will doze with one eye and one ear open, waking at even the smallest change in your child. On the bad days, you will pray for the most unusual things like peeing and pooping and on the good days, you will rejoice over the most normally mundane things like a smile or a finger grip and you will always be on high alert waiting for the other shoe to drop, until the moment when you walk out of the NICU with your baby in your arms.

Depending on how long your child is in the NICU, you will likely get dependent on the NICU. Even if you spend every waking hour by your child's side while they are there, you still feel secure knowing that if anything happens, you have a team of staff that will be there in seconds and do whatever is necessary for your child. When the time comes however to take your baby home, you will feel abject fear as you walk out of that NICU. There will be a realization that you are now, completely responsible for your special child and you will likely break down, fearing that without a medical degree, you might actually break him or her. Sound silly and ridiculous? It's not and you won't. 

Once your child is home, depending on the severity of his/her needs, don't be afraid to ask for help from family, friends, and medical professionals if necessary. There are no owner manuals for this beautiful child, but believe it or not, you will fall into a routine fairly quickly and in many cases, you will know instinctively what your child needs from you. 

To better help your child, your first course of business is to find your county or state's disabilities office. They can direct you to resources and help, and much of it should be covered by insurance. There are certain services that your child will be put on waiting lists for and other services that your child will likely start immediately. Certain services like physical therapy can't be started too early. These are the services that will help your child hit milestones and help them to have their best life in the coming years. Oh, and your child will not be dismissed from the hospital without being covered by at least state insurance. These special little ones will need a lot in their lifetime and this state insurance will cover a great deal of it. The disabilities office should assign you an agency and that agency should assign your child an advocate. That advocate will be the person who helps you navigate the disabilities system and make sure that as your child grows and develops that they are always receiving the best services for them and whatever adaptive equipment they need. The advocate can also help you to understand state insurance and what is and isn't covered for your child. 

As your child grows, you will become more comfortable being the parent to this special child. You will also become your child's voice. No one will know your child better than you do. You will know when they are in pain, scared, sick, happy, or just having a bad day. So you are going to be your child's first line of defense out in the world. If your child has to go to the doctor or ER, make sure that your voice for your child is heard. If something in your gut says they are not listening to your or that they are doing something that is not beneficial to your child, MAKE THEM LISTEN! The same goes for daycares and schools. Your voice has to be their voice. 

In the coming years, the moment you get comfortable with life and feel like you have conquered the disabilities codes and maizes, I promise you, things will change and you will have to start conquering all over again. You will learn to take notes about everything and you will keep a list of numbers that give you access to doctors, insurance, service providers, and even lawyers. You will know who the top person is at every agency you speak with and you will demand that you only speak to them. Even with that though, prepare yourself that you will end up spending literal hours on the phone and on hold. 

In the course of your child's life, agency's will change, advocates will change, services will change, service providers will change, diagnoses will change, doctors will change, schools will change, teachers will change, insurance will change, and medications will change....and you will likely at one time or another fight and argue with all of them about all of it. The one thing, however, that will remain the same throughout it all, will be you. You will be the driving force behind everything your child does, every milestone they achieve and every glorious battle won. 

As you sit there holding your beautiful baby and trying to imagine what the future holds, I would like to say that it will be a piece of cake, but I can't lie to you. The truth is there will be sleepless nights, worry, fear and frustration. You will spend huge amounts of time on the phone trying to seek out information like it is your job. You will fight more battles than you ever dreamed possible and if you were shy and quiet prior to having this child, that will soon be a thing of the past. 

You will have little time for yourself and you will have no time for people that have no understanding of your life as it is now. You will find yourself educating others on your child's disabilities and you will introduce your child to other kids so they can understand that your child is just another kid with a really cool chair. 

You will spend your days driving to doctor and therapy appointments. You will be a caretaker and nurse without the degree. You will spend your time trying to find the balance of protecting your special child and allowing him/her to have as much independence as possible. You will vett people like crazy as you will not let just anyone in your child's life, but the people that pass the test will become like family. You will also learn patience, selflessness, a special kind of joy, and a love you never knew you were capable of. 

Milestones won't just be milestones, they will be causes for big celebrations and you will find miracles all around you, all the time. In fact, I promise you, that in 20 years, you will look back at all of this and wonder where the time went. You will have become someone you don't even recognize as you will have grown from being a parent to a warrior and you will be so grateful for every trial, every frustration, every milestone, and every lesson you learned along the way. 

So yeah, I know you are scared, but you've got this and I know that baby, your baby, is so lucky to have you. You are going to change their life and give them so much, and bonus, they are going to change your life and give you so much too. It's going to be the wildest ride you have ever been on, but at the end of the day, you are going to be grateful for every second of it and you are going to be so in love with that person who was once so tiny and fragile, who you have helped grow into the best them they can be.

Sincerely, 

A Special Parent, Just Like You

Until next time....may your hold time be short, your instructions be in English and may you find a miracle you didn't know you were looking for.

The First Twenty Years

I have had people ask me if David graduates this year. He does not. He has another year, as he can go to school until he is 21. This made me realize though, that it has been a looooooong time since last I blogged here. I guess you can think about it this way.....no news is good news.....or at least......not bad news. 

If my eyes didn't deceive me, it was 2019 when last I posted here. A lot and yet really nothing has happened since then. David has had a couple of hospital stays, one was for a 105-degree fever. Yeah, that was fun....not! And scary as heck. Then there was a hospital stay for a bladder blockage (possibly a kidney stone), but it all took care of itself. For the most part, though, his health has remained good and he was the only kid in the school that was allowed to go all day, this entire year, as his room is pretty much quarantined in the best of times and his socialization was limited to about three people. He has loved every second of it, as during the lockdown last year for the last nine weeks, he did not have a good time being at home all that time. Mom just isn't as thrilling as she would like to think she is and I got a lot of him pushing me away and pointing towards the door. He missed his teacher, his para, and the other kids. Hopefully next school year, he can have a lot more peer socialization. 

Yes, David is growing up and he is 20 right now. Some days I can't believe it. He is no longer my little boy. He is now a man, and if I ever forget that, all I have to do is look at the mustache and goatee that his face just naturally grows. I think he has more facial hair than any of his brothers....and he likes it. Still though, when I see him laughing at Spongebob or giving me his "cute face", it lets me know that my special little boy is still in there. He just has facial hair now.

David has been very blessed school-wise, as he has ended up with a very kind and loving teacher and an amazing para. I think the school finally realized that these special kids need to have the same para as much as possible for so many reasons. His para Miss Tony is a keeper and when his school years are through, I don't know which one is going to be more lost, David or Miss Tony. She gets so much out of David and he adores her. 

With David growing up and transitioning from a child to an adult, this process has not been without struggles. Everything we knew before he turned 19, changed directly after. He had to change where he gets extended services and who his advocate is, I had to become his legal conservator (not just his mom), he has had to go on medicare for insurance (which was a nightmare to figure out), and now everything he does is in the adult world. No longer is he considered a child. It is a mixed blessing as I am beyond grateful that the tiny little guy that they didn't think would live to make it out of the NICU 20 years ago, is still here, going strong and proving to the world that for him there are no ceilings. On the other hand though, sometimes I look at pictures of him when he was little and I miss my baby. I guess it is just a normal mom thing. 

David still gets his botox injections for his muscles every three months and he does fairly well with his mobility. Unfortunately, when he had the spinal surgery to straighten his spine, he did lose some flexibility due to the rod in his back and he took a few steps back in his ability to walk with his walker. He has done well though, with trying to catch up. The bottom line unfortunately is, there are just some things he used to do, that he will never be able to do again. We deal with it and go on. 

School is almost out and soon we will be in summer. This year, David has put on more weight and gained some strength. I decided to change up his diet and it has worked very well for him. It is my hope that with this new weight gain and strength, that he will be able to enjoy the pool more this year. The last couple of years, because of his low weight, if it wasn't really hot outside, if he got in the pool, it would drop his blood pressure and give him an almost hypothermic reaction. Then it would take a lot to get his body temperature back up. Fingers crossed that this year we don't have this issue. 

It is so hard to believe, that this year David will be 21 and that next school year he will be graduating from high school. He has been in this school district since he was 3 years old. To not have him there after next year will be so surreal. Even more surreal though is that he will be a high school graduate. I remember when he was about 4 years old, and I was at an IEP for David. His teachers and extended staff were all present and something was brought up about when he would be graduating. I remember his speech teacher Mickey Mason, tearing up and saying, "I can't wait to see him go across that stage. I will be the one cheering the loudest." I have no doubt that she will be too. 

David has been through a great deal in his first 20 years. He started out beyond critical, survived, lost his dad, lost his grandma, suffered through years of seizures, has had numerous hospital stays, lots of surgeries, has been septic on a couple of occasions and nearly died, has gone to school, made friends, and taught everyone who knows him, unconditional love, kindness, giving and the knowledge that not all disabilities are equal and that disabilities are not roadblocks in life, but merely speed bumps. 

It has been an exciting 20 years and I can't wait to see what the next 20 holds for him. Who knows what medical breakthroughs there will be and just how many more lives he will touch? What I do know though, is that David has never quit fighting a day in his life and whatever the future holds, he will be ready and in his own small way, he is gonna change the world. Heck....he already has. 

Until next time, take care, be kind and never give up. If David can do it....so can you!

Special Needs Parenting....the Stories

I know I have talked about special needs parenting before. It is something I know well, and I was thinking today about some of the unusual and sometimes unkind situations that my family and I have been put in since becoming a special needs family.

Whether people realize it or not, there is much judgement out there of both the special needs child and also the parent. There is also a lot of misunderstanding about the child and how actions or inaction can cause life altering or even life endangering situations. There is also a lot of judgment and a huge lack of empathy when it comes to situations that make people unhappy or uncomfortable. Here are just a few of our stories.

When David was born, he was premature and I was told by every doctor, nurse and therapist that cared for David that his birth and his consequential health issues from his birth, were in no way my fault. I had had very good prenatal care, I never drank or smoked and I took care of myself during my pregnancy, some how though, the placenta decided to detach from the uterine wall which put both my son and I in danger of death. The doctors had no choice and we had no choice as parents, but to bring my son into this world 13 weeks early.

As a parent, you can't help but feel responsible as you see a child barely 12 inches long and 2 pounds fighting for his life. We couldn't hold him, all we could do was watch and pray and yes....I wondered if I had done even one thing differently, would that have changed the outcome? Looking back now and knowing what I know now.....no, it would not have changed a thing. It just was what it was. At the time though, it was hard not to question and then within days he developed Candida of the blood and we almost lost him. Candida is a yeast infections that can make a full grown healthy person very sick, but in a medically beyond fragile infant, it is often deadly.

Again, I found myself racked with guilt as I worried that I might have passed the infection from my body to his. Had I eaten the wrong foods or done something that had caused yeast to build up in my body and thus given this horrible illness to him? I later found that the Candida was an unfortunate side effect of David's umbilical line. They had kept his umbilical line in longer than normal simply because they couldn't find another IV site that wouldn't blow.

Those first five months were harrowing.....the first three especially, but it didn't stop people from asking Tim and I, if I had done something to cause all of this during my pregnancy. It felt like pure and simple judgment and would always take me back to the "what ifs."

The judgment continued for us, when after David's time in the NICU, he was released on no medication, no oxygen and no feeding tube. He was given a clean bill of health and the doctors told us that his chronic issues with physical and mental development would remain to be seen. They  had a good idea that he would have CP, but at this stage, they had no idea how severe, so he went home like any other normal baby. Tim had taken a great deal of leave during David's hospital stay and work had cut him a lot of slack, but David was home, looking quite healthy and normal and the questions began with sly words and nasty comments made here and there about David not being as sick as we "claimed." After everything we had been through, that was tough.

After Tim died, the judgment was even more difficult and at times, peoples behaviors towards David and I was just down right vicious. I was now a single parent and that alone is a scary place with a special needs kid and people who knew me, knew that my kids were my life. I was also told from the get go, when David started school at 3 years of age, that I was his advocate and that I must stand up for him at all costs. When at 6, David had a school physical therapist who literally wrote David off and refused to work with him, his physical abilities started going down hill. After discussing this with his doctor, I then confronted the PT in his end of school year IEP. I was in no way hateful, but I was direct (as the school had taught me to be) and I  thought it was all taken care of, until one day coming home from David's  extended school year summer class, I was met with CPS. I had been called in as unfit because: David needed a haircut, he was still wearing a diaper and he had a sunburn. 

I was astounded that someone would call me in for this crap and scared too because I was a single mom with no backup. He indeed did need a haircut, but he always needed a haircut. His hair was thick and bushy, but it was always clean and combed and he hated haircuts. Yes, of course he was wearing a diaper. Apparently the "caller' did not tell CPS that he had CP and was incontinent and yes, he did have a sunburn. It wasn't bad, but it was the beginning of summer and he had been out in the pool. I had been putting Aloe on it and there was no blistering or peeling, just a little redness. Luckily David was there and she could see for herself how he looked. I explained that he had CP and I invited her in the house. She refused my offer and she said that it was obvious this was a harassment issue and nothing more. Of course she couldn't tell me who called but she said that she and CPS would not be bothering me again. I told no one because I was shook and embarrassed that someone felt that I wasn't taking good enough care of my child. The special needs mom guilt was really working overtime.  A few days later I got a call from an unidentified caller who simply said that the school PT was the one who had turned me in. She was angry that I had called her out in front of everyone at the IEP meeting and this was her payback. Unbelievable and I knew it had to be true because I had told no one about the visit.

Sadly, that was not the only time this happened. I was working in a place where I really liked the job, but the boss was an active alcoholic and ran an administrative team with a high school clique mentality. Let me just add in here, that that place was suppose to work for the benefit of kids. One day, I respectfully stood up to the boss and the team. I did it with no ulterior motive other than just doing my job. After that, one of my kids got sick and had to go to Children's Mercy in KC. We were there two weeks and both my job and both kids schools knew where we were and why we were there. My job definitely knew because I kept in daily contact. Once back home, I was once again met with a CPS worker at my front door asking me where my kids had been and why they hadn't been in school. Again....I was caught off guard. This time I insisted they come into my house, check  everything out and then I gave them the numbers of the kids schools and my job and I made sure they called the schools to verify what I told them. I also gave them the number of my sons doctor and the number to Children's Mercy to verify that too. Finally, I gave them full permission to go to both kids schools and check on their welfare. Once again, the CPS worker seemed embarrassed and called it a "harassment" call and said that all was well and the case would be dropped. The next day I went to work and was talking to a co-worker who went ashen when I told her about the visit. She then told me that it was the boss and her minions that had turned me in. I quit that day.

People either don't realize or simply don't care the damage that they could do by playing games with the system and with families like this. First of all, these types of unwarranted calls are why the system is so jammed up and the CPS workers can't focus on the REAL cases. This is why so many kids fall through the cracks. Second, David is non-verbal and if one of these case workers would have decided to investigate or take David from my home, he would have been a prime target for abuse. It would also have terrified him as he had only ever know his home and his family. These antics could have put my child in danger and destroyed my family and yet all these people could do is somehow think this was how they handle a situation when someone doesn't agree with them.

Special needs parenting is tough on the easiest day. We are constantly fighting with insurance, doctors, schools and service agencies. We are running to doctors, therapies and evaluations. We are caregivers, teachers and advocates for our children who often times will be under our roof and in our care for the rest of our lives. We spend time in hospitals, doctors offices and schools all for our special needs child. We go to bed tired and we wake up tired, so when others who have no understanding of our situation or our lives judge us, talk about us or cause us extra issues and put our families in jeopardy, it all gets to be a bit much. We become fighters and we become a force to be reckoned with when it comes to our child and his/her needs and because of this, sometimes when you mess with us, you get an ugly outcome.

I could go on and on with story after story, but if you take anything away from this, please let it be that we as special needs parents are human. Don't judge us because you don't understand our lives and don't complicate our lives unnecessarily because you may not like how we do or say something. Just love us if you can and if you can't.....then keep on walking. We will understand.

Until next time........

Having and Helping a Child with Cerebral Palsy

One of the things I have been asked a lot over the years is, since I have a child with cerebral palsy, what I think is the most important thing a parent can do for the child's care so that they can thrive as much as possible. It's a great question and here are my thoughts.

First of all, let me say that CP is not a one size fits all illness. It effects different kids in different ways. Some it effects their upper extremities more, some their lower and some are equally effected all over. It weakens the muscles and either causes no tone or too much tone. Because of this, my recommendation to anyone who asks is, from the beginning get your child the best orthopedic specialist, the best neurologist and the best physical therapist you can find from day one. In some more remote areas, finding these top notch specialist may mean traveling and if that is the case, then I strongly suggest looking into a Shriner's Hospitals. Shriner's Hospitals are for kids and for specialty issues such as CP and the doctors at these hospitals are the best of the best. Shriner's also works with insurance if you have it, but if you don't, they foot the bill whether it is for therapy, examinations, surgeries, orthotics or anything that your child might need to give him/her the best outcome possible.

Let me stress to you that the sooner you get your CP child into a good ortho doc, the better. Immediately, even in infancy, they can start checking your child's tone, bones and movements and keep track of them as they progress through therapy, so if they find surgery to be necessary, they are on top of it. The second important thing....get in with a good PT as soon as possible. Even as a tiny baby, a physical therapist can start working with your child and help them to build muscle and work on their tone. Most PT's can now also cast children for orthotics and help provide them with any assistive equipment they need right from the start. Let's also not forget the neurologists part in all of this. Most CP kids do end up with some neurological deficits and like David, they have secondary issues to their CP, like Hydrocephalus and seizures. These require close follow ups with a neurologists. On down the line, the neurologists can also help with muscle issues too, such as Botox injections which help with tone and movement.

I can't emphasize  enough how important getting your CP child followed by these docs and working with a PT are. These will be key to how well your child progresses as they grow and how much mobility they have.

As your child goes to school, if it is a mainstream public school, you will find that most offer minimal therapies such as PT, OT(occupational therapy) and Speech as well as special education classes geared towards kids that are not in the mainstream. My suggestion here is that you seek therapies outside of the school district. Ideally, you can get a school PT that will work well with an outside PT, but seldom does this happen. One of the problems is that in a school setting, your child only gets about 15-20 minutes of PT every week to two weeks at school. This is not enough for a child that has severe issues and needs to be seen much more than this. If the school PT works with the outside PT, the outside PT usually sets up the therapy plan and the school PT makes sure that it is followed at the school level. In David's case, this didn't happen and we finally just went to outside PT. It has been a much better situation for him and he has become much more mobile since we have gone outside.

Another thing I feel that is so important is surgeries. I know that it is terrifying as a parent to think of your little one having surgery, especially if it is a long one with a long recovery period. Let me just say here though, that as scary as the knee and hip surgeries can be, the earlier they are done, the better chance your child has at moving around and even walking. We waited until David was 12 and that was almost too late. We didn't have a great ortho doc at the time and he didn't believe in surgery on kids unless it was a last resort. We finally found our way to Shriner's Hospital in St. Louis and from that day, David's life changed. His mobility would likely have been so much greater had he had surgery at 4 or 5 instead of at 12, however I am beyond grateful for the mobility that he does have.

Finally, let me say that any doctor or therapist you choose, should be a good fit for both your child and you. Do your homework and ask around. Other CP mom's in your area are a great resource for these kinds of things. If for any reason your child doesn't work well with a PT or you don't feel that your child is progressing well, it is not only your choice to change providers but also your duty to your child. The same goes for docs. If you or your child aren't comfortable with a doc or you don't feel like you are getting his or her best efforts with your child, then change. These docs and therapists are going to be with your child for a long time to come and you want the relationship to be one of confidence and trust.

Cerebral Palsy, though chronic, can be improved on greatly with the right therapies and the right medical professionals guiding your child's treatment. Every day new therapies, new medical advances and new possibilities are changing the lives of CP kids and their families all over the country.

When starting out as a CP parent, don't be afraid. Remember that from this day forward, you are your child's greatest resource and his or her greatest advocate. Never be afraid to question or change a doctor or therapist and when you find good ones.....listen, learn and soak up every bit of knowledge you can. This will give your CP kid the best chance for the greatest life possible. And that folks is my advice to you.

Until next time.......

Weak of Character, Big of Mouth....Don't Degrade My Son and Special Needs

This blog today is kind of difficult to write. It is difficult because it has to do with a subject that is neither happy, positive nor upbeat. Today's blog is about negativity towards the special needs population.

To begin with, in a time when people claim to be "anti-bullying", kind and loving, all you have to do is open up any form of social media and know that what people claim and how they act are often times two very distinctly different things. Sadly, in this day and age, we are so submerged in the muck of negativity, we are growing immune to it and forgetting that if we don't stand up and say something, we are just as much a part of the problem as those spouting the ignorance are. One of my favorite quotes is: "The only thing necessary for the triumph of evil is for good men to do nothing." Today, this quote could not have more meaning.

Now please don't get me wrong. I am not one of those who gets on social media and starts getting offended at every post I see. Honestly, I am the queen of scroll and ignore. Sometimes it is difficult but most of the time, I see ignorant, attention seeking trolls (not an insult but a term used for someone who gets on the internet and tries to be as obnoxious and insulting to anyone and everyone as possible) and I am so unimpressed, I wouldn't give their posts a second thought, let alone comment on it. Yesterday though, I was truly offended and I spoke up. Since my comments were met with disdain and personal insults, I am sure the attention seeking, internet troll in this guy far outweighed any true humanity he had.

So the story goes, a town just down the road has a Facebook page called the Complainers Club. It is basically a no holds barred page where no one is supposed to be banned and anything (yes absolutely anything) can be posted. I joined the page a while back because it is interesting to see how far people will actually go with that much leeway. I have been surprised though, there has been some fun banter, some hilarious posts and yes, some inappropriate and tasteless meme's, but for the most part, it has all been in good fun. Of course I am not on the page much so there could be a lot more that I don't see.

Last night I was scrolling and suddenly I saw a meme directed at special needs. The picture was not funny and in my humble opinion, the meme itself was degrading to any special needs child. How could someone see this as funny? How was it viewed acceptable by other human beings, that a grown adult would post something like this and others not only laugh at it, but also applaud it? Yes, that is where I drew the line and I did comment on how degrading it was. Of course I was met with, this page is for any and all memes and posts. Basically they were telling me to quit being offended. Hmmmm.....Well, it has always been my belief that the 1st Amendment was written with common sense in mind. In other words, just because you can say something doesn't always mean it is right, ethical or necessary to say it. When you resort to this kind of thing, it is pretty obvious that you have nothing intelligent to say and that your only purpose for posting is to be as degrading, inhumane and as much of a attention whore as possible. Well, this guy succeeded on all fronts.

I was respectful to him, although had he and I been face to face I might not have had the patience to hold my tongue as effectively as I did. But then again, I doubt he would have had the gumption to say the things he said to my face. The internet is a powerful fortress for those who are weak of character and big of mouth.

This gentleman then went on to tell me that he too had special needs family members and they thought it was funny. Really? Did they really think it was funny or are they just so used to being degraded by the likes of such a fellow that they don't know the difference? No, I think if he actually has special needs relatives, he is much different to them on the home front. My hope is that he is respectful, kind and caring because every special needs child deserves that. They have to take three extra hard steps for every easy step the rest of us take.

As a mom of a special needs child, I have watched my son fight his way through life and succeed. Every milestone and every moment has been not only something to rejoice over but also a miracle in its own right. When you have seen the pain, wiped away the tears and cheered him on through every surgery and still see such innocence and joy in him, it is more than I can do,  to simply set back and watch someone/anyone degrade him or anyone else with special needs in any way.

I was also chastised for labeling my son as special needs. I was amused. It is not an insult to be "special" in any way. It is merely a fact. My sons needs are special just as are millions of others in the world, whether they are born with chronic issues, are on the spectrum, are blind, deaf, non-verbal, etc. It is not an insult to say someone is special needs. It is however an insult to degrade and dehumanize them for a laugh so someone can draw attention to themselves.

The really interesting thing about this whole disrespecting and degrading the special needs population is, that in David's entire life any disrespect he has received over his abilities has been by adults. Never has a child or one of his peers ever treated him negatively. In fact, David has always been treated with great respect and with great generosity and kindness from his fellow students and friends. They have been some of his biggest cheerleaders and have been great examples of how one human should treat another, regardless of their abilities. Perhaps it is because these kids have all grown up around David. Many have known him since he was 3 years old and they have watched him struggle, fight and ultimately succeed. They see the joy in him and most importantly they accept him for who he is. To them, David is David and they truly care about him.

So yeah, I spoke out. I said my piece and I walked away. There was absolutely no point in having a conversation about humanity with an unarmed man. When I left he was posting more and more degrading posts about people with down syndrome, autism and special needs of different kinds thinking he was getting to me. He wasn't. The fact was, he was showing how desperately he was vying for both attention and acceptance for his unacceptable behavior. All he ended up doing was proving how low his character truly was and how sad a human being he must be to get pleasure from being such a jack a** to others. My only hope is that if he truly does have special needs relatives, that people treat them with more respect and humanity than he treats others.

Soap Box off!

Until next time..........

So How is David?

People ask me all the time how David is. There is an added interest since 2018 was a pretty interesting year for him. Between almost losing his home and his major spinal surgery, people are curious and rightly so.

David started back to school this year in his wheelchair. While the surgery was blessedly easy and his recovery was smooth, getting back to baseline has not been as quick as I had hoped. Much of this could be because I had the wrong expectations having never been through this particular surgery before. Don't get me wrong, he has made great progress, I just didn't realize how long "back to baseline" could take.

Before surgery, David was using his walker almost exclusively at school with only the occasional wheelchair ride to and from school and when long distances were involved. This was amazing except for the fact that because of his spine, his body alignment was horrible and the more he walked, the more he threw out his hip and undoubtedly was causing himself a great deal of pain. Since his surgery though, getting back to walking with his old walker has been an uphill battle. Now that his spine is so straight, it pulls his already tight hamstrings even tighter. This makes walking for him with the walker he was using, almost impossible. He also can no longer get down on the ground and crawl anymore. As bad as his crawling was for him, it actually did keep certain muscles fairly loose.

When his actual walking PT began, we quickly learned that about the only thing his old walker was good for was to help him strengthen his legs by using it to hold onto while he would stand up and sit down. The problem was, he knew he had lost strength in his legs and he himself did not trust them, so he fought the "sit stands" like the plague. Blessedly his physical therapist was able to help get him a new walker that is much more adaptable to his current situation and can be made to accommodate any changes that come as he gets less tight and builds more muscle.

He was also able to get back on his bike, something he dearly loves and which helps him a great deal. Unfortunately the bike was an old bike, which was not in great shape to begin with and since his surgery, has been more difficult for him to use. Still he gives it his all and it gives him a lot of joy to ride it.

Since starting back to school this year, it has been one of David's healthiest years of all time. (Yes, I am looking for a big old piece of wood to knock on as I type this). So far his only hospital time has been as an out patient back in October for his Botox injections and he has had "the crud" a couple of times, but for the first semester he has only been gone about 10 days so far. By this time last year he had been out about triple that. The fact that his seizures are very well controlled now (only about three since last April) and that we work on his immune system through the foods he eats, seems to have made a huge difference in his overall health.

In September, my baby boy turned 18. It was so bittersweet to celebrate this birthday with him. The sweet part was that this young man who left the womb at 2.2 pounds and was only 12 inches long and not expected to make it out of the NICU, turned 18. It truly was amazing. He is basically in good health and other than his chronic issues, he does very well. The bitter part was that my baby was turning 18. It truly didn't seem possible and there was a bit of sadness that his dad and his Grandma Mary who both adored him, were not here to see this bona fide miracle take place. They would have been just as excited as I was.

So a new school semester has started and my young man is still working on getting back to baseline before the year mark of his surgery. He and I work on his core daily and his leg strength. Weekly he sees his amazing PT and his school and teacher are so good about giving him a workout everyday. It is a team effort but it seems to be working. He will also be due for another Botox injection in February which always turbo boosts his abilities.

This past year has been a year of upheaval (more for me than him since I didn't really allow the whole house thing to touch him) and a year of fighting through surgery and recovery. It has also been a year of change as no matter how much I wanted to keep everything absolutely the same for him post surgery, some things were just not possible. That being said, he has adapted fairly well for the most part as he seems to understand that since his surgery, things are just a bit different.

Going forward we will continue to work on his strength, his muscles and his ability to walk. We are also working on his communication and his understanding of when it's appropriate to be loud and when we must be quiet. I really would like to get him to the point that I can take him to church again. That particular outing hasn't worked well in several years, but I am hopeful.

Currently we have no expectation of anymore BIG surgeries. He will continue with his Botox and from time to time he will have to have his shunt, VNS and Baclofen pump updated, but other than that, if the seizures continue to play nice and his immunity stays strong, the rest of this school year looks to be one of his best ever.

Through all of this, we never forget the people who helped us keep our home, those doctors and nurses and EMS people who give their all each time David is in their care, his amazing physical therapist, his equally amazing teacher and his para's past and present who have given their time, care and love to my special young man. Without all of you, we would be nowhere close to where we are today. We ask for prayers for a continued amazing school year and David and I wish you all a wonderful 2019.

Until next time.......

.....And We Survived

Facebook has this "memories" app and each day it takes you back to whatever date it is, each year you have been on Facebook. You can see your old posts and pictures and sometimes it's kind of fun. Lately though, my pictures and posts have been about David's surgeries, hospital stays and ER visits. Apparently this time of year is usually a busy one for us.

Looking back though, there are so many memories of my sweet boy and so many times when I can't believe we all survived that particular time. Honestly, as a mom, I can't believe that I have made it through all the crisis in David's life and am still here to tell about it, but that is what Special Needs Mom's do.....we survive.

Special Needs kids with chronic conditions are often plagued with poor immune systems and are medically more fragile than the average child. Lungs, heart and kidney's often cause secondary issues to their primary conditions. Add into that the medications that many have to take for muscles, anxiety, seizures and a plethora of other conditions and their little bodies are just an ER visit waiting to happen. Then of course there is the sending them to school with all the other kids whose moms didn't think keeping their kid home with a fever, strep throat or that mysterious rash are necessary and we just get set up for more "I can't believe we survived this" moments.

David's moments started before he even left the womb as my hematacrit dropped due to a placenta-previa and I was only 27 weeks pregnant. Being seemingly fine one minute and the next having everyone rushing to get you to surgery and the neonatologist coming to tell you that they will "do everything they can to keep your child alive once born," is quite the end to a pregnancy and quite the start to a brand new life...but we survived. 

There is nothing that makes a parent more desperate than knowing their child is sick, maybe even dying and there is nothing that they can do to protect or save them. I had many of these desperate moments the first three months of Davids life in the NICU. It was a roller coaster ride of inconsistency and emotional turmoil as the day might start just fine, but within minutes turn critical. Many was the time I sat by my sons bed, holding my rosary and begging God not to take him from me. I would watch the breath mechanically go into him and see his tiny body fighting for life and I was powerless to do anything but pray.....but we survived.

How many frantic dashes have I made to the ER under my own steam or by ambulance because of seizures, sickness and other life threatening issues made more relevant and scary due to his condition? Too many to count and I would always find myself back at his bedside, usually alone and praying that hopefully once again it was God's plan for David to stay with me and live his life. The hours spent watching his O2 sats, his blood pressure and his heart rate and the gut wrenching fear that would overcome me each time the alarms would go off telling the doctors, nurses and me that no...he was still not okay were terrifying.....but we survived. 

Of course there were also the surgeries...many surgeries and they were mostly all BIG surgeries that would be hard on the healthiest person, let alone on my little guy. Each surgery was performed by the best in their field, but long hours under anesthesia and risks of infections and post surgery complications were always against David. One time, we almost lost him as he became septic post surgery and he was literally moments away from death. We were at a hospital in another state, away from home and I was by myself, once again praying that this would not be my last moments with my son. And even the surgeries that didn't have such dire post surgery outcomes had their difficulties, such as the spika cast that was basically a cast on both legs from hips to ankles with a bar in between that kept his legs in a V formation. We had to drive 8 hours in our van with his legs like this to get home. Poor guy was a trooper though.....and we survived.

Yes, David is a survivor. He has survived prematurity, a grade 4 brain bleed, strokes, hundreds of seizures, Candida (and all the nasty side effects), two major hip surgeries, leg surgeries, a major spine surgery, the flu, pneumonia, being septic several times, strep throat, hypothermia brought on by medication, 2 post surgery broken legs, surgeries to remove hardware and shunt surgery five times (three of those times were within three days).....and I survived too!

Life as a Special Needs mom is all about survival...the child's and the parents. It's about faith, prayer and the ability not to sweat the small stuff and actually knowing when it is the small stuff. Looking back, these last 18 years have been quite the adventure and mixed in very heavily with all of  the drama has also been laughter, watching my son whom they said would never make it out of the NICU not only survive but also thrive. I have watched him grow and mature into a beautiful young man with a mind of his own, a stubborn streak a mile wide and a wicked sense of humor. There have been trips, mile stones and tremendous joy and those I guess are the way I as a mom have survived, because only when Facebook reminds me of the hospital stays, surgeries and critical moments do I think of it as survival. Day to day as I watch my boy grow and live his life happily and to the fullest, that is just what I call living.

Yes, I am a survivor but more importantly I am a mom to a very special boy and  quite honestly, I wouldn't change a moment of these last 18 years. God chose me.....and we continue to survive.

RockStar

Well it has been about 11 weeks since my last blog post here. My how time flies. Things have been moving right along. In my last blog post, David was still in the hospital. Since that time, he has been home, recovering, had two ortho follow ups and has seen PT. Both follow ups showed that he was doing fantastic and his PT was also very happy with his progress.

This surgery has been the easiest/hardest surgery he has ever had. It was the easiest in respect to how the surgery went and how fast he has recovered as well as how he is progressing. It has been the hardest because of course, what was going on with the house during his surgery and the first part of his recovery and also because this surgery and recovery were foreign to me.

After 17 years with the Incredible Mr. David, I am used to pretty much anything that comes in the world of David, but this surgery has been different. It has really thrown me off my game. I had expectations of something much worse where the surgery was concerned and I was prepared for just that. When everything went well and we were out of the hospital in a fraction of the time that I was expecting, I think it totally threw me. This whole ordeal has been much less of an ordeal from beginning to end and much more like a minor speed bump as far as David's life goes. Truthfully though, David probably felt more of the "ordeal" than the rest of us, but he is a rock star and nothing gets him down.

As I said, the surgery and in hospital recovery were amazing, but again, the at home recovery has thrown me for a loop with my expectations vs. reality. Once I realized that I was not going to "break" David nor undo all that the surgery did, we were good. For the first month we went from the extreme of going back to school to staying closer to his bed than I would have liked but I was on a huge learning curve. Some days he was up and ready to go and other days, not so much. That mixed in with the crazy world we were living in that first month and I was really not pleased once school was out and summer had begun with where we were at as opposed to where "I thought" we should be. I felt that I wasn't doing enough to get him back up and going and that I was somehow failing him in his recovery. It was only after seeing the ortho and talking to PT that I started to feel like we were doing okay. I was also reminded that David underwent an extensive surgery and that it can take 8-12 months before he is even completely back to baseline. We are only 11 weeks out. Sigh......... 

The first of June, David was okayed to get back into his stander. He was still not okay to twist or turn at all as his bone was still healing. They said he wouldn't be completely released until after the 4th of July. Again, there are days that David is up and in that stander for half a day and other days when he seems out of sorts and really not up for all that goes into getting dressed, putting on his braces and moving into the stander and then staying there for hours on end. I feel for the kid and some days I am not up to dealing with his attitude. I have mentioned that he is a teenager....right? Special needs does not mean we don't have attitude!

As the month has progressed though, he is doing much better as is his stamina. I usually try to give him a couple of days a week of rest and then work him the rest of the time. It is exhausting for both of us. I know the rest of my family doesn't realize both the mental and physical fortitude that goes into this whole process for both David and I. Some days....exhausted doesn't even cover it.

Today and tomorrow I am doing my best to rest as starting Monday, David and I are going to hit this whole PT full force. By Wednesday he will be fully released to swim, ride his bike, use his walker, stander and anything else. Life is going to hit the fast lane and he will be my priority for the rest of the summer.

Soon we should be receiving his stair chair lift and as soon as that happens, I am moving David back upstairs to his room and all the things he loves. He has missed it terribly and has on more than one occasion tried to take his wheelchair up the stairs. When he does get back up there, he will have a wonderful surprise as his room will be all Spongebob!!! The room downstairs that he currently resides in will be his therapy room which he will be spending a lot of quality time in too.

Hopefully going forward, I will be a little better with the posts here and the updates. Hopefully there will be many new and wonderful goals met and miracles obtained, after all David is a rock star and he shows us that every single day.