Get OVER it........

Yes I had a pity party the other night but I'm OVER it.

I was actually over it the night of the concert. When Zan got in the vehicle, he knew I had been crying so he reached over, hugged me and said "Moma I love you". After that nothing else mattered. Next time I get upset, I have to remember to put myself on a Facebook, Twitter, iPhone and now blogger "timeout".

Everyday is hard, challenging and filled with lots of guilt. Trying to find the balance between being a mom to a special needs child and a mom to a normal child is very overwhelming and without a support system, its almost IMPOSSIBLE to balance. I've always been able to do everything by myself and that's just something you can't do alone, no matter how hard you try. That is the hardest part of it all. When I was younger, I always said "I am going to be able to support myself on my own before I get married or have kids." Of course, mine turned out to be the latter, but I never knew how TRUE my words actually were. Isolation is the second hardest part of this journey.

Zan understands the difference between not wanting to be there and trying to be there. It makes me feel better knowing he understands but not any less guilty. It just breaks my heart. He knows I'm doing everything I can possible. Autism or special needs does not effect just the child, it effects the whole family. We can't do a lot of activities that most people can but we find a million more that we can do. I would love to go visit with my family and friends but with Haygen, going visiting is almost non-existent. Its not that we don't want to be around others, its just very hard and stressful. Some people don't quite understand that part and they never will, while others are wishing that they could do more. As I'm sitting here writing this, I'm pretty sure I just blocked a hotwheels car from hitting me in the face. LOL (Parents of autistic children or special needs children understand what I'm saying) You never know what's going to go flying through the house but whatever it is you better learn to duck or block, or both. That's probably why we don't have company either, you never know what to expect. Everyday is an ADVENTURE here at The Crazy House. 

As I've said before, we find humor in everything and that's a MUST. It's very easy to sink down to the lowest of the lows if you don't stay positive or find humor in everything. In your darkest time, you can find a million positive things, if you're looking for them. I am with my boys 24/7. Some days me and Zan will look at each other and say "We LOVE our crazy life" and we do. We wouldn't trade a thing about it because its the little things that are most important. When I am at work, that is the only "me" time or "free" time that I have, I even spend my lunch hour (yes, I take a very late lunch) picking the boys up from school. I can count on one hand how many times that I've been away from them this year without being at work. One day was October 4, I went to see Bret Michaels, then October 18, I went and seen Bon Jovi and November 23, I was able to carry my ZanMan to an Arkansas Razorback football game without Haygen and that's it. The rest of the days, whatever I do, the boys are with me. Therefore, I AM THEIR VOICE.

I get KNOCKED down........

Tonight was gonna be a special night, Zan was singing with his choir. I was looking SO forward to listening to him sing.

Let me back up until yesterday morning, I found out that Zan had a choir concert and realized we had to go shopping. So after work the 3 of us head out to the stores. Zan needed new everything cause he had outgrown all of is "dress" clothes. He tried on a lot of stuff but we had fun of course even got pics to prove it.

BAHAHA look at Haygen in the mirror :)

We decided on those khaki's plus the red shirt. Then all we needed was a belt and shoes then he would be set. Zan was so excited. 

So after work, I rush home got the boys dressed and we were out the door again. We get to the concert (yes a little late) people were already parked by the door and we had to park behind the building and that's cool. We get out and I get Haygen's wheelchair, put him in it and now we are going to the front door where we are suppose to enter. I didn't see any sidewalks or anywhere to push the wheelchair except through the grass and I had asked several people who were also walking and to my surprise there was no answers. I eventually found a sidewalk but when I get to the door there are 3 steps to go up. I was at a loss. So I turned Haygen's wheelchair around and proceeded to pull it up the steps while people were watching including one man. Not once did anyone offer help, not once. 

I was kind of tired by the time I actually walked through the door but it wasn't no big deal in fact, I wouldn't know how to feel if it were as simple as jumping in a vehicle and getting there. The room was very quiet and of course Mr Haygen was screaming and jumping up and down in his wheelchair so what does everyone do, turn and STARE. This probably wouldn't have bothered me if I wasn't so tired. I then push Haygen outside for a second to get him to quieten down a little bit and he did. We get back inside, Haygen gets louder. Of course this time, I'm bawling and the tears wouldn't stop and me and Haygen ended up in the vehicle before I ever got to hear ONE song that Zan sang with his choir. 

The people staring at us weren't bothering me, it was the way they WERE staring. I don't know why but it does hurt especially when you already feel like an outsider to begin with. Maybe it's because I treat people the way I want to be treated and that's not how the world really works or at least not tonight it didn't. I know for a fact that I would've offered help to someone who was trying to pull a wheelchair up some steps. Most likely 99% of the time that person won't let you help but it's letting them know that you are there for them. 

Right now I am hurt, I'm knocked down. YES I will get back up stronger than I was but the only person truly suffering tonight is Zan. I was not able to watch him sing on his "big" night as he called it. I do not have anyone who will watch Haygen for me so that I can participate in (Non-Haygen) activities. Not even family members who live close and have the time. I thank God everyday for allowing Zan to be the child he is because he does understand that it's really just the 3 of us. And my ZANMAN looked so handsome tonight.

Everyone Has A Story.....

When I was growing up, my mom was a single working mother of 3 and watching her struggle to provide for us made me who I am today. I have always been a very independent person from an early age. During my childhood, I wasn't what you would call a loner but I was kind of shy and didn't fit in. My mom was married to my brother and sister's dad before I was born and I never knew my dad growing up or really had a father figure in my life. (That's a whole different story and possibly a book) In school I had friends and stuff but we moved a lot possibly 2 or more times in one year. It was tough but I always adjusted and met lots of new people and still friends with a lot of them to this day.

I was 15 when I started working trying to help my mom. My brother and sister had married and moved out so it was just me and her. We used to be very close and had a lot of fun but things change. We don't see eye to eye half the time, maybe its because I am a mother now too and don't agree with some of her choices or perhaps its other circumstances, and just maybe its because I'm just like her, stubborn.

On my 18th birthday, I went to a car dealership because I wanted a car, I picked one out that was affordable I wasn't trying to be a cool kid or trying to fit in. I just wanted a car. I needed a loan to get the car so I go to a bank and talked to a loan officer. She was so nice, we talked a lot and I was approved for the loan. The insurance wasn't expensive but you didn't have a lot of options of paying for it monthly like you do now, so I went back to the same loan officer and asked for another loan and surprisingly she approved it again, but this time I got a job too. That's how my career in banking started, a simple conversation with a very sweet loan officer.

It wasn't until I started working there that I had self-confidence for the first time in my life and I had worked in the public at a grocery store the years before. I'm not sure what it was about the bank besides the work because its something I truly enjoy and everything about it. The numbers, the counting and helping customers overall and I did and still do take pride in my work. I was there 6 months before I was promoted to Teller Supervisor and my confidence went up even more. I threw everything I had into that job and I loved it but I still wanted one more thing and that was a bachelor's degree, so I enrolled in the night classes at the university. You actually had to drive to the university for night classes then because online classes wasn't evolved like they are now. On Monday nights, I bowled with a group of ladies from work, Tuesday, Thursday and Friday nights, I went to class. Some semesters, the classes I needed were on Monday night, so I wasn't able to bowl and I sure did miss it, that was an experience all by itself. We had so much fun. I think I was the youngest person working at the bank during that time and I literally grew up there. They took me under their wing and taught me a lot, especially the executive vice president. I went to him all the time when I needed help even with personal issues, he was there. He was also the reason I enrolled in night classes. But one day, him and several others were talking to me and other co-workers and they noticed flowers and balloons on my desk and said "Who's 21? It was my 21st birthday and I had been the teller supervisor for over 2 years then and they were shocked.  They didn't realize I was that young. Everyone just laughed. They also told me they almost didn't hire me because they thought I was too shy and boy were they wrong. LOL

My night classes were growing few and far between and I didn't have many to choose from anymore because I had taken them all and the executive VP had always told me that if I wanted to work at a bank near the university all he had to do was make one phone call. I told him Thank you so much but there was no way I come leave my bank family. I just couldn't and I'm not sure how all this happened but somehow a job was created for me where I could still work full-time but take my classes during the day as well. I went to class from 8-11am and worked from 12-5Pm with 5-6 being my lunch break and at 6pm, I was starting the update and nightly processing. It was pretty cool cause I learned a lot about how banks operated and that's exactly what I wanted to do even after receiving my bachelor's degree. I always knew I wanted to audit banks if not internally, then externally. So essentially they prepared me for the job I have today.

And after a couple of years, with the new job, I eventually had to go the executive VP and ask him if the offer was still available to me to make that phone call.  That was the hardest decision I had ever made. I did not want to leave my bank family but I was in my upper senior level classes and it was tough and there was never enough time left for studying. He told me of course. I put in my 2 weeks notice and I left on a Friday. That Monday, I was doing the same thing I had been doing for years but just with a different group of people. We weren't as close as my other job but they were a great group of people to work with in fact I work with several of them now and LOVE it.

Which brings me to where I am today, I received my Bachelor's of Business Administration in Accounting from the University of Arkansas at Monticello and I moved to another small town and really didn't know anyone here and had no family here until I started my job and all I can say is I'm home now. I found my job basically the same way I did when I started my banking career. I had a nice, simple conversation with a wonderful man. My bank family today, has been through everything with me during this journey and you can't compare that to anything. They've watched me struggle and helped me through it. They've watched me fall to pieces and helped me back up and I'm not sure they will ever know exactly how they have helped and continue to help me through this journey. They are supportive and understanding of Haygen and believe me you don't find that just anywhere. Family does not have to be blood at all. I have a huge family and they aren't just a "bank" family. They ARE my family.

Just The 3 Of Us

When I say "we" or "us", I'm referring to Zan, Haygen and myself, it's always just the 3 of us. This includes the past posts as well as the future ones.

Being a mom takes a lot of hard work, being a single working mom is tough, being a single working mom to one very active sports player and one special needs child is challenging. You are pulled from every direction. You are the working mom during the day, the fun, crazy sports mom after work plus the therapist, nurse and caregiver in between all of that. There are days and nights that I cry myself to sleep, maybe from exhaustion or feeling like I've not done enough or perhaps just from guilt.  I feel absolutely guilty some days because I feel that Zan is missing out on lots of things during childhood. We used to be able to go to movies from time to time but now just leaving the house some days is an absolute nightmare.

Zan is the most loving, caring child I know with the biggest heart. He has amazed me through all of this probably more than Haygen. The way he interacts with Haygen is something you can't teach or show a child, it just comes natural. He did play every sport that the YMCA offered for a year or two, but I finally said "Baby, can you pick one sport that you love to play and just play that one?" I felt like a horrible mother asking him that but I had too. I was a complete train wreck.  He said "sure Moma" and he chose baseball. He has played every year since he was 5 and he will soon be 12, so you better believe that when baseball season is near it is his choice whether he plays or not and once he signs up, he has to finish the season because quitting is NOT an option. He is no Chipper Jones but to me he is better than Chipper. He plays with his heart and soul and baseball is the one thing that is "normal" in his childhood. I have missed a few practices and ballgames but not very many. Some of them, I'm there but me and Haygen are watching from the vehicle not because I don't want to get out, its just easier. In the parked vehicle (with the music on) in unfamiliar places is actually calming for Haygen, its sort of like a security place like home is to him. When he has a "meltdown" it could be 5 minutes or 2 hours or longer and its something we try to avoid especially in public. It's very easy for people looking in from the outside to say "All that child needs is discipline" and that used to bother me A LOT!!! But watching a child have a "meltdown" looks a lot like a spoiled little kid just having a tantrum. Seriously, some kids you would never know that they are autistic or a child with special needs just by looking. I will never forget the first day someone made me cry at Wal-Mart, we were looking at air filters of course Haygen was screaming, me and Zan were going on about our business because Haygen screaming is normal to us. This man stopped and said "Can you not control your child?"  this day I was very exhausted and Haygen could not sit up on his own then, he was sitting in the seat of the buggy and I was holding him up by having my arms under his and pushing the buggy by holding the back of the seat. Needless to say we didn't get any air filters. I picked Haygen up out of the buggy got Zan's hand and we left Wal-Mart. The saying "Don't judge others because you have no idea of the path they have been on or the path they are traveling" It's very TRUE.

Describing a meltdown is like a "System Overload" on your computer, say for instance you do things the same way everyday but one day you take a different route to work and all that new information (scenery, sounds etc) is coming back to you so fast that you can't slow it down long enough to process it, so your "computer" shuts down or crashes!!! That's how it feels to Haygen. His brain is the computer and all the information (sounds, smells, textures or just life itself) goes to his brain so fast that he doesn't know what to do with it. The "meltdowns" are his way of saying "STOP" and he needs all the new information given to him slowly and not all at once. Some meltdowns can be violate and some can be just screaming you never know.  I remember giving him a bath awhile back and as soon as I put him in the bathtub he started clawing me trying to get out of the water until eventually he pulled me into the bathtub with him. YES, he's that strong and I think he broke my thumb that day too. Haygen doesn't mean to be violate but things we don't even notice or pay attention to in our daily lives are scary for him. I had no idea what was happening or going on. I didn't know if it was the smell of the soap, the temperature of the water I just didn't know. Eventually, I realized the water was running that day I put him in the bathtub and now the water is ran before I even take him near the bathroom. He loves his baths and don't want to get out most of the time now. Everyday is a learning process not just for Haygen but for me and Zan as well.

This whole journey has changed our lives. We see the world differently. We don't live from day to day, we live from minute to minute. To us tomorrow is the "UNKNOWN" and we face it as it comes. We find humor in everything, we have a lot of fun. We focus on the POSITIVES and not on what we CAN"T do because you will definitely drown in this world if you don't focus on the positive things. People used to ask me "How can you be so happy all the time?" It's not easy by no means but I look at it this way "We didn't choose this life, it was GIVEN to us" so that makes it more special. Not only am I a better mother now, I am a better person over all. I make mistakes everyday but the key is to learn from them. I have found strength that I never knew existed. Patience. Ahh, I never knew someone could have this much patience. Out of all the learning though, I learn the most from my boys and at the end of the day, I realize we don't want to be "normal" because we have enough love, affection and are closer than probably most "normal" families.

Our New Beginning........

When we left Memphis, we left with good news about the test but we were still clueless as to what happened to the normal healthy active little Haygen. It was frustrating but on the other hand it was a relief because all the big tests were normal. We also starting weaning Haygen off the seizure meds and got the feeding tube. (I no longer had to put it through his nose anymore YAY) Since the surgery, when he pulls it out now, I have to put a new "micky" button in the hole in his little stomach and then fill the balloon up with water. NOT FUN but definitely better than the nose.

It had been a few weeks since we started lowering the dosages of his meds and something was different about him. I started noticing his seizures were lowering and he looked SO alert it was like WOW. One day I realized, Oh My Goodness he had had NO SEIZURES. There has never been a day without seizures since he started seizing in February 2008. I'm pretty sure my whole neighborhood heard me that day :) Watching your child or loved one seize non stop on a daily basis takes a tremendous toll on you especially cause there's nothing you can do but hold them, comfort them and love them. Haygen has been seizure free ever since that day.

Then one day I'm almost positive it was August 28, 2010, Haygen's nurse from his school called my office and asked me "Guess who just walked in my office by their self?" and I responded "I have no idea" me and his nurse talked a lot so this wasn't unusual for us. And she said "HAYGEN" yea I think I fell out of my chair pretty sure I did. Haygen walking into her office never crossed my mind because he wasn't showing any signs of really trying to walk. He was crawling some but not pulling up a lot where you would think he was trying too anyway. I was completely shocked. Crying, laughing, thanking God and everything and everyone. So after work this is what I saw..........I didn't know whether to laugh, cry or what cause he still amazes me. :) This was the VERY first time I seen him walk. I went in the school with the video on :)

 

 

Haygen never slowed down either. He was soon running and jumping and to this day in December 2013, he still out runs me. He's a fast little thing too. When we went back to Memphis for our follow-up, the neurologist said 5 words to me MAYBE. He sat there for an hour and half just watching Haygen, he was amazed. He was watching him play, walk, jump, and throw toys. He said "I don't know why he's getting better." I just turned to him and said "I do and its PRAYERS, Lots of answered prayers!!" We have seen some of the best doctors there is and I'm here to tell you God is the "REAL" doctor. Two of the most amazing children's hospitals said he would never walk again. They did all the tests and there was all different types of doctor at each hospitals PLUS the tests were sent to most of the states around the US. There was nothing in the tests indicating he would ever be able too.

Those same 2 children's hospitals also said he wouldn't be able to see again and the neurologist did say at the follow-up appointment in Memphis that Haygen could see something but wasn't sure what or how much he was seeing. Totally different from the blind diagnosis and saying that he can't tell if the light is on or off. I had also forgot to mention that a friend of mine's daughter was having seizures and she had tubes put in her ears and her seizures stopped. I had never heard anything connecting tubes with seizures but I mentioned it to the doctors in Memphis the week we were there and they said that yes sometimes it does help because it takes pressure off of the brain and given Haygen's history with ear infections they also scheduled the appointment at ACH for that as well. We have and will try anything to see if it helps.

So with all this going on there's no way to say that the tubes in his ears stopped his seizures, or getting him completely off all medicine or just getting the feeding tube was the reason he was getting better other than GOD IS IN CONTROL. You just have to give it ALL to him.

Even in darkness, there's ALWAYS........HOPE

"If you've never been through anything, you can't help anyone."  That quote is the reason for my blog, I hope I can help at least one person through this and let them know they are not alone. Even in the darkest hour there is always HOPE!! NEVER GIVE UP!!!

MEMPHIS........Finally

While waiting for April 2010, we were still in and out ER's, doctors offices and ACH. I still love ACH and it's an amazing hospital. I just didn't like Dr House Wannabe :)  When we got to Memphis, I met the neurologist who was in charge of Haygen's study, then after the next 20 doctors I lost count. I just knew they were all meeting at St Jude's at the end of the week to discuss Haygen.

(This was him at ACH before we went to Memphis)(That was the 1st time, I had heard him laugh since February 2008)

They began hooking Haygen up to the video EEG as soon as we arrived in Memphis. A few hours later the neurologist came in and said "I'm not sure exactly what's happening with him but I do know he does not have LGS!!" He said everything Haygen is going through mimics LGS EXCEPT Haygen was continually to decline or regress.  Which he explained that most of the time, children with LGS regress and then stay at level but Haygen keeps regressing.  By the time we got to Memphis, Haygen could not walk, talk, see, lost all of his facial expressions, could not swallow, could not hold his bottle, could not sit up and the list just keeps going. So all week were more tests, genetic testing, missing chromosome's etc etc and of course everything was returning normal except ONE test and that was the big one. Those results were not in and they said the results should be back before the end of the week.

The test was for Rett's (Haygen was 3 at this time) so during this week, they were preparing me for the positive results of the test.  In other words, Haygen would not make it past 4 years old. He was that bad :( That was the longest week of my life and during this week I lost my baby cousin Tanner. He was 17 years old and died in an auto accident.  I was devastated. There was lots of praying, soul searching, you name it and it was done. I was so afraid I wouldn't make it to Natchitoches, LA to tell him goodbye.

It was very late Friday night and the Doctor came to tell me the results of the test were in..........Haygen did NOT have Rett's!! WHAT A MIRACLE!!!! But it was puzzling Doctors because he had been tested for EVERYTHING!! Memphis confirmed ACH and said he would never walk again or see again. They were at a loss as well.  The doctor knew about my cousin and he released us that night and we drove all night stopping just to change clothes then driving on to Natchitoches, LA and got there just in time for Tanner's viewing and funeral. That made me feel better too, just knowing I could say goodbye.

Before releasing us, he said he wanted to try Haygen on a different combination of meds (which I was happy about because that was my main goal to give him a better quality of life) but we first had to wean him off the meds he was on. That process wasn't bad in fact, turned out to be THE BEST THING EVER!!! :) And he called ACH and scheduled surgery for a feeding tube.  They were going to keep us until the following week when someone was available to do the surgery there but he decided against it because he knew we wouldn't make it to my baby cousin's funeral. So during that time after we left until the surgery we had to use the feeding tube through the nose and that was NO FUN!! When Haygen pulled it out, guess who had to re do it?? Yep ME :( When you're a mom or parent to a special needs child you realize you've got Super Powers real fast.

ACH taught me how to insert the feeding tube and this was my 1st time!! :). He wasn't mad at me either :)

They love each other SO much!!! It's a bond that's unbreakable!!!