Friday, April 30, 2010

My Theology Will Not Prevent My Pain

This blog is going to reflect some of my heartfelt emotions, my anger, my despair, Hannah's triumphs, my joy, and of the blessings that I believe God will and has bestowed on our family. I was trying to express to well-meaning someone today our daily struggle and how it's an up and down battle. She said, well that's where your theology comes in. My belief that God is sovereign over and cares about every minute detail of this universe including my daily life comforts me immensely. My all-knowing, all-powerful, ever-present heavenly Father is in control and can and will do as He pleases for our good and His glory. Of course that comforts me. However, I am human. Furthermore, if my theology does not allow me to love, to feel, to bear my burdens, the burdens of my daughter, and the burdens of others then my theology is bogus. I cannot have a ministry to others if don't weep when they weep, rejoice when they rejoice. Jesus WEPT when he heard of Lazarus's death. Why didn't he just chastise everyone and callously walk over and do what He knew He was going to do, raise Lazarus from the dead? He wept! He felt the pain of losing a loved one. He wept with the ones whom he loved.

Hey, I'm not Jesus, that's for sure. But, isn't the Christian life one of suffering, struggle to do what we want to do but can't or won't, struggle to not do what we don't want to do but also really want to do? And the suffering...should I just callously walk through my day proclaiming God's sovereignty on everything and not allow myself to feel pain when I walk through the store and hear a Mom and daughter having a conversation about the daughter's day at school and her friends? Should I not allow myself to weep because I want that? I long to have that very same "trivial" conversation with my sweet Hannah. I want so bad for Hannah to stop picking her face and causing scars. I want so bad for her to read me a story instead of endlessly coloring shoebox tops. I want her to have friends. I long for this everyday. Do I sin in my longing? Yes and No. Yes, because sometimes I become obsessed with those temporal things. One day Hannah will have a glorified body. I know that. No, because I'm grieving and I don't believe I can be human and not grieve. I will not be one of those people who pretends to have it all together when I don't... you know, those people that you really can't talk to/trust because they don't really understand and their questions and comments are laced with judgment and fixisms (my made-up word) and ungraciousness. "Here Honey, let me fix your problem for you because you just need to be happy ya know"

I better stop before I start ranting... In the meantime, when I am struggling through my daily life with Hannah, I ask for grace from you. I ask that you allow me to struggle through my depression/despair, my sin of not trusting Him, my sin of anger toward Him, my Christian walk in a nutshell. You're not going to agree with everything I write in this blog. In fact, this blog will probably cause some of you to be prideful. If you can't handle the things that I will write, then please simply don't read it. I will not argue theology and I will likely not apologize for anything I write. These are my thoughts, not all of my thoughts because I won't be imprudent, but what I write will reflect what I am thinking or feeling at the moment that I write it.

In conclusion, I believe always that in my despair God is with me. When I fall down, I always get back up because of Him and His work in the body of Christ. I always come to the conclusion that He is good and I know that is only by His grace that I come to that conclusion. These beliefs will never change even if Hannah never gets better. I will always love and follow Christ.

Thursday, April 29, 2010

Overdue Update

It's been more than a week since my last post. Since then I have walked a half-marathon without keeling over, found out I was 2 weeks farther in my pregnancy than I thought, celebrated my 39th and Garrett's 14th birthdays. Oh, this blog is about Hannah.

We weren't able to get the urine test because Hannah's pullup was always full when we tried to get her up. Furthermore, if we woke her up early she wouldn't go back to sleep at all. It just wasn't worth it considering Dr. Tami said that the blood test was the most important. So, Monday is the day for that. Thankfully, I'm not as worried about the blood test. After talking with a lady at LabCorp, I have a peace about it. I also know that people are praying for us. If I weren't going through this trial would I personally experience the love of God's people? That is certainly something to be thankful for.

Sunday, on the plane on the way home from Nashville, I had to fill out an assessment for Hannah's behavioral therapy services. I went into the pit. I had to think in detail as I do every six months about all the many things that she is not capable of doing. I just couldn't handle it. However, my sweet husband picked me up from the airport and took me out to dinner. That was nice and we talked about how I was feeling and the future, etc. The dinner turned out to be a temporary diversion, because for the next couple of days I was so depressed, I had to force myself to do everything that I needed to do including Hannah's exercises. Monday was hard because she did not cooperate at all. Garrett and I had to muscle her through every required movement of every exercise. Monday night was better because Steven was there and he was very positive and able to help me get through them more quickly and efficiently. Tuesday, Garrett pulled Hannah off the couch and she hit her head hard on the floor...that ended that session. Tuesday night, Steven actually got frustrated because Hannah was soooooo uncooperative and he was tired. I was so discouraged and was in utter despair. At Wednesday morning Bible study the Holy Spirit began to speak to my heart as He always does at the perfect time. He said through Tim Keller and my sweet sisters in Christ, "Jesus is all you need". "Jesus should be my joy." Of course intellectually I know that; however, sometimes I hold on so tightly to this world that I forget what my purpose is. I forget what Hannah's purpose is. I want Him to be my all in all. How could he be that if I never suffered? What would make me want Him if this life was easy?

I went home from Bible study so refreshed after talking with some of the ladies. Much of my energy came back, the pregnancy sickness was over (I'm right at 10 weeks). I felt like I could go on another day and actually go on with joy and cheerfulness that I so longed for. The sprinkles on the cupcake - God is so loving and gave us a special gift that day: Hannah always rides her bike with training wheels and does very well. Garrett and I were playing basketball and Hannah was riding her bike and I looked at her and noticed that she was not actually using her training wheels. She was totally balancing herself on her bike!! That is huge for her!

Thursday night was the highlight of the first week of exercises. We did the Snow Angel with Hannah and she was completely cooperative! We gave her a break and she immediately got down on the floor and started doing the Snow Angel herself! We are still so elated! If Hannah keeps up this pace, she will be ready for the harder sensory-motor exercises in no time! Thank you, God! And thank you, my sweet friends and family, for praying for us!

Wednesday, April 21, 2010

Urine Sample and Blood Test

Steven and I are going to wake up around 4am tomorrow morning so we can try to get a urine sample. This is going to be a hoot! First of all, I don't think Steven will ever wake up, but he will help me in his sleep. He is a machine! Secondly, Hannah may wake up the entire house because of her rage, and thirdly, we'll be very fortunate to get the first day's urine from her since she still wears a pullup to bed. But hey, we have to give it try. I am totally trusting God on this one. And if we can't get a sample then we'll just settle for the blood. I called Labcorp today and they are 100% prepared to restrain Hannah as needed to get the blood. The good thing is that they only have to get 2 large viles full of it so I'm hoping it will go quickly. This blood test will tell us if Hannah has any food sentivities at which time we will work on adjusting her diet accordingly. One activity in the BB program is training the smell sense to start working. Since Hannah has a right-brain deficiency we will be putting essential oils like peppermint, eucalyptis, and other strong smelling scents on her right collar. This has been proven to help picky eaters. Think about it...if we didn't smell the chocolate chip cookies and we had never eaten them, would we want them? We eat with our nose and eyes first and then our taste buds. If you have a brain imbalance none of those senses work correctly. My heart goes out to these kids!! I can't wait to post a picture of Hannah eating an ice cream cone. I know she wants to but she just can't do it.

Those of you who are praying for us, I truly thank you! Please pray that we can get this urine sample and also on Monday or Tuesday we will be taking Hannah to get the blood. Please pray that none of us including Hannah will be anxious and that the blood draw will be efficient.

Day 1

Monday night before Hannah went to bed we listened to the entire cd (35 min) of With Wolves and Whales, the cd that BB gave us to stimulate her right brain. The next morning, Hannah asked for her bath as she always does. Five minutes later, she was out with a towel drying herself off. This is very unusual because she rarely ever wants to get out of the bathtub at all. We have to make her get out so she can get dressed before the therapist comes.

We are suppose to have her listen to 10 minutes three times a day in the left ear, but I am playing it in the background as much as possible because she won't leave her earphones on. The music is powerful. I actually feel more focused myself, and Abigail is calmer than usual, a perfect side benefit!

This morning Hannah went right downstairs and helped herself to the last two pieces of pizza and did not even ask for her bath. She has been crawling around the house and rolling on the floor. Unfortunately, on the downside she is picking a sore on her face again. I hope that does not become her next obsession as we have been down that road. There is not enough duct tape to wrap around her to keep her from picking!!

Monday, April 19, 2010

It's been a difficult day. I'm fighting all kinds of emotions and quite frankly just plain sin: depression, anxiety, resentment, playing the victim. But literally at the end of the day, I can say that I have peace. I have always found comfort in God's sovereignty in all things. He loves me and my sweet Hannah and has a plan that as it is worked out, we won't understand everything that He is doing; but, when we are looking backward, we will see clearly. The Bible says that now we see through the window darkly, but one day we will see clearly. I am thankful that He isn't allowing us to hold on too tightly to this world. I'm still far from where Paul was...but by God's grace I will progressively look heavenward for my happiness and Hannah's fully glorified body and soul.

Consultation with the Doc

Good new and bad news...After reviewing Hannah's case more, BB has decided that it would be a waste of our money to have Hannah come now. The good news is that they have given us detailed primitive reflex exercises to do 3-5 times a day. These exercises are simple but very powerful. Unfortunately, even as simple as they are, we will have to work very hard to get Hannah to do them. We are also going to start working on sensory-motor exercises that target the right brain as well as listening to specific music that has been arranged just for right-brain input. Furthermore, we have to get a blood test....a daunting task. The last and only time we had blood drawn from Hannah was when she was 3. It took six people to draw the blood because they had to hold both legs and arms and head still. I was horrified and it brings tears to my eyes and sickness to my stomach thinking about it. The blood test will tell us what if any food sensitivities she has. When we know that, we can begin to change her diet per the nutritionist guidance.

All in all, I left the appointment optimistic, but overwhelmed. We have alot of work ahead of us, but we already knew that. I'm trying to live day by day but I have to admit, I feel like I need some "fresh air" all the time. My reading of Morning and Evening today comes to mind: "Come unto me all you that labor and are heavy laden and I will give you rest." This is a promise that I must cling to in the next few weeks.

Tuesday, April 13, 2010

Hannah's Going to Be a Sister Again

I'm pregnant. Just weeks after I dumped out my last bit of maternity clothes and most of my baby stuff I find out I'm pregnant! God certainly has a sense of humor. It really is funny....and exciting. I will say though that one of my first thoughts was, "God, does this mean that you are going to heal my sweet Hannah?" Garrett is heading to highschool next year and he has been a tremendous help to me especially in the instance that I can't take the girls out together. It is really stressful to go most places with Hannah alone...add Abby and it's double...add a baby and it's triple...minus Garrett and it's exponential! So, my initial thought was that if God healed Hannah then I would be able to take everyone out to the park or the zoo or the grocery store; otherwise, it could be hazardous to our health!

I always think I know how He should fix things, but I always find out that He knows best. If God heals Hannah through Brain Balance or any other means, we will rejoice until the day we die. If God chooses to keep her the way that she is, I know He will provide the daily bread/grace that we need to love her, teach her, and show her and our other children His glory today and every day.

Saturday, April 10, 2010

The Assessment

Yesterday, Hannah went in for her assessment in Golden, CO. They were actually able to get alot of information, in fact, enough to determine some of her defiiciencies! I was so impressed with and encouraged by the care that they took in answering our questions and working at Hannah's pace. Even though they have only taken high-functioning kids in the past, they are taking Hannah as a special case, an answer to prayer!! We go in to see Dr. Tami on the 19th and hopefully will have a clear path at that time.

So many of our family and friends were praying for us. We felt the prayers and we saw the results! God blesses the prayers of His people! Praise Him!

Thursday, April 8, 2010

Tomorrow's the first day

Tomorrow we go to Brain Balance of Golden, CO for Hannah's first assessment. She is severe and we do not expect her to be able to complete the assessment. The folks at BB will give us exercises to do with her at home for three months at which time we will go back to see if there was any improvement. We are cautiously optimistic about BB for Hannah. We have put her in so many therapies/programs. Everything has helped a little, but nothing has given her remarkable progress. She is very disengaged these days. She is in her own world, making colorful plastic shoebox tops her obsession. I admit that I am very depressed. Sometimes, I think I don't want to live if I have to watch my child "die". But I keep hoping...