Wednesday, February 28, 2018

Dear Debra

Well, it is February 28th and today David had his surgical consult with his ortho surgeon. Once again they took x-rays that made me cringe...seeing the extreme curving of his lower spine. It makes me want to cry just thinking of the pain he must chronically be in. The surgery date is not set as yet because the pediatric ortho surgeon and the spine surgeon have to coordinate schedules as they will both be doing the surgery. They said I should hear from them on a date in the next few days but that it will likely be the third or fourth week of March.

As if delving deeper into David's upcoming surgery weren't stress enough, I was met with a very interesting woman this morning. I run a couple of facebook pages in my hometown. One is more of a nostalgia page and the other is a city issues page where people can speak about their concerns and issues with the community. With both I try very  hard to keep positive and kind and it is my small way of giving back to our community....a community I love and yes....a community I have had to rely on from time to time.

This morning I was met with texts and messages saying that a woman was being very hateful on our city issue page about my families current situation and my asking for help and getting fundraisers in place to help save David's home. When I went to the page there was nothing there except a new post where she was commenting that her post had been removed. I just assumed she herself had removed it. 

Her complaint in a nutshell was that she felt I was sitting back, living off the system, doing nothing and asking for handouts. Her reasoning on this though was interesting. She feels this way because she too is a special needs mom with a grown son whom she has "worked her butt off" to take care of all these years. I assume, but never asked....that she is also a single mom. She feels that I have taken my life and thrown it out there and I guess....trying to get sympathy and get help instead of getting up and doing something about my situation.

Now I am a grown woman who has dealt with a lot of crap in my life and I am in no way thin skinned. I can pretty much take what anyone throws at me, but currently....things are a little rough and I really have had to process this whole thing. I will admit that I was a little shocked by it all, especially since 1)I don't know the woman at all and 2)the fact that she is a fellow special needs mom.

What many don't know is that this is not the first time she has let me know her opinion of me. About a week or so ago, she messaged me about midnight and told me pretty much the same thing. Again, I was pretty shocked. I was very nice to her and told her that I wasn't sure where all of this was coming from and I explained a little of my situation to her. The next morning she kindly apologized to me and I told her not to think anything of it. Life went on, or so I thought.

This woman seems to be very angry at me and I am not really sure why, although I can guess. She feels that she has worked all of her life for her son and that in her opinion I am doing nothing except asking for handouts. It is of course, not a fair assessment of my situation but, from the outside looking in, I am sure that in her mind it is accurate. This though, seems to have become very personal to her and I think she is trying hard to embarrass me (too late, I was embarrassed over this long before she chimed in) and I think she wants the entire world to see me as she does....fair or not.

I've known a lot of mothers with special needs kids and never have I run into one like her. Most of us never would think to judge one another because we all know that all our journeys to this place are very different along with our circumstances. Mostly though, we all know that being a mom of a disabled child is tough. There are no rule books and each child is different. How each family or parent handles this gift is different and to assume that "your way" is the only way is both arrogant and incorrect. So after taking in the events of this morning, I thought I would simply write a letter in a blog and clear the air.

Dear Debra,

First of all, let me say that I have nothing but respect for you. To be the mother of a disabled son who is in his 30's and for supporting him and caring for him all of these years, you are amazing in my book. I will say here though that I have no idea if your son lives with you or in assisted living. I also have no idea whether you are married, divorced, single or what. Truthfully it doesn't matter. All that does matter is that you took the gift God gave you all those years ago and you have done your best all of these years regardless of how tough it got (and you and I both know that it did from time to time) and you have taken care of him. Again, I have no idea what his disabilities are or how severe they are, but doesn't matter. All that matters is that you have been the best mom you could be for this child and that deserves the up most respect from anyone you meet.

As for my situation......You seem to think you know my whole story. You do not. And that is okay, you don't have to. All you need to know is that I too am a special needs mom. I have worked and fought since the moment my son was born to make sure that his life was as good and positive as possible and that he was as well taken care of as possible. That in and of itself should be enough to garner the respect of others, especially those that know how difficult raising a disabled child can be. It apparently is not, so please, let me elaborate.

There have been times in my life as a mother, that I have worked 2-3 jobs that had me working from 5 a.m. until 1 a.m., sleeping only four hours per night. I am certainly not afraid of hard work and I have certainly done a great deal of it in my life. Since David's birth though, that has not always been possible. David has had many fragile years that have kept me home and close to him. There was simply no other way.

Then there were the times that I did work. I worked very hard and I loved every minute of it, but my employers always knew that David was my priority and when he was sick, in the hospital or having issues with seizures then I was by his side. That is how I view my role as his put him first at all times. And I can't just leave David with just anyone. David is non-verbal. He is a target for someone with less than compassionate care giving skills and yes, we have been down that road. David has been in the care of people who have verbally abused him, dropped him and neglected him. Once that happens, you trust very few people. Still and all, I have done my darndest to get respite care for him and I have been turned down every time because in order to get quality care, I would have to pay more than I would make at a job. So my not having an out of the home job is not laziness or lack of ambition.

You mentioned that I could be working while David was at school. True except for the fact that David has been out of school more days than he has been in school because of his health. He catches every bug that comes along because of his immune system. These usually cause fevers which spark his seizures. He also has really bad days with his muscles that make it almost impossible for him to get around. And then there are the nights where he doesn't sleep. This then means he can't function at school. Oh and the shunt malfunctions which happen out of nowhere. We had some real fun with that in January, with three shunt surgeries in 3 days. Now we have a spine surgery coming up which is going to take months to recuperate from. Add in to this all of his therapy appointments, specialist appointments and the intermittent doctor appointments and ER/hospital visits and you tell me how hirable I am.

What you probably don't know, is that when I am not taking care of David, I take care of another special needs lady daily. I take in laundry and ironing and yes I have been known to make the occasional cheesecake. I also clean, cook, do my own laundry, take care of my grand kids and help anyone who asks for my help and believe me, that happens more than you would think.

One of your greatest complaints seems to be that I have a large presence on facebook. Really, it is no more than anyone elses until recently. I run several facebook pages and it is all to give back to my community. I also spend a great deal of time trying to give back in other ways and encourage others to give back too. I spend a lot of time trying to hook people up who have needs with others who might help them. So yeah, I owe my community a lot and I try daily to show my appreciation.

Yes, I asked for help over this house situation. It was a situation that was both embarrassing and humbling and as someone pointed out, it was not the first time I had to ask. It was always for David though. Never for me. You also made a comment about me living off the system. That was especially offensive to me. I live off of social security death benefits. They are benefits that my late husband worked hard for so that he could take care of his family and because of this, he has been able to help continue to take care of us even since he's been gone. I have never used food stamps or taken welfare of any kind. That to me is for people that truly need that help and I would never take from people in need. So no, I don't live off the government or the system. I live off the money that my husband made while he was alive. There is absolutely no shame in that. And truth be known, even if I had been working a 40 hour a week job, if this had happened, I am sure I would still have needed help.

So Debra, I am still not sure why you find my situation so distasteful. It feels rather personal, but then again, it couldn't be.... because you don't know me. What I do know though is, we both have tough roads in this life and we are both doing our best to give our sons the best that we can, regardless of how that might look to the rest of the world. I also know that I admire your strength. It takes great strength to do what we do. And finally....I also know that if the time ever comes that you need help, there will be no question, no judgement and no memory of this current situation. All there will be is kindness, compassion and as much help as I can give you. After all, that is what it means to be a special needs mom.


David's Mom

Tuesday, February 13, 2018

Spinal Surgery and Stuff

It is so strange to see my sons face on a t-shirt design. It is absolutely surreal to be dealing with the "why" it is there.

We are knee deep in fundraiser plans and the bad thing about all of this is, life doesn't stop just because your life is in crisis. There is much to do to plan this fundraiser and I spent the better part of this day going to appointments and doing things for David that simply go along with the life of a special needs child. Today he had his pre-surgery physical therapy appointment. I went in there with plans that we would likely get him fitted for new orthotics (leg braces) but instead she just made sure that his current orthotics will keep him going until surgery. Why? Because after surgery, everything from his orthotics to his wheelchair to the kind of walker he uses will have to be changed. I had no idea.

In March, David will be having spine surgery to correct the curving of his spine which is common in kids with cerebral palsy. The curvature can happen in the upper spine, lower spine or mid spine. If uncorrected, as they enter adulthood, the curving can cause a moving and even crushing of organs like the heart and lungs.

In some kids and especially nonCP kids, the curvature can be fixed non-surgically with a back brace. David's CP however, made that impossible although we did try. So now we do surgery. David's curvature is in his lower spine and the surgery will either be a fusing of the vertebrae, a metal rod placement or both. The procedure will likely be extended a few inches above the curving area to get the best outcome.

You know when you have a chronically ill child with things such as cerebral palsy, seizure disorders, etc, there are three kinds of moms. You have the kind of mom who literally spends every waking hour on WebMD and chronic illness sites trying to soak up every ounce of knowledge and information she can on her child's illness/disease. These parents live, breathe and sleep their child's condition, constantly on the look out for the worst case scenario or at the very least, very sure that if something becomes an issue, they will catch it early.

Then you have the moms who just completely go with the flow and never even ask a question, check out a web page or check out anything in reference to their child's illness. They simply can't handle the what ifs, so it is just easier not to worry until they have a reason. This is kind of an ostrich with his head in the sand scenario and this becomes a huge issue when something does happen and the family is not prepared for that particular outcome. Ignorance is a poor excuse when you have a sick child.

Finally, you have moms like me. I am a cross between researcher mom and head in the sand mom. I ask a lot of questions of the physicians and medical professionals in Davids life, but I seldom research his illnesses simply because it would literally make me paranoid and insanely crazy. I know myself too way too well to put any of us through that. Besides, most of the information out there is so generalized  and if I am going to get information, I want it to be from professionals who know my son, have worked with my son and who can give me information pertaining to my son, not a generalization of the CP population. If I need the blanks filled in, then on rare occasions I will do the minutest of research but only on VERY rare occasions.

So today, I decided to get some info on his surgery from his physical therapist. My reasoning here is that she gets the kids in the aftermath of the surgery. She has a baseline idea of recovery time and what is entailed in the recovery. After talking with her, with all that is currently going on in our lives, I almost wished I hadn't. But....when talking to the right people....knowledge is power.

David previously has had two hip surgeries, which have put his hips back in their sockets and helped to reduce some of the tightness that CP kids often get in their muscles. These surgeries have been instrumental in helping him to get to the point in his life where he can get around pretty well on his walker. He still has to go long distances with his wheelchair, but he can make 1,000 or more steps per day. He also has Botox injections every 4 months to help the tightness in his hamstrings and help him to build muscle where there was originally nothing. He has fought through two really tough hip surgeries to get to this point. With one of those surgeries he almost died within hours of having the surgery. The recoveries have been long and difficult but each time his quality of life has improved and throughout both surgeries and recoveries he has maintained his smile and his joy for life.

Now this surgery. In the last few months I have noticed that David's right hip seems to be having trouble when he walks with his walker. This is due to his spine alignment. It throws his hip out badly and from what I understand, this causes a lot of pain. You would never know he is in pain as he walks as quickly as he can excitedly greeting anyone in his path, but there is no way (according to the doctor) that he is not in pain. It breaks my heart to think with all he has endured in his short 17 years that he might be in constant pain. This spine surgery should help his hip and the pain. Post surgery, his spine will be straight as a string and it will allow him no rotation in the upper body. This new straightness will help pull his hip in and when he walks, his body will be more in alignment. It will also affect his feet, knees and lower legs.

The surgery itself, depending on whether they do fusion, rod or both can last from 4-8 hours. This terrifies me because David and anesthesia don't get along well. It does awful things to his body when he is under for more than an hour or so. So, that in and of itself makes me cringe right down to my toes. Then following surgery and post op, he will likely be in PICU (pediatric intensive care) for 3-5 days. He will then be moved to the general pediatric floor where he can stay anywhere from 5-7 days. It wasn't until today that I fully realized that I could be moved into Davids hospital room for almost two weeks...and NO....I won't be leaving his side. 

Then comes the fun part where we have to figure out how to get him and his fragile healing spine home. It terrifies me to think of having to get him in my (non handicap accessible) van, getting him home and then getting him out again.

Once home David will have another 6-8 weeks of recovery. Slowly he will be given the okay to first sit up, then sit in a chair and then move to his stander where we will have to stretch everything from his shoulders to his feet. Once we are there, then he will start water physical therapy. Water therapy is amazing stuff and he will have a PT in the water helping to strengthen him and getting him back to normal. From there he will go back to regular PT where he will work out on the Total Gym, ride his bike and get back into walking with his walker again. It is a long process which will entail a lot of pain, effort and fortitude and it is definitely not for the weak of spirit. Did I mention this all makes me cringe? 

March 1st, is the day we see David's orthopedic surgeon and get the plans underway for this surgery. Within a couple of days of the appointment, if not the day of, we should have a date set for the surgery and my brain will be mush until he is completely recovered.

Perhaps this whole house thing has been a blessing in the fact that it has gone a long way in keeping me focused on things other than David's surgery, although today, the surgery issue came back and hit me full force. It is scary and I wish that it was the only thing in my world currently that I had to worry about. Unfortunately, it is not and I can't help but be just a little angry thinking that I hope those who put us in this situation never have to go through what they are putting us through right now.

In the midst of all of this upcoming surgery, the Save David's Home effort remains in affect. Plans for a fundraiser on March 10th are well underway. We are still selling two designs of t-shirts. One design is on the top of this page and we still have our YouCaring, Carson Bank Donation account and our Paypal account working to get enough money to save David's Home.

The greatest miracle for me would be if David's home was safe and sound and worry free before this surgery so that nothing would distract from his surgery and recovery. It is my greatest prayer and again today, I ask you all to pray like crazy, to share my blogs, the Save David's Home facebook page, t-shirt page and donation pages. I know I'm asking a lot, but trust me, I will pay it forward for the rest of my life.

So until tomorrow....happy Tuesday!


Thursday, February 8, 2018

Dear Ellen

It has been awhile since I have posted here. There have been a multitude of reasons, but I really don't have time to go into all of that. In fact, I really have very little time for much as our life, mine and David's is about to take a huge hit.

February 2, 2018, my mind was fully on the upcoming surgery David will be having in March. Along with all of his other chronic issues, he also has curvature of the spine. It is very common in kids with cerebral palsy. As they grow, their spine continually curves. Most can't just be fixed with a back brace because of their muscle tone, so it is a delicate decision when to do the surgery. The doctor was waiting until David had 60% curvature. After 60% then the curvature can start causing real problems to the point that it can start crowding organs and cause brand new issues that shorten life expectancy and affect quality of life. Already, the curving has caused noticeable leaning which when he walks with his walker  affects his hip which although David never complains, has to cause pain.

The surgery is a 4-8 hour surgery with a stay in the PICU following and then a stay on the peds floor and then a lengthy recovery at home. We chose March to do it because the cold and flu season would be almost, if not completely over and David would have enough time to heal so that by summer he could be doing water therapy in his pool.

The surgery itself scares the bejeezers out of me because it is a spinal fusion. His time under anesthesia will be very long (David doesn't do well with long surgerys and that much anesthesia) and quite frankly, we aren't sure what Davids walking, sitting and moving abilities will be following the surgery. Yes, he should be able to sit, stand and walk better, but........ Once again, we will be dealing with a whole new set of normals.

It was my intention that while David was recuperating downstairs post surgery, that I would finally finish redoing his bedroom all in Spongebob. (Yes, he will be able to go upstairs after the recovery, because he will have a stair chair.) I have literally imagined how excited he would be the first time he goes up those stairs to see his Spongebob room. It is part of what has kept me going, thinking about this surgery. In fact, I never thought anything would or could take a back seat to the worry over the surgery. Apparently somewhere out in the universe though, someone said, "Hold my beer....." because February 3, 2018, I found something that is giving the worry over Davids surgery a run for it's money.

Going back a bit, the house we live in is the house I grew up in. My dad purchased it for my mom and us kids back in 1976. My parents were divorced and this was part of their divorce agreement to each other. Mom lived in this house until her death in December of 2002. In February of 2003 my dad approached me and asked if my kids and I would like to move into the house. We had been living in a mobile home outside of town since my husband had died unexpectedly, just months after David was born. Moving back to "my" childhood home gave me some piece of comfort as I had three boys and I was on a journey of raising them by myself, something I had no idea I would be doing. I did verbally make sure at the time that if we moved in that he wouldn't decide to up and sell the house and uproot us. He said that he would deed the house to me upon his death. This is a verbal promise that has been made to me over and over again in the last 15 years and the last time was July of 2017. "You will never lose your home! That is your home!" He was my dad. I never questioned it's validity.

On February 3rd, our whole world blew up. I was called to my dad's, where my brother handed me a letter of eviction stating that we had until March 1, 2018 to be out. It was also stated that anything left on the property such as pool, deck, shed, etc, would become their (my dad and brothers) property. Now come is February in Kansas. Most days our temps are not above the 30's. The pool is frozen solid but we are to have it drained, dismantled and removed by the 1st? We are talking a 18 x 33 foot pool.

According to what I was told, their thinking was that my dad wanted the money in case he had to go into long term care. Fair enough. I was told that I could purchase the house at 75% of the appraised value, them both knowing full well that we live on social security and I stretch that from month to month and that due to life, I couldn't buy a stick of gum with my credit. However, regardless of their reasoning, this thing was done behind my back and premeditated, giving us no time to prepare for anything. It was a devastating blow for many reasons but the most import was David.

David is potentially about to lose the room he loves, the home he loves, possibly his dogs. He is going to lose his pool that was donated to him, possibly his school, teachers and classmates and everything he has known for almost his entire life. When I reminded my brother that David was having a major surgery in March, his reply was...."Well you'll be moved out by then." Really? Who says or does that?

It took me a few moments after leaving "the meeting" with them to get my wits about me. It was a blow that came out of nowhere and I had to find a way not to implode David's life and all he knew. David just doesn't handle change well and this is more than just a little change.

David and I live in an amazing community. There is true goodness and kindness all around. The community of Mulvane has gotten behind us and are trying to help raise the 75% so that David can keep his home. It is no longer just mine and David's fight (which is what I am used to) but we have warriors all around us, selflessly fighting right along with us. Unfortunately we are talking about 75% of $104,000.00 plus closing costs and I believe my brother mentioned contract fees, so this is not just an easy thing. This is a daunting task and March 1st is drawing closer with each passing second.

There is a fundraising site YouCaring, that many have graciously donated to, and for those that don't like those sites, there is a PayPal you can donate to with the email address and finally for those that feel a bank is the only way to go, there is a donation account set up at our local bank:
Carson Bank
P.O. Box 158
Mulvane, KS 67110

There are also fundraisers being planned and people offering their help in anyway possible. I am overwhelmed and beyond grateful that people in our world as well as complete strangers care so much that they are generously doing what they can to help. I can't even fathom the kindness.

One of the biggest things and probably the greatest long shot, is that many have turned our story into the Ellen Show. I was amazed when I heard that so many people had been sending our story in, but I am fully aware that we are one of a million people that need help and our story doesn't compare to some of the need out there, however.....even a long shot is worth trying. So in trying to get others to continue sending our story in, one of the people trying to help us posted on facebook that she would like to see stories about David and what he means to people. Well.....this entire blog is David's story. I started it years ago and it is a time line of Davids life. But I decided I would write this today and tell Ellen and the world what David means to me.

Dear Ellen,

My son David is 17 years old. That just sounds like a statement, but in fact.....that in and of itself is a miracle. David was the gift we didn't know our family wanted or needed. He was the most wonderful surprise when we found out we were pregnant, but the unthinkable happened and David was born prematurely at 27 weeks, 13 weeks premature. He weighed 2.2 lbs and was barely 12" long.  He had a grade 4 brain bleed, seizures, strokes and he got Candida (a yeast infection of the blood.) He was on a vent in the NICU for 3 months with the doctors telling us that he was "beyond critical" almost daily. More than once we were told that he wasn't going to make it through the day, so to prepare ourselves. He was a miracle though and after 5 months in the NICU....we brought him home. Sadly, his father only had a few more months with him, then he died suddenly of a brain aneurysm.

Since the moment of his dad's death, I have done it all alone and as hard as it has been at times, I am honored to be his mother and to have the job of raising him. David has cerebral palsy, hydrocephalus, he is hearing and visually impaired, developmentally delayed and he has a seizure disorder. More than that though, David is an inspiration! He has undergone painful surgeries to help his muscle tone and help him walk with a walker. He has come close to death several times and from what I understand, much of the time he is in pain. You would never know this though. He just keeps going.

David, although very developmentally delayed is also very smart. He doesn't speak but he never seems to have a problem getting his point across. He is funny with an amazing sense of humor and his laugh is so contagious. He can't help but snort when he gets tickled and everyone in the room can't help but laugh right along with him.

David has taught me that we all have our issues but he has never let his disabilities or issues get in his way. He loves life and he loves the people in his life. He has also taught me that normal is just a word. He has taught me patience, the beauty of life and what it is to love a thousand times more than I ever dreamed possible.

David's favorite things are his 9 year old corgi Spud, anything that makes musical noise (I was in the process of getting him a drum kit), his 4 year old niece Willow, Hot Wheels cars and watching Spongebob and Cops. He loves music and he especially loves to hear his older brother sing.

David appreciates the smallest things and never complains about anything. He pushes himself like no other and at times makes me ashamed that I can't keep up.

David is involved with Circle of Friends at school which is an organization which has general education kids as peers for the special ed kids and together they go on outings and do fun things together. The kids all love him. He has known them all of his life and they have learned how to communicate with David and to love and appreciate him as the special human being he is. It is an amazing thing to see.

Ellen, David has spent his entire life fighting and yes that is quite an accomplishment for a 17 year old who wasn't even suppose to get out of the NICU. Because of Davids diagnosis's, there will be more pain in his life, more surgeries, more scary moments, but David will fight it all and I have no doubt win because of his strength of spirit and his love of life. With all of this though,  David simply doesn't deserve to lose his home. He doesn't deserve to lose everything he knows and loves and he doesn't deserve to maybe have to leave the town and the people he has grown up with and who love him.

So yes Ellen, I am begging for some help. I am a mother and I checked my pride long ago. I will do whatever it takes to help my son and if you can help, I promise to spend every day of the rest of my life paying it forward.


Lisa Elam
aka David's Mom

Monday, March 27, 2017

I Am Still Me!

Special needs parenting. is rewarding and somewhat awe inspiring to know that God chose you as the parent of your child, but to be completely honest, it is also hard! No not just hard, it is really really hard.

Since David was born I have had people come up to me and say, "Wow! I just don't know how you do it. You are amazing." I always cringe at the word "amazing" in accordance with my parenting skills, but my pat answer to this remark is always, "You do what you gotta do." Truthfully though, I don't know how I do it either. It is constantly learning, fighting, arguing, researching.....and did I say learning, fighting, arguing, researching? Most of all it can be just plain old exhausting.

All new parents are on a learning curve, but being the parent of a special needs child, especially one with extreme issues is off the charts scary. Information either comes at you fast and furious or it doesn't come at all. It is an endless stream of red tape, phone calls and entities in which one hand does not know what the other hand is doing. Before I became Davids mom, I was pretty mild mannered. I held doctors in high esteem and would never have thought to question one and the thought of fighting with an insurance company, social security, lawyers, schools or anyone else was so far out of my comfort zone that it was unimaginable. Having a child with special needs though, changes all of that. You learn right off the bat that your child is different and all the politically correct BS in the world is not going to change the fact that in the eyes of just about everyone (often times this includes family) your child is viewed differently. If like David your child is non-verbal and yet noisy, awkward to the world with touch and movement(David does not view himself in the least bit awkward, but others often do) or just the fact that he has adaptive equipment such as a wheelchair, orthotics and a walker.....then he is seen differently. People are uncomfortable, awkward and sometimes in their great efforts to be PC are incredibly offensive. It all just simply comes with the territory. Special needs parents know this and take it in stride. 

Depending on your child's diagnosis you can be looking at years or even a lifetime of uphill battles and well meaning people....which I guess is to be expected and something that most doctors, social workers, etc can tell you straight out of the gate. What they don't tell you though is all the hours you will spend trying to defy the diagnosis or how many hours you will spend researching doctors, therapies, insurance, equipment and schools. You aren't warned about the "new" issues that can occur in an already health compromised child. And....if you are doing this as a single parent, they certainly don't tell you how many sleepless nights you will have listening to your child sleep waiting to hear that one sound that isn't quite right that can mean the onset of a seizure.... or worse. You aren't warned about how many times the mild mannered you will have to pull up her big girl panties and go to war with school administrators, doctors or agency's that are suppose to have your child's back but don't. No one tells you how many hours of how many days of your life you will spend on the phone holding to talk to someone.....anyone who can give you answers about your child's health, insurance, equipment or therapies. And although the second your child starts to school you will be told that YOU are your child's voice and their greatest advocate, you have no idea how many times that you will be ignored or how hard you will have to fight to have that voice heard. 

What you aren't told is that it doesn't matter how many kids you have had previously, nothing prepares you for a special needs child. It is as if you are starting fresh and you never knew anything where parenting is concerned before this child. Everything from holding and feeding your child to changing your child can be different and even life altering if done incorrectly. Everything is different and everything is scary. Milestones are different too. What you take for granted in your other children....holding up their head, rolling over, holding their bottle, sitting up, crawling, talking, walking, etc suddenly becomes questionable. Some or all of those milestones are not met on time and truthfully may never be met. If you are honest, those milestones become incredibly important and if they are met, are celebrated with a joy that you never before understood. You simply take nothing for granted anymore.

Along with the extreme praise people tend to pour on you for somehow doing the miraculous and living life along with taking care of a special child, you also are hit with a great deal of judgement. Some people seem to think that cerebral palsy, autism or downs syndrome are somehow caused by the parent. I have been asked up front by "well meaning" people if I drank, smoked or did drugs while pregnant with David. The answer is a resounding "No!" In fact, I got excellent medical care, followed my doctors orders strictly and took care of myself. After all....I was no stranger to having kids. David was born prematurely due to a placenta previa which simply just happened. His resulting health issues were all due to his being born at 27 weeks instead of the normal 40 weeks. People though seem to think that somehow I must have done something to cause it. What I have come to accept is that people are going to think what they think. I just don't have the time to worry about it.

I have also been judged quite harshly for not working outside the home and holding down a job since money or lack thereof is always an issue. After all.....I have a special child who lets be not cheap and yet I "choose" to stay home. If only people knew or at the very least took the time to understand. We live on a fixed income, never go out, never eat out and never have extra's not because that is my choice but because that is my reality.  Our income goes to utilities bills that are too high, a house that is 50+ years old and is falling apart and food and if there is anything left over at the end of the goes to whatever David needs and David always needs something. 

To be honest, I have held several jobs during Davids life and I was pretty darn good at all of them. The problem though was that when David has an issue, whether it is related to his shunt or his seizures or any aspect of his health, it is immediate and often threatening. This means no matter what I am doing, I have to drop everything and go. It is a rare employer that can have an employee do this....regardless of how good the employee is. Some of Davids health issues have required hospital stays or round the clock observation and in my world, David always comes first. So with the exception of a business that closed, I have been let go of my other jobs because my life and my job were simply not compatible. Even though it seems futile though, I have still searched for the occasional job hoping that I might find that elusive employer who would let me work from home, the hospital or wherever I was, but instead I have been deemed "unemployable" by most. This means that added to the stress of raising a special child, there is also financial stress. ALWAYS financial stress. 

Finally, I have been told that I am no fun. Many of my friends have given up on me as they are all at an age where their kids are grown or at least old enough to take care of themselves, so they are free to go to dinner, go to movies or have a Saturday night out with the girls. I almost never am. Other than school, I am David's 24/7 caretaker. I of course could go through the red tape and get respite care, but not without paying a 1/3 of our monthly income every month. Trust me I have been down that road and hit a brick wall every time. And unlike a parent with other kids, I can't just call the teenage neighbor girl over to watch him, as he takes specialized care. So needless to say, I don't go anywhere. I have been labeled no fun and my friends have just given up asking me to go anywhere as they know my answer is almost always an "I'm sorry but I can't." Try as they might....they simply can't understand and I am tired of explaining. My world is just so different than theirs. what am I saying here? I am speaking the truth. I love David more than anyone can ever know. David has taught me so much about myself, about life and about the person I want to be. I am blessed to be his mother and everyday I do thank God that He chose me for David. That being said, being the parent of a special needs child is as I said before.....really really hard. It is a hard that only another special needs parent can know and understand. So where does that leave the rest of the people in my world? You can accept that while you may sympathize with my life, that you will never truly understand what my days are like....and that is okay. I am not a fan of sympathy and I understand that you simply can't. Just don't judge me when my hair is uncombed and I am without makeup after David has pulled an all-nighter with stemming and yelling out. Don't assume that I don't work outside the home because I don't want to and please don't make me the friend pariah because I am not free to go out and play. I still need friends....because somewhere deep inside....I am still me!

Sunday, January 1, 2017

A New Year....A New David Blog!

Yes, I has been eons since there was a David update. My bad. No bad! I have redirected my efforts on life and because of that, blogging was kind of left out in the cold. I hope to be better in 2017, but I make no promises as I plan on being very busy we shall see.

So what is David up to? Well, he is nearly as tall as I am. By most human standards, I am short but for David, he has grown leaps and bounds. He turned 16 in September and he started to school four days per week at the high school back in August. This was extraordinary, as if you remember last school year, Davids seizures were getting a little out of control and scary and he had to be taken out of school for several months. When he did go back in February 2016, he went back to a four day schedule, taking Friday's off as that was his therapy day at Heartspring.

Through the summer, David gained a lot of strength and his seizures became almost non-existent. His meds and his vagal nerve stimulator (VNS) were keeping them well controlled. He was also getting much stronger with his walker and his bike. It was the first time in many years that we were able to feel some kind of normal as a family.

When school started in August, God was obviously answering prayers as we were blessed with the most amazing teacher for David. She actively volunteered to go to his out of school physical therapy both during the summer and during school. She attentively listened to everything his PT (physical therapist) said and went back to school and implemented every detail into his school life. Because of this, David went from being mostly wheelchair bound during school to walking most of his day with his walker and without wheelchair assistance.

This school year has been one of the best David has ever had. Until November, he had missed almost no school and was doing absolutely wonderful. In November and December, he had a few seizure issues (mostly from a growth spurt and out growing the therapeutic levels of his meds) and he caught a couple of bugs that were running around the school, but all in all.....his first semester was nothing short of a miracle as far as school years go.

One thing that both was amazing and terrifying all at once for me,  was the fact that in December, his PT told us that December would be his last PT for awhile. When she told me, I could literally feel my heart almost stop. I had no idea how much "I" had emotionally come to rely on his weekly therapy with her and how much she had become my compass on how he was doing physically and how I was doing as his mother. Sound silly? Trust me, when you have a special needs child, you get your reassurance whenever and wherever you can. Although his no longer going to PT (for awhile anyway) felt like a gut punch to me, for him it was an amazing thing. This meant that all of the goals she had set for him....he had met. As she explained it to me while I hyperventilated.....he had gone as far as he could at his current strength level. In order for insurance not to come in and control his therapy now that he had met his goals, she was voluntarily backing off his therapy so that if for some reason he had a set back, he could get right back in. However, if she didn't back off now, insurance would likely mandate that he couldn't be seen again for a year and if he would happen to need PT in that year....he would be out of luck. This way too, we have a whole new semester (few months) to work on his strength both at home and at school. As his strength grows and at the rate he is May or June he can be re-evaluated and if he is ready, a whole new set of goals can be set such as climbing stairs, standing up with the help of only one hand or even possibly taking steps on his own without walker assistance. Then he can return to PT.

I know it is an amazing thing that he has made it so far and continues to progress, but looking at this new year without regular, weekly PT is still a bit terrifying to me. She assured me however, that I can handle this. I hope she is right...and because we will not be going to PT on Fridays....David will now be back in school on a Monday through Friday schedule. Routine is a wonderful thing for him, but I have to admit that I will miss our late mornings on Fridays and not feeling rushed to be out the door. is a small price to pay to see David happy, healthy and progressing.

Christmas break has been a good one this year. As usual we have all passed multiple bugs back and forth and because our house has been fuller this year than normal, there seem to have been more bugs than ever before, but through it all, David has stayed pretty healthy.

Now that the new year is here, my work is really laid out for me. Since we won't have weekly PT, we have much that must be done to strengthen him both at home and at school. He will actually go from 1 hour once a week to at least 30 minutes every day. He will have to keep up with his walking and it was even suggested that with some of the strengthening he needs both upper and lower body, that perhaps I look into a gym membership for him. We will see if that is even possible.

Yes, I am feeling a bit overwhelmed but in our world right now, things are fine. We are blessed to have all that we have and David continues to be a trouper, fighting a condition every day that would crumble even the strongest of most of us.

So there you have it. We are starting the new year on a positive note and hope to maintain the boring monotony that is currently our lives for a long time to come. And perhaps....this all will give me a little more time for writing the occasional update more often. Who knows....only time will tell. 

Saturday, June 4, 2016

Goals Met and Such.......

In the past fifteen years, there have been so many roller coaster rides. If you read this blog or follow David on Facebook, then you know, and you know I have taken you all along for some of those tougher rides. Currently though, things are exciting. This doesn't mean that the minute I push "publish" on this blog that we won't be right back on the roller coaster, but it does mean that right here and this moment.....David is doing and accomplishing things that he has never done before. He is making daily and consistent progress and yesterday after PT, I had to take some alone time and shed a few tears.

Yesterday at PT, Davids therapist did an updated evaluation on where David is at as to where he was a year ago when he started with her. We set goals back then for David and while he made a little progress here and there, he had a lot of set backs with seizures and his health. We missed a lot of PT sessions and for a while, he lost a lot of ground physically. In January, I almost quit sleeping over the state of David's health.

If you remember, David was doing home bound school because of his seizures. He was throwing them almost daily and sometimes multiple times in a day. He was fairly inactive and even though he was having HB school, he was just losing so much. His little body looked frail and his ribs stuck out like razors. I saw it and was trying to figure out what to do as I met with doctors, his PT and his school team. It was getting pretty devastating.

It was at this time I started researching alternate ways of eating, diets that worked for kids with cerebral palsy and foods that would help to build muscle in his body and strengthen him. Once the diet was in place, we hit the PT strong. The diet seemed to be keeping him healthy and we were seeing less and less seizures.

Then came the botox. I knew so little about botox but both David's PT, whom I trust implicitly as well as his neurologist whom I trust even more, supported botox therapy for him. I had to try for his sake. After his first week of weakness and my constant fear that something would go has been one of the greatest things that has ever happened for David.

So at his evaluation, his PT proudly told me that David has met or surpassed every goal that she had set for him. He can ride his bike, he can walk in his walker without a seat and he can walk pretty good distances with his walker. It was like he got straight A's on his report card and I was so excited I wanted to cry right there. So as these were all met, we had no choice but to set up a whole new set of goals and one of them is......standing on his own! It literally took my breath away.

David is very determined, but even with his determination.....he will have obstacles ahead. They are the kind of obstacles that to this mom are terrifying, but they are also an ends justifies the means scenario, if the outcome is that David is independent. Currently we are getting David as strong as he can be from head to toe and diet and PT are the keys to this. Then there will be his spine surgery which at this point looks to be a necessity. If not done, then eventually the curvature will start crowding his internal organs and make standing impossible. After that recovery and re-strengthening....then there will be the decision to see if he needs his hip done again. You might remember that after his last hip surgery he broke his leg and in the process of the leg healing, his hip fell back out of alignment. If that surgery is necessary, then he will have to heal and once After that though.....the sky should be the limit for him.

It is a lot to process and a lot to keep this mom from sleeping some nights, but it is also exciting. So much has to go into the next couple of years of Davids life and one thing his PT really wants is the gradual banishment of his wheelchair. Yep, she wants him using only his walker as his means of mobility whether it is at home or at school. This means....Mom, teachers, para's and all those who participate in David's day to day life are going to have to be strict with him, patient with his progress and huge cheerleaders in his life. I have no doubt we can all do it. I mean really....who doesn't want to see David achieve his independence?!

So yeah....standing on his own. Those are words that I had been told to never even think about where David was concerned.....let alone hope for. Now they could be his reality. Now.....maybe you understand my tears. I said....this summer is exciting and soon we will add the pool to our daily therapy. David is amazing and apparently he maybe walking yet. We will keep you posted. Until then....Happy Summer Everyone!

Tuesday, May 24, 2016

Schools Out for Summer

Can you believe it? Today is David's last day of school for the 2015-2016 school year. You can almost hear Alice Cooper singing in the background. It doesn't even seem possible. It has been quite a year.

As he was waiting for the bus this morning, I couldn't help but watch him and think what a handsome young man he is. Yes, I know ALL mothers say that about their kids, but to me.....he is so handsome. He looks just like his daddy and he has the most infectious laugh and smile. He is growing up so fast and every day I am blessed beyond words that God chose me to be his mother.

Looking back, this year has had it's highs and lows from the surgery to remove the plates in his knees and leg, to his seizures that came back with a vengeance to home bound school. He had a few hospital visits mixed in and he gave me a couple of scares that only David can give.

On the flip side, he has an amazing PT now that has pulled so much hard work out of him. Now that the medal plates are gone, he was a good candidate for botox and that has been amazing and finally....he ended up in the high school with a wonderful team and has thrived since day one. All in has been a really great year.

I think of all of Davids school years, this one might have been the most educational for me. I have learned so much about David and Davids world. I have learned more about cerebral palsy and a little about autism....and I have learned a great deal about just how strong and determined David is. A doctor told me once when David was in the NICU, to never underestimate David and to never count him out of anything. Boy was that doctor correct. The older he gets the more amazing David is.

So now that school is out.......what happens? We have a bit of break for a couple of weeks and then David will have a month of ESY.....extended school year. It will only be for about 12 hours per week but it will be enough to keep a bit of  a school routine going. He will also continue his PT weekly at Heartsprings and once the pool is open, he will be having daily pool therapy.

I also hope to throw in a lot of bike riding as he has mastered his bike/trike and thoroughly loves riding it. I hoping there will also be park outings as well as time spent at the zoo and some other fun local places. And finally....I am checking out HIPPO therapy (horseback riding therapy) as that is something I think he would love to do again and would benefit from immensly.

So as you can see, I am hoping for a relaxed and yet full, summer. We all need it as next year he will be a full fledged, mostly full time high school student and we need to be rested up and ready.

It's the last day. As of tomorrow...our schedule changes to no real schedule and weather might just see us turning up just about anywhere.

Happy Summer!