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!