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Friday, January 4, 2013

It's Not Really "About the Backpack!"

This really amazing thing happened. This Back Pack that I so wanted Abigail to have was purchased through the generous offer of Scott Stratten, President of Un-Marketing. He is an expert in Viral, Social, and Authentic Marketing which he calls Un-Marketing. Author of The Book of Business Awesome / The Book of Business UnAwesome. I saw a friend post about it and figured this could be fun. I had always wanted to do an Amazon wish list anyway. SO the children and I had a wonderful time creating this awesome Wish List! We posted the link on the Unmarketing facebook page as requested like the other hundreds of people. I never gave any information about our circumstances, just a simple link saying how much fun it was creating the list. The list has become in our home a target for dreams, we all have dreams don't we? I highly recommend you go ahead and go over to Amazon and create your own wish list. This is so much fun for the whole family and has brought us countless hours of wishing. Anyway, when the highly treasured Dora backpack arrived I was surprised. I had forgotten all about the link I posted. I mean that list if jam packed with wishes, how could anyone of known that Abigail (2) wanted that Backpack more than anything? It took me days to figure out this mystery. Last night, I went on Amazon looking for the hard to find Merrill Readers that Brynn does best with. Now I am not talking about the new fancy ones, no the ones that Brynnon does best with are the old ones, MERRILL LINGUISTIC READERS, A BASIC PROGRAM
and they are from 1966 of course! I have spent a lot of money on the new ones, believe me I wish he did as well with them! So, of course when I was discouraged at the availability of them... and the fact that no one has a complete set of these... I moved on to have some fun! To the Wish List! We added all sorts of fun things... Then I decided to separate the list that had grown to a few pages. Well, there it was... THE BACKPACK.... Oh my heart was racing! Could it really be that someone we do not even know purchased that Backpack? I finally saw the tab that allows you see "purchased" items from your Wish List. Sure enough when I did that, someone had indeed purchased that Backpack from Amazon, from my wish list! How amazing is that? It's more than a Backpack... it's my renewed confidence in mankind. It erased so much negativity, so much disappointment in people in general. As terrible as this sounds, I had really lost the ability to believe that people do good, without getting something in return. I am sure that it began long ago, but it was actually year before last around the holidays that I started really feeling strongly negative about giving. It was in a group setting, where iPads were being given to "Needy" families with children with Special Needs. The goal was to get to know people and pick them to nominate them to receive one. It was through this experience that I realized I was not "normal." I became facebook friends with the person I chose. Her Daughter had Autism and she was new to the group, so sympathy played a part in that decision. It was not long after that decision that I realized the extent of greed. She did not get chosen, but it wasn't about that. It started with a photo of a gaming chair that she posted a photo of, that she had purchased for her husband. I couldn't help but think to myself, dang that must be about half maybe more of an iPad right there. The pictures continued to show up games, a new game system, tons of toys... and it happened, I was then a full fledged negative person about giving. I could not for the life of me see how anyone could in good conscience go to a group like that, claiming they were in need of and could not afford an iPad with priorities like that? I mean what is important, can the average person not tell the basic human difference in NEED and WANT?
 Perhaps it was my opinion that Christmas is a horrible holiday, packed with pagan roots and the terrible displeasure of people wanting to buy to get that started this downward spiral. All my life I had heard people say, we have to buy for so and so because they will buy for us. It has become a game of who can buy the most gifts to get the most back, disgusting to say the least. I had even had someone invite me to Christmas dinner and add that they needed to know if we would be coming, because they wre only buying for my children of we were going to be there. Seriously, was that supposed to make me show up?
I was at my wits end after hearing so and so didn't buy me anything and I bought them such and such. I had watched this private group get all these gifts for a very needy little girl for her fist Christmas with a new family. What a wonderful thing right? Yeah, it was... Until it turns out that the gifts were for the woman who claimed to be helping a family in need. Ugh... how terrible is that? Apparently, this whole internet thing is FULL of people that are trying to scam people out of FREE STUFF. As the Father would have it, I cannot be as negative about all this now. That backpack has restored in me a new breath of fresh air about giving and receiving. The person who purchased that backpack may never know that Backpack was one of two new gifts that Abigail received for the Holidays, and it was the only gift that anyone besides her Sister and I bought her. She was blessed beyond measure by getting this totally awesome Dora Talking House with the people and furniture previously loved by another child. Her Sister (22) sent her a wonderful Princess Piano! Brynn and Brett got 4 airsoft BB Guns each with 6,000 plastic BB's and Brandon got a used T-shirt lot from ebay and a Foo Fighters Guitar Tab. Their Sister sent all the boys a pair of headphones. This is what we see as normal. When the older children were young times were better and we could afford to buy a  few gifts each for the children. It has been several years since we have been able to do anything like that. We celebrate Hanukkah every year. In 2005 we celebrated both and let the children decide which they would rather celebrate and Hanukkah won, so we have ever since. I hope one year to be able to buy everyone a gift for each of the eight nights. This year, the boys offered to let me spend what we had to spend on Abigail, I just couldn't not get them anything. They had a blast with those BB guns, and it turns out that if your buying cheap plastic BB guns 6,000 BB's is about all you need! The positive thing about doing things this way is, my children can tell you exactly what they got for Haunkkah this year! :) Not too many children can do that! So, with this new giving receiving attitude, I went to Amazon and entered people's names from my facebook friends list. I bought something from one of their list, just a small item and didn't really affect my bank balance. Won't they be surprised? I so love the idea of giving in secret that I have decided to randomly do this when I have an extra few dollars. I think it is a good thing for the children to take part in and we will make a tradition out of it.
“So when you give to the needy, do not announce it with trumpets, as the hypocrites do in the synagogues and on the streets, to be honored by men. I tell you the truth, they have received their reward in full. But when you give to the needy, do not let your left hand know what your right hand is doing, so that your giving may be in secret. Then your Father, who sees what is done in secret, will reward you." Matthew 6:2-4

Tuesday, January 1, 2013

End of the year wrap up!

I have thought a lot this past week about how much we have been through this year. Some good and some not good... So let's begin with a recent good thing... A few weeks ago I got a phone call. It was a fellow Mom who I met through craigslist (of all places) about 3 years ago while expecting Abigail. I bought a swing from her. She gave me in addition to the swing bath towels, some clothes, a bouncer seat, cloth diapers, burp cloths, toys... It was a greater blessing than she could have ever realized. I was on that very day we met going for my 2nd mammogram while pregnant. I had something behind the nipple that could have been cancerous. My symptoms started soon after finding out I was pregnant. We had health insurance, but as most of you know that doesn't mean free health care. Thank Abba Father, I convinced them to wait it out and when I returned a few months later for the 3rd Mammogram it was GONE! We were overwhelmed with the medical cost, the addition of a 6th child when we were struggling with the 5 we already had. A cancer scare on top of that was just really stressful. So, needless to say this gal was a real blessing. I added her on facebook and eventually we were sharing there and over the phone. So, she calls a few nights ago and says that she wants to ask  a question. She proceeds to say, I want to do something for your family... one time, within reason, whatever your family needs most. Well, that is a question that I have never been asked. I was perplexed... I mean this is a one time thing, what do we need the most. My Husband answered it as quickly as I asked and that's the answer I gave... More than anything else, my children's greatest need is clothing and shoes. More times than not my children's clothing and shoes come from Thrift Stores. There is nothing wrong with living this way, it gets us by... but the clothes that the children have are worn and often not correctly sized. I am not sure if y'all have noticed, but through the years and brands clothing sizes change. To add to the misery of trying to clothe them this way, Brett and Brynn are "oddly" shaped and it is hard to find clothes to fit them, much less in a thrift store with only so much to choose from! My children do not get "gifts" very often from people for Holidays, much less just because. The younger four have never know the kind of Holiday gifts that the older two had. Money does not stretch like it use to and there is only so much to go around. We do try to treat them to special "gifts" when our income tax refund comes in. It's about the only time we have extra money to buy a toy, bike or a wanted item that we normally couldn't afford. We also budget carefully for the higher priced items and save accordingly. This is how we acquired Brynn's iPad, the other boys iPods and the big items we do have. We were responsible with the money from the sale of the property a few months ago and did not spend any of it frivolously, besides getting Pizza and Brynn's much desired Chili's meal :). Sadly, we did just move away from our much loved Neighbor (Jackie) who did so much for the children, she was more like a  Grandmother to them than anything they have ever known. She kept Abigail looking beautiful :) and would often buy for Brynn and even Brett. When she knew we could not afford to buy Brynn clothes and he gained so much weight with the Depakene one year to the next for Med Camp, it was Jackie who blessed Brynn with new jeans for Camp. I don't think he will ever wear another brand! Before she came into our lives, my children didn't know about receiving things from anyone but us, with the exception of a rare relative or friend here and there. I guess that is what my Momma would have done all these years or she could have gone with me to the thrift stores! I am sure if she would have still been alive I would not have strayed as far from my family and them from us as we all have. I see that in a lot of families now, I suppose it's not like it use to be for anyone anymore. Perhaps technology and the business of the world has hampered and destroyed good ole family values. Long gone are the Family bar-b-Que's of long ago, where family gathered and shared their lives, their children and their food. I tell you what, I would give anything to go back and redo the past with my family. It's so sad that one person missing from the bunch can cause such discord and separation. I will be looking forward to the children experiencing a "Pay It Forward" experience. I am sure it will be a life changing experience for them that they will cherish always. Someone that has never even laid eyes on them, other than in pictures, wants to provide them clothes... How awesome is that? In thinking about that question, it raised a lot of interesting thoughts between a "Need" and a "Want." There are lots of things that anyone would want! If I presented that question to the children Brynn would likely say a 3 wheeled motorized bike, Brett would likely say a new home computer to play games on... Brandon would likely say he doesn't know, but secretly he would want itunes or xbox stuff. My boys all know well about giving. They also know the difference between needs and wants. Brynn and Brett earn $5 a week for being good family members. This includes everything they do for cleanliness, personal hygiene, home school and helping others. Each day they fail to meet their responsibilities in any way they loose $1. This is how life works after all. It is interesting to see what they do with their own money. Brynn will often buy things from Brett. Brett will save his money, all of it... and only wants to buy memberships in "Animal Jam." There are a few things that our family needs, perhaps with the help in clothing we will be able to work on some, like dental as Brett, Brian and I all need to have some teeth pulled!      
Just when things were getting somewhat "Normal" and oddly cozy back in MS... We went back to Children's again to have Brynn's VNS adjusted. We will return in early February to do it again! Praise Abba Father, it was a very easy and productive trip. We are going to wean Depakene, tonight completes our third week!! YAY! I have wanted to try this for some time since he has been maxed out on it for a year now. So far it has been good, only side effect are more myoclonic seizures and cognitive slowing. He has always been refractory and had a "honeymoon" with medications. Once a drug is introduced, he tends to do well on it for a while staying at his "Normal baseline" of 3-4 seizures a week. Then his body gets used to it, his brain figures out a way around the med (whatever the actual cause is) and he begins a steady increase again. Onfi will be his next drug. I have good feelings based on what I have read. Since Brynn has done really well with using Klonopin for Clustering and Ativan for continuous daily clustering, I feel that another benzo may be the answer that will bring long term relief. Hey, it's hope at least... Anything is better than the dreaded "He's never going to be seizure free." I somehow get that, and even accept that now. I remember being so mad that his Neuro even said that. So frustrated that a Dr. could give up... Now I realize that his Dr. never gave up. His point was that in refractory Epilepsy, no medicine is going to stop every seizure. That is what refractory means.
Websters Dictionary Defines

1) : resisting control or authority : stubborn, unmanageable
2) a : resistant to treatment or cure
Reality is, sometimes Epilepsy is just that. "About one-third of people with epilepsy will eventually develop refractory epilepsy. This means that medicines don't work well, or at all, to control the seizures.",5/
So, the reality it seems, is that indeed Brynn "may" never be seizure free. A miracle could happen at any moment and he could never have another seizure too. All we can do is try to alternate his medications to keep him at his baseline or better. Only Abba Father knows when he will stop seizing, I am okay with that now. I have faith that his life is in Gods hands, and I have security knowing I have done everything I can do for him. So, onward we go... into the New year 2013 may be our year. Starting over again, at least this time we are back in Mississippi. It feels peaceful here in Mississippi. There is a tranquilness in the air that touches your spirit, your heart and your mind like no other here. Things are in progress to move forward into our lives with great anticipation of a future yet to be seen and realized. I just pray that this time Abba Father will see fit to bless us with the stability and perhaps eventually, a forever home to call our own, somehow... someway... It is will great gratitude that I wake up each day here back where I feel at home. I have taken the Father's hand in a mission to go forward in dealing with the past and finding my happy place again. So I end this by saying "Happy New Year" to all of you who follow... May 2013 be the year for Truth, Justice and Healing for all! Don't forget to keep the faith and never ever take your eyes off the mark... ~Denise