Monday, April 11, 2011

I Want My Children to Suffer

I was changing Peyton's diaper this morning and Hannah was on the bed making her Hannah noises and constantly asking for "green apple" which I didn't have and may not give her for along time (that's another post). Peyton was looking at Hannah with such attentiveness. She smiles at Hannah all the time. Hannah's her big sis...of course she will look up to her for a time. My first reaction when I see Peyton studying Hannah is to distract Peyton because I don't want her to learn from Hannah. I want to protect Peyton from the pain of being a sibling of a child that can sometimes be out of control, the pain that I know Abigail feels when Hannah won't play with her or the pain that Garrett feels when he is trying to tell me a story in the car but is constantly interrupted by screaming or when he has to endure mine and Steven's depression but not fully know why we are so burdened. Let's face it, when one child is "lost", we as parents are like the shepherd who leaves the 99 and goes to rescue the lost one. Even when I am engaging with the other children, I grieve for Hannah. But I do sense the Holy Spirit's speaking to my heart, "I have perfectly orchestrated the makeup of your family and I have a purpose for Garrett, Abigail, and Peyton as well" I believe that God in His perfect wisdom really does work all things for the good of those who love Him and are called according to His purpose. I believe that our primary purpose really is to glorify God and enjoy him forever. My human heart wants to protect my children from every conceivable evil in the world. The heart that God has given me wants my children to suffer so that they may know Him. Suffering bring about compassion not pity, graciousness not mere tolerance, patience, humility, . If they don't suffer, will they need Him? Suffering brings out things that are already in our hearts but we might not know it...things like anger, pride, self-reliance (yes, self-reliance can be a bad thing sometimes...that's another post too!). Hannah's autism has debilitated us as parents at times...well, I shouldn't say Hannah's's really our inability as humans to be everything that we "should" be for all of our children. Our heavenly Father in His infinite wisdom knows our frame. He is pruning and shaping our children, our family, our friends into what He wants us to be. We can trust Him. If not for my belief that God is sovereign over everything and that He didn't just create us and leave us alone, then I would not be able to press on through the hard days...through the days when I want to look at everything that is wrong in the world...everything that is wrong in Hannah's world. I will forever press this into my children's can endure anything because of Him, the one who has every hair on our heads numbered...the one who directs the hearts of kings...the one who tell the sun when to rise .

Sunday, April 10, 2011

Spring Break at Papa and Grammy's House

Hung with Papa and Grammy last week because it was spring break in GA. They are such great help and nice company for me. Even if they can't help at the moment, just knowing that they are there is nice. Papa takes up Abby's time however he can. They have started some vegetation in the back yard...not sure what yet. He takes her to the store and little errands that he has to run. Hannah is doing well this week. She is alot like a normal 8-year-old in that she asks to go somewhere constantly..."go to zoo", "swim", "trampoline", "ride zebra" (ride the carousel), "Kirsten, ride Zebra" (this means she wants to go to the zoo with Kirsten and ride the carousel). This is nothing new, but she does seem to be taking "no" a little better so I'm trying to use it a little more rather than always redirect or distract her attention. Children with right-brain difficiencies obsess about things and overreact to conditions that a typical child would get over much easier. Speaking of overreacting, we have decided to get Abby evaluated by BB here in PTC. We believe that she is either learning from Hannah or actually has a mild right-brain defficiecy herself. She is manic at times, charming one minute and the tazmanian devil the next. Furthermore, we have seen some improvement in her behavior specifically her hyperactivity since we started Hannah on the program. Abby is taking some of the supplements Hannah is taking as well as doing some of the exercises and very limited "screen time".

Tuesday, we went to Guntersville to an indoor pool. There was no one there for a while and it was nice. I wish I didn't feel like that. Even Hannah loves it when more people show up, but all I can think about it what she is going to do to them. It wasn't long before three girls around her age came to the pool. They were staring at her and whispering to one another. Years ago, I would have went over and explained to them her condition and so on. I just don't always feel the need to do that anymore. They weren't mean girls but I could tell that they just didn't understand why Hannah kept splashing them and making her awkward noises and just splashing water out of the pool for no apparent reason. My heart hurt a little for Hannah because I knew she wanted to play with them but she just didn't know what to do. She didn't push it and just went off to herself and did her thing. I believe one day that she will have friends.

Here is a few pics documenting part of our week at Grammy and Papa's house:

Hannah wanted to "ride zebra" "ride elephant" so Mom and I took her to the Gadsden Mall because they have a carousel. I paid the attendant $5 because I thought she might want to ride it a few times. She rode it once and apparently was not impressed because after the ride was over she got off and exited the perimeter...or maybe she was impressed but thought it more important that the two ladies having Chic-fi-la needed some help eating their food. Being in public causes some stress due to Hannah's social non-boundaries, but although I have a ways to go, I am becoming more relaxed in part due to lots of practice and the graciousness of others. The lady in the bathroom at Wild Animal Safari is few and far between. Most people are very sweet to Hannah and often look at me with admiration more than pity. Occasionally, I'll get the "look away" when she is having a tantrum or the "why don't you do something about your child's behavior" look but I understand that. I understand that people cannot know everything about every ailment known to man. Furthermore, the autistic spectrum is so varied in degrees that even someone else who has a child on the spectrum might not even understand particularly what Hannah's day might look like. I am not hurt by people's ignorance anymore...besides, I'm ignorant about a lot of diseases and ailments as well. Hannah's condition has given me the gift of being in a position to love other's misfit children because I don't have to get beyond their idiosyncrosies, quirks, or annoyances.

This picture is of Papa and Grammy (Mom and Dad) on Papa's 67th birthday that we celebrated last week. He was born on April 4th, 1944, that's 4-4-44 (just a little trivia). I love this picture of them because most of the pictures that I have of Mom and Dad are such: Dad is looking away from the camera (he hates posed pictures) and Mom's mouth is always open (she likes to talk). They have been married for 44 years. They are still in love and they are best friends. They are givers. Currently, I and my children are takers. Particularly, we take from them emotionally, but they love us still. They celebrate every minor Hannah victory with us and they feel every down as well. They are patient with Abigail through her difficult age and over-reactions and constant babbling. They are gracious with me when I say things I shouldn't say to blow off steam. To use a phrase that has been used many times but is so applicable, they are like fine wine...they truly get better with age. We are so blessed to have them in our lives. I hope you had a happy birthday, Dad, even though it was in the dark (the power went out) and you didn't get to watch the NCAA final game.

This is Peyton while I was getting my "do did" as they call it down here. We were at a beauty school so they take quite a bit longer to style my hair but cost much less. Peyton's a dream baby...smiles all the time, so content as long as she can look at me and suck her thumb. Everyone raved at how good she was and she and I even got to startle an elderly man next to us when she popped out from beneath my poncho after nursing...hey, the kid's gotta eat!

This is a picture of a seatbelt...a seatbelt that had to be cut in order to get a child out of it. Hannah has more tantrums in the car than anywhere else. I can't make a u-turn or go anywhere that she thinks I shouldn't go without her screaming and yelling and kicking the window, etc. in the back seat. This particular day, we met some friends at a sensory gym and then had pizza. As soon as she was done eating half of the pizza that we ordered for the kids, she says "french fries". So, on the way home when I didn't stop and get french fries she has a fit like none other. It is these times when I ask myself why I love her so much! I was furious...she was furious...Abby was acting out because she was sick of it and Peyton was just sucking her thumb as usual. So I went upstairs to the apartment with Abby and Peyton and left Hannah in the car to finish her fit. Usually, she comes right up but this time she didn't. I went back down to the car and lo and behold she was stuck in the was unbuckled but twisted around her waist and around her leg. I got her leg out but I could not loosen the seatbelt enough to get her out. So I cut it.

This is a picture of the side of Abby's head. Hannah tried to pinch her nose and was too rough. We have banned Hannah from nose-pinching but she still tries to get one in every now and then... Here she is getting Peyton when I was trying to take a picture of Dad with the monkeys:

This is Hannah walking Suzy.

Overall, the week was a break for me. We didn't do as much BB exercises as we usually do but I needed the refreshment because I have a renewed spirit and desire to press on. My perspective is renewed and I know that God has given Hannah to us and to no one else and I am thankful for her. I am thankful for all the wonderful relationships that are deeper because of her...all the amazing people that we have met along the way because of her. I am thankful that I know more intimately and more intensely my Father's love and graciousness and mercy toward us because of Hannah.

Still really missing Steven this week.

Saturday, April 2, 2011

The Israelites and Me

I met a nice family today...a family that walked into the BB center with their two children. These children very clearly (to me anyway) had Functional Disconnection Syndrome (FDS), a term used by Dr. Melilo, the founder of BB. I looked into the mother's eyes and saw so much pain. I understood her burden. She was holding on and guiding her children through each door. I knew why. They were either "runners" or she was protecting their dignity or both. When I saw them come in, my light shoulders that I have been given the past few months turned heavy, the same heavy I've felt for years; the heavy that feels like you're only taking enough oxygen in to merely live. I felt her pain. I felt her longing for hope, but also wondering if this program would really help her kids or was it just like everything else that makes its way around the autism community. I hope that I will always feel this heavy when I meet someone that is going through trials. I hope that whether or not Hannah comes to life through BB that I can be a catalyst for hope. If she gets better, then I will perhaps annoyingly so, shout from the rooftops sharing the means that God used to heal her. If she does not get better, I will still have enough joy in my heart to help others see help others bear their burdens with courage and hope as well.

I personally had an off week this week. I so soon forgot what the Lord has already done for us. I forgot that miracles (atleast in my mind) have already taken place. The couple mentioned above asked me about Hannah's progress and honestly, I couldn't even at the time name 3 things that she was doing better. I simply forgot! She is doing amazingly well but I couldn't communicate it right away. I have been griping to myself all week and wondering when the next WOW moment was going to be that I couldn't even be thankful for what has already happened. You all know the story...God saves the Israelites from the Egyptians by parting the Red Sea to let them cross and then drowning the Egyptians. Soon after the griping started. We are all disgusted and probably even a little judgmental toward Israel when we hear that story. "I really don't think I would complain so soon after God did such an amazing thing for me", we say. Well, I'm guilty.

All that said, Hannah is still doing well. Three times since that first time, she has told me spontaneously that she loves me. She is taking all her supplements except for one and we are adding that on Saturday. She is so relaxed with her primitive reflex exercises. She left the eye-patch on for 55 minutes straight one day. She is doing other hard things with a great attitude. She put one of Peyton's headbands on and was primping in the mirror by tilting her head and rubbing her hair with her hands. I told her how beautiful she was and she just smiled.