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 again....it 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 mother...to 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.

Sincerely,

David's Mom

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!

#savedavidshome
#fightfordavid

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 on....it 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 lelam3@sbcglobal.net 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.

Sincerely,

Lisa Elam
aka David's Mom