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 REFRACTORY
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.”
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