This Roller Coaster of Life

I can’t believe it’s been 9 months since I last posted on here. I had such good intentions of updating, then life happened. I thought the roller coaster we were on was one with a few hills and descents- little did I know last July that just around the corner lurked a roller coaster that would rival anything I had dealt with before. Due to health issues just about all home reno has had to stop. I’ll explain more on that in a bit. Gene’s recently changed jobs, but that was for the good and we are so happy about it. We have had a lot of doctors’ appointments & a few therapy sessions. In August and September I took the girls to a combined total of 50 appointments. We stopped seeing the chiropractor in August when we realized the adjustments were causing us to have more dislocations (this may not be the case for everyone, but all 4 of us agreed on this for us). In the last 9 or so months Hannah, Rachel, Caroline, & I also started getting treatment for Fibromyalgia. We have had a few ups and downs during this time and I wanted to share some of them with you.

Sarah has been much improved in the last few months. The first struggle since her breakdown was overcoming her feeling of rejection and grieving that. The next biggest struggle was her eating. It seemed like most everything caused her stomach issues, which in turn caused extreme pain, which led to anger and lashing out. Sarah is mentally about 6, deaf, and autistic. When she begins to hurt, she doesn’t understand where it is coming from and doesn’t know how to communicate that, much like a young child. We have been doing a lot to work on her gut health with probiotics as of late and have seen tremendous strides. She is happier, more engaged, and sleeping much better. 

Caroline’s health journey has had the most ups and downs. Last summer she started by having gastro problems, trouble eating, and feeling extreme nausea- all of the time. She still has this issue but all of her gastro tests came back as normal. She has also had some neurological issues with buzzing in her head (imagine a lawnmower in your head), tinnitus, migraines, night terrors, and a type of paralysis that comes with her allergic attacks. The allergic attacks range from passing out when she smells, touches, or eats something (the list of things in this list is ever growing and we never know what new thing will cause it to happen). She has also reacted by having mild anaphylaxis (which at any time could go to full blown) and the paralysis I mentioned which will last from 30 minutes to an hour. We have seen many doctors about these issues. This week we are seeing our second neurologist and we are traveling to Jackson to see our third allergist. Many doctors will look at the symptom list and either tell you it’s not their field, they don’t recognize it, or the really wonderful ones (note sarcasm) will tell you it’s all in your head- no pun intended. She is also going to be seeing an endocrinologist and cardiologist in the near future. 

Rachel has seen huge improvements in the last 9 months. In October of 2015 we bought her a wheelchair because she was gradually getting weaker and by January of 2016 she couldn’t walk more than a few steps without collapsing. Part of this is due to POTS (Postural Orthostatic Tachycardia Syndrome), and part of it has a neurologic component that we haven’t pinned down yet. The neurologist initially thought she had cataplexy (part of narcolepsy) but the sleep study didn’t show that. We go back in a few weeks to see what we can determine there. She also began having a lot of neck pain last summer and began using a neck brace. In August she began PT and they helped her a great deal. By the end of it she was able to walk around with the aid of a walker. Then her aunt and uncle gave her a treadmill which helped her endurance and by Oct she was walking in a store for the first time unaided. Now she only uses the chair very rarely on a really bad pain/weakness day and she hardly ever needs the neck brace. Rachel is also having some issues that seem similar to Caroline’s allergy issues (not the passing out though) so we have been using some antihistamines with her and they seem to be helping.

Hannah has many of the same issues that Rachel and Caroline experience but sadly can take little medicine to alleviate the issues. Back in the fall the doctor put her on Claritin to try to help the issues and after taking one pill (it was gluten free) it had her in bed barely able to function for 2 weeks. Thankfully she is able to take Gabapentin for her fibro which is really helping. She has started to take some vitamins that seem to be helping, but she has to add them in very slowly. It can take two weeks to get her up to a full dose. She has to start by holding the pill, then she moves on to tasting a little and gradually increases until she is able to take the pill. We have found that by going this slowly we can often find something that causes her a reaction. Though that didn’t work with the Claritin. She is also able to take BC when she has pain (most days) and we are very thankful she is able to tolerate it. 

I was able to go to the doctor in November and was also diagnosed with Fibromyalgia. I suspected that I had it for years, but back when it first flared up there wasn’t really anything doctors were doing for it and it seemed manageable, so I didn’t worry about it. The doctor started me on Gabapentin as well but unfortunately I don’t respond as well as the girls do to it. For me it makes me really tired and run down feeling. I have heard from others that it causes them severe neurological issues. I will go back in a few weeks and will talk to him about some other alternatives. The day after Christmas was a very sad day for us because my mother died. She had been in declining health for 2 1/2 years. It was a very sad time, but it was good to be able to re-connect with family we hadn’t seen in so very long.

Here are some stats from the last 9 months:
Caroline: 
ER visits: 4

Hospital admissions: 1

MRIs: 2

Major Tests: 6- colonoscopy, endoscopy, swallow study, gastric emptying, gall bladder function (2) 

Rachel:

MRIs: 2

Major Tests: 2- sleep study, nerve conduction

Hannah:

ER visits: 1

Every time they go to the doctor there is usually some type of bloodwork to be done, so we wouldn’t really count that as unusual. 

This brings you up to date on our life and the wild roller coaster ride that it is. We have been truly blessed through these trying times with strengthening love for one another and seeing how God sustains us even in the most difficult of times. This slideshow is a small glimpse into our life over the last 9 or so months. I’d love to hear from you, so please leave a comment and let me know who you are. If you have any questions, please feel free to ask and I will answer them to the best of my ability.

Blessings! 

Please Don’t Pray for God to Heal Me

I know I haven’t written in a while and my next several blog posts will give you a fuller picture as to why I haven’t. Before I get into why I don’t want you to pray for God to heal me, I want to give you a snapshot of my life at this very moment. If you are unaware Hannah, Rachel, Caroline and I all suffer with chronic Lyme and for the last 3 years Sarah’s has been recovering from a breakdown (read about that here). It’s 11:43pm, I’m sitting at my desk with most of my joints hurting in addition to an unexplained pain in my lower back that is shooting down my leg with no end in sight. I have been suffering from much more frequent Lyme attacks and many nights am unable to get to sleep until 6am because of muscle spasms, Sarah, or both. If Sarah is asleep before 3am I will be happy. Now, waiting for her to get to sleep doesn’t consist of just sitting back chilling, it is a constant battle to get her to stop screaming- and I mean screaming- blood curdling screams. The other night, she never went to sleep. I finally tapped out at 7am and Hannah took over for me. Hannah is battling extreme fatigue, muscle weakness, brain fog, confusion, difficulty communicating, and exhaustion. Rachel has been dealing with atonic seizures, general overall weakness, brain fog, and exhaustion.  Caroline has been having migraines and has hardly left her bed for two weeks. She has many of the same Lyme symptoms as Hannah as well as some others. The other day we went to a new doctor to have her checked for POTS and EDS. The doctor found an arrhythmia and did an EKG at that time. They have also run blood work and she will be going in for an echo-cardiogram and CT.   All 3 of the girls are pretty much home-bound. They each haven’t left the house more than a couple of times for anything other than chiropractor visits since Thanksgiving. 

I’m not listing all of this for sympathy, but to put the following in context for you. As of late the girls and I have had many conversations about where God has us. Due to a conversation one of the girls had with someone I have really been thinking about this. Over the past almost 5 years we have had a lot of conversations with people about our illness. Actually, it’s been longer than that. For many years before we knew what was going on they had issues and symptoms that kept them at home most of the time. 

We have heard many different comments from people over the years. Some meant to encourage, some were veiled criticism, and some were just plain unkind. Here are a few of them. 

“I think the girls just have their schedules switched around like a baby’s. If you flip it, everything will be fine.” — Referring to the girls insomnia

“I think we should all want to be at church so that we can fellowship with other believers.” — from an elder’s wife when the girls were too sick to attend for months

“There must be sin in your life, if you repent they will get well.” This comment has been made by everyone from pastor to layperson to Gene and I as well as the girls. 

“You just need to eat this/use this herb/oil/supplement/routine.” This is something often said to us by people who haven’t really taken the time to understand what is going on and who are offering us a cure all. We do have people that know what’s going on that make good/informed recommendations and are helpful.

“They don’t look sick.” or “I saw a picture of them on FB and they looked like they felt fine.” They don’t realize that because of whatever outing they were on in that picture they could be in bed for up to a week or more.

“I saw that they did _____ why weren’t they up for ______.”

“God doesn’t intend for us to be sick, if we’re doing things right, we should have good health.”

Many of these comments are meant with good intentions. They are often borne out of a lack of understanding of our circumstance and of scripture. The reality is, it’s easier for people to lay blame rather than face the reality that God doesn’t promise us an easy life. If we look at the life of our friend Job, we will see this to be true (he’s become a very good friend of mine over the last few years. If he’s not your’s, you really need to get to know and understand him). God called Job “blameless and upright”. All of the tragedy that befell him wasn’t due to his sin, though his friends said it must be (sound familiar?). Job never cursed God though people told him he should. He suffered, he agonized, he didn’t understand, he felt overwhelmed. I have felt all of those things many times over- on an almost daily basis. Yet in all of the despair, he knew God was there and in control.

The thing is, God didn’t promise me happiness, he promised me joy in Him. He didn’t say I wouldn’t have trials- He said I would and that they would bring about fruit in my life and work together for my good. He said I would be weak, but that I could find strength in Him. He said I would despair to the point of not knowing how to pray- but that the Spirit would pray for me. He never said that He wouldn’t give me more than I could handle- He will never give me more than HE can handle. 

You may be asking yourself, “Why don’t you want me to pray for your healing?” Because I want God’s perfect will for my life, as do Hannah, Rachel, and Caroline. We recognize that God has allowed this in our life for a reason- to bring glory to Him. To think otherwise would imply that God is not in control and He is. He is in control of every molecule and atom in this universe. Nothing escapes His notice, so therefore, He must have allowed this in our lives. Does that mean we sit back and do nothing? No. We treat our illnesses as best we can, but trust God for the outcome. 

Many believe that God’s main purpose is to heap blessings upon us. It’s not. Our purpose is to glorify God in all that we do and say. If I am spending my days and prayer time saying, “God, please heal me- take this away.” I’m not saying,  “God, show me your will in this and how I can best serve you through it.” To be honest, as of late my prayer has been more along the lines of, “God, I don’t know how to bear this. I am overwhelmed, exhausted and hurting. I can’t even focus to read your word or pray. Please help me! Give me the strength I need to take care of my girls. Give me the wisdom I need to help them! Forgive me where I fail you and let my fatigue and feelings of being pressed down and spent cause me to be unkind, selfish, and self-pitying.” 

So, how can you pray for us and others in similar circumstances? We need prayers in so many areas. 

You can pray for: 
                Strength, Wisdom, Sleep, Encouragement, Seeking His Will, Being Accepting of His Will, Contentment, Compassion, Patience, Joy, Peace, and so many more Godly traits. 

Every trial that has come into my life is for a purpose. I don’t pretend to understand it. And please don’t think I am above total despair- I’m not (just keepin’ it real here). I can’t count the times I have asked God to deliver me from this. To deliver my girls- as a mom it rips my heart out to not be able to help them. But God has taught me so much. I think I love them- but His love for them greatly surpasses what I can even imagine. He’s got this! I just need to be reminded of it sometimes. 

This song is our hymn of the month at church. God knew it was exactly what I needed. I hope that you will be blessed by it as well. 

 

Looking Back- 2014

This last year has been one of changes and growth for our family. It started out with our family being in a very hard place. We had been dealing with Sarah’s breakdown for 9 months and it was taking a toll on us all. A year later we are still dealing with it, but we are in a much better place spiritually and emotionally.

In 2014 we confirmed what I had  suspected for years, Sarah is autistic. It plays a great role in her breakdown and inability to handle the great rejection that was placed upon her.  We have learned so much in the last year about how diet can help or hinder her autism. Sarah now eats gluten-free, grain-free, dairy-free, egg-free and low sugar foods. She also avoids artificial preservatives, colorings and additives. This has put us on a huge learning curve as to how diet, nutrition and medications affect her.We found out that some foods are like a drug to Sarah and she is addicted to them just like an addict is to drugs. We also found out the hard way how something as simple as rice can send her to a place you don’t want to go.  Sarah has been off of her seizure meds for over a year now and hasn’t had a single breakthrough seizure. She used to have them whenever she didn’t sleep enough, but she has had some nights with no sleep and still no seizures. We are working on getting her on a decent sleep schedule which hopefully will allow me to get to sleep before 4:30am (sometimes it’s 10am).  

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Gene has been working 10 hrs a day (before dawn to late afternoon) 7 days a week since July only having a couple of days off during that time until last week at Christmas. When he did have a day off he was on the road to Louisiana (more on that in a bit). Hannah, Rachel & Caroline have been such a blessing to me during this time. I couldn’t have survived if it wasn’t for them and I wouldn’t have gotten any sleep. Thankfully, when I can’t stay awake any more they can usually take over for me. Though there were several days where I only had an hour of sleep a day for several days in a row. Thankfully we seem to be past that and boy am I thankful. 

From August until October things with Sarah were off the charts crazy (that’s when I got little to no sleep) but things have evened off greatly. Sarah is much more cooperative and has improved greatly since then. We still have a few days of craziness when her hormones flair, but she is much better than during those 3 months. 

Sarah is improving in obedience and awareness of others, though there is still much work to be done. We are so thankful for what the Lord has shown us in this area. A year ago I wanted the “old Sarah” back. This year I am much more realistic about it (more on what the Lord has taught me in a subsequent post). Now she is the new and in some ways improved Sarah. I would say she is at about 75% of where she was. I think it will probably be harder for her to trust others in the future. It’s hard for anyone to learn to trust again after being hurt in such a way. 

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I can see a great deal of spiritual growth in the girls this last year. They have been my right hand and my left. They have encouraged me when I am discouraged and helped me greatly when Gene is working. They are each battling Lyme and are at different stages of treatment. Hannah and Rachel are both seeing progress with their treatment. Caroline will be starting back on hers after the first of the year.

The last half of the year has been prepping for a move back to the town in Louisiana where Gene and I grew up. We hope to be moving back in early  spring, Lord willing. Gene has already made a couple of trips up there with boxes and will make a couple of more before the big move. Last Sept it seemed like spring would take forever to get here, but now that it’s a mere 12 weeks away, it seems awfully close and there is just so much to do. 

We’re ending our year on a very special day as we do every year.Today Gene and I will be celebrating our 31st wedding anniversary. I am so thankful to be married to the man I am! He is above gracious and understanding with me. He has been a rock for me during these difficult times and I am so blessed to have him here to help me. 

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As our year wraps up I look back and thank the Lord for every day in it. He has taught us to rely on Him, to rest in Him, and to trust in His faithfulness (I will share more on that in a following post). We have been blessed beyond measure and the Lord has given us what we have needed moment by moment. I pray that this new year will find you seeking the One from whom all blessings flow. 

 

 

 If you’d like to read more about what’s been going on with Sarah, this link will give you all of the articles I have written on her.  

Making Hard Decisions

Last night as I was typing up my post I got the kind of phone call we all dread. My brother called me to tell me that my mother had fallen in a hospital parking lot (actually she was blown over by a strong wind) and had broken her hip. I was faced with some hard decisions. My parents live a 6 hour drive from us, so that makes things complicated. For some people picking up and going at the drop of a hat isn’t a big deal. For us, it’s a big deal. I have two daughters who can’t eat anything other than what we prepare, and we have to make all of our food in advance. The last few times we have gone Hannah and I have pulled all nighters preparing several days worth of food, for 6 people with 3 different food restrictions/diets.

As moms we all have many decisions that we have to make every day. What meals to cook, what errands to run, how to do school. . . the list is endless. Some decisions are easier than others. Trying to decide what to do about traveling was making me physically ill. I don’t know about you, but I hate to feel like I’m letting someone down and not living up to their expectations of me.

As I tried to decide what to do several things were weighing on me.

Sarah- I’ve shared about her trials here, here, and here. Just last night I was up with her all night. Caroline relieved me at 8 am and Sarah finally fell asleep at 8:30am and slept for a few hours. Right now Sarah sleeps well about every third night. Sleeping well means that she is asleep sometime between 12 am-2 am and waking between 5am-8am. We just started her on the SCD diet and are starting to see some results. A trip might throw a wrench into things as she tends to regress after a trip or any additional stress.

Hannah- has been battling Lyme which presents in her differently than the rest of us. She has vestibular hyperacusis which can cause her to have anxiety issues, which can in turn lead to bouts of depression. These are chemical issues that we are treating, but it has flared to a severe level lately like it has only one time before. I have been staying up at night keeping watch over her. She often wakes between 4-6am having a mild panic attack and needs someone to be with her. Since we have added some supplements to help with this she is doing better, but they are not completely effective yet.

Rachel- has been battling her Lyme which can present with atonic seizures and many other symptoms. She has to take things easy a lot, though she tries to do as much as she can when she is up to it. She has written about her Lyme here, here and here.

Caroline- has also been battling Lyme, her symptoms have started getting more severe in the last few months. She has a lot of fatigue and brain fog. She has also been battling her asthma  a lot lately.

Gene- works long hours and has been working 6-7 days a week since last September. Between my schedule and his, we are getting to see each other occasionally on Sundays and about an hour and a half before he goes to bed.

Right now my sleeping schedule has roughly been 8 am – 2 pm. As I was going to bed this morning I got a text telling me that my mom’s surgery was happening in just a few minutes. At that point I was too exhausted and emotionally drained to think about what to do. I prayed before I went to sleep wanting some direction. It took me a while to fall asleep but once I got to sleep I rested well. When I awoke, I knew the decision I needed to make. We already have a trip planned to see all of our parents for Memorial Day weekend, so I decided to wait until then to go home.

This decision wasn’t easy, but I knew it was the right one. Often there will be demands coming at us from all directions. All of these things may seem urgent and like something we must do. It helps me to stop and think about my priorities. Right now the most important thing for Gene, the girls and me is to get Sarah better. We will sacrifice most anything for that to happen. So as I weighed out making a rushed trip, lots of long hours and the stress this would put on Sarah and the other girls (I knew that if we did this, there was a high probability that the girls would be in bed for up to 2 weeks after, trying to recuperate) I decided that the cost was too high. Going by myself wasn’t an option due to Sarah needing my constant attention. I also didn’t feel that I could juggle Sarah’s needs and the other girls while on the road alone.

Was this decision hard? You bet, but once I made it I knew it was right. I decided to stop beating myself up because I can’t be everything to everyone. I have made the wrong decision plenty of times, and my whole family has paid the price. It is so easy to fall into the trap of doing a lot of good things and pushing yourself harder than you should. It is important to know your priorities, which will help you not over-commit.

Choices come in different forms, whether to let the kids play ball, or take a class, to go on a trip or commit to something at church. All should be weighed according to the responsibilities God has given to you. We need to be good stewards of our time, just like we are with our money. I have also learned to sleep on such decisions before I make them. Things always seem clearer after sleeping on them.

Over the last 30 years I have made the wrong decision many times. I have worked over the years to streamline our commitments and to focus on our priorities, but I don’t always get it right. Everything we have been going through in the last year has really helped me solidify my priorities. My hope is that when life gets back to normal (whatever that is), that I will continue to be diligent in guarding our time and making the right decisions for it.

How do you make the tough decisions? How do you know you are making the right one?

Sarah and Autism

Many who know Sarah now don’t know all that she went through as a child to get where she is today. I have been talking a lot about where she is now and the events that have transpired over the last year.  Since I wrote my post yesterday I have confirmed some suspicions I have had for years and wanted to share it with you. I thought it also might help to have some detailed background as it might be helpful to someone who comes across this blog.

Sarah was born full-term on 9/10/87 weighing 5 pounds 10 ounces. That was average for me, though small for many. During my pregnancy there was an issue with ultrasounds, every ultrasound said she was due Oct 15, but I saw my doctor at 2 weeks gestation, so we knew that was wrong, just not why. That mystery is still unanswered.

Sarah did fine for the first three months. She rolled over on time, smiled on time and seemed normal. She had her shots at 2 and 4 months like babies are supposed to. At 6 months she didn’t sit. She was like a floppy doll with no upper body strength. Then a friend moved in next door with a baby 2 days older than Sarah. The differences were so obvious. I will never forget the day I took Sarah in for her 6 month check-up. The doctor told me her head wasn’t growing properly and that she was micro-cephalic (that is a big word meaning she had a small head).  We had to wait 2 months to see a pediatric neurologist who then told us that Sarah would never walk, talk or do anything and that we should just do ourselves a favor and institutionalize her. During this time she also had her first seizure. A month after this we realized she was probably deaf.

There were no answers coming from any doctor. They didn’t give us a diagnosis or prognosis other than what the neurologist said. Right before her first birthday we moved to Dallas. At Texas Scottish Rites Hospital we saw the first doctor that gave us any hope. I will never forget that day either. He looked me in the eyes and said, “I can’t give you any medical reason to back this up, but I believe Sarah will do things. Let her try what she wants and don’t give up on her. I see something in her eyes that tells me she’s there.” That’s all this mamma needed. At that time we were trying to get her a special chair called a freedom seat because she couldn’t sit.  Even though Sarah couldn’t crawl, she could get around really well though. She rolled everywhere and she was quick. At 18 months she sat for the first time and we canceled the freedom seat. After that came scooting. She never crawled because she had a right side semi-paresis. Once she could get around she would pull herself up into a chair by grabbing the rungs in the back and pulling herself into it. She was very strong in her good arm. Things continued like that for a couple of years.

During this time of her life Sarah also had a lot of choking/gagging issues. Usually the hardest foods to eat were things like mashed potatoes. At two we had the diagnosis that she was profoundly deaf. In other words a jet could be behind her and she wouldn’t hear it. A very small percentage of people with hearing loss are that deaf.

As she grew she had several things that were different that she did that I didn’t have any explanation for. Because she wasn’t walking she was in diapers still. Every day, after lunch, she would dirty her diaper and then proceed to smear it’s contents all over her bed, her wall and anything else you she could smear it on. Sorry if this is TMI, it’s just how things were. You might say to yourself, wait her out. We tried, didn’t work. I tried duct taping her diaper on. I tried everything I could think of, all to no avail. This finally stopped when she was potty trained and never has someone been so happy for potty training!

She is the only child I had who would climb out of her bed. Long before she could walk, she would work her way out of the baby bed. After a while we gave up and put a mattress on the floor for her. Then the battle of staying in bed began. Oh, what a battle that was. When she was 3, before she could walk, I would put her to bed, put two gates in front of her door, and then a small dresser in the hall in front of that. She would lie on her back and push with her legs until she has moved the gate and the dresser enough that she could escape, and then off she would scoot. I don’t know how many times a night we did this.

She loved going to church, but wasn’t really social when she was there. At home, church, playground, everywhere she pretty much stayed to herself. You could interact with her for a short while but not for very long. She loved having her toys/dolls but she was not really one to cuddle with them or play with them a lot. She was very OCD about them though and wanted them in their certain spots.

Sarah finally began walking at 4. Then she took off! We jokingly nicknamed her “Stopper”, because we were always yelling ahead to people in the halls at church to, “STOP HER!” as she ran off.

Sarah has been diagnosed with several issues. She is classified as having a seizure disorder, cerebral palsy, an anxiety disorder, developmental delay and she is deaf. I asked one of the many doctors for a “name” for what she had. Her response was, “Does it really matter?” We could have done lots of testing, but it wouldn’t have changed anything. In the back of my mind I always wondered if she might have autism. Just because of how anti-social she is and how she doesn’t like to interact a lot. Recently a friend spent some time with us one evening and she suggested that Sarah might have autism. She has a son who is a high functioning autistic so she recognizes the signs.

I have been reading the book, Breaking the Vicious Cycle, because we are putting Sarah on that diet(referred to as the SCD diet). It has helped children with emotional issues which is the reason I was putting Sarah on it. As I read and researched more online I began to see Sarah in much of what I was reading. Since her breakdown she has begun doing odd motions/movements and making odd sounds that she didn’t make before. Her behavior and actions drastically changed. Today she is nothing like before. Though we get glimpses of “the old Sarah”. I came across this video last night and it is amazing how much like Sarah this is. I found out that those odd mannerisms, movements and sounds had a name, it’s called stimming.

It may be true that having a diagnosis for what she has doesn’t really change anything, but it helps me greatly to understand what is going on better. We started the diet about a week and a half ago and we are already seeing great changes. When I got up today I was surprised at how different she looked. The Lord is in control of her progress and we are trusting in Him as we go through this daily. We are thankful that this diet may help her. Our hope is once she works through the stress and anxiety that she is working through the stimming will diminish

Please share any thoughts or experience you may have. I’d love to have input if you have encouragement to offer.

It’s Been One Year

It’s been one year since a dark cloud passed over our house. If you had asked me then if I could still be fighting this battle a year later I would have probably told you I couldn’t survive it that long. In fact, I’m sure I said something about not being able to carry on like this in the early weeks. The war is still being fought, but many battles have been won. We know who has victory in the end, but we must continue to fight until that time.

The LORD is my shepherd, I shall not want. He makes me lie down in green pastures; He leads me beside quiet waters He restores my soul; He guides me in the paths of righteousness For His name’s sake. Even though I walk through the valley of the shadow of death, I fear no evil, for You are with me; Your rod and Your staff, they comfort me. You prepare a table before me in the presence of my enemies; You have anointed my head with oil; My cup overflows. Surely goodness and loving kindness will follow me all the days of my life, And I will dwell in the house of the LORD forever. Psalm 23

This Psalm and many others have brought me great comfort and remind me minute by minute that the Lord is there and that He will restore my soul. He has taught us many things over the last year. The valley that we have passed through has been deep and very dark at times, but we were comforted by His presence.

Family- The Lord has brought us much closer as a family. Gene, Hannah, Rachel Caroline, and I have grown spiritually in ways that we couldn’t imagine. We have learned that we need to be willing to share our deepest hurts and concerns with one another so that we may get support and so that they are not used as a tool of the enemy.

We have had to watch Sarah writhe and wail in emotional and spiritual agony. This is not easy to see (or write about). The complete helplessness we have felt has no description. We have had no choice but to trust in the Lord. We saw early on that it was only the Lord who can heal the heart and mind. We have been called to love and direct her but He must do the work. That was a really hard thing to learn. It’s like the old saying, “Let go and let God.”

Friends- Boy, did we learn a lot here! We found some true friends that are like precious jewels to us. They listened as we cried, admitted that they didn’t have all the answers (or sometimes any answers) but they were willing to listen, lift us up and encourage us in doing good.

We also found many that were more like Job’s friends. Gene and I were told more than once that this affliction on our house was due to our sin and that God wouldn’t remove it until we repented.

 As He passed by, He saw a man blind from birth. And His disciples asked Him, “Rabbi, who sinned, this man or his parents, that he would be born blind ?”  Jesus answered, “It was neither that this man sinned, nor his parents ; but it was so that the works of God might be displayed in him. John 9:1-3

I have many thoughts on why people say/think such things. I believe that it is easier to think that things such as this can only happen to people because they are in sin. It can make us feel better about things and not have to face the possibility that something devastating  could happen to us. It also feeds our pride, with those lovely holier than thou thoughts we all like to think- “at least I’m not like them” – we say to ourselves. It also shows a lack of understanding that trials come to us all. As scripture says, “rain falls on the just and the unjust.” The truth of the matter is, God has His ways, and they are beyond our comprehension.

Faith- We have been strengthened through this in many ways. We know that we can do nothing without His help. So many days I felt like I couldn’t get out of bed, I didn’t even know where to start (I still feel this way many times). I don’t know what my day will hold. Will Sarah be calm and cooperative, or angry and combative? I don’t know from moment to moment how she will act/react. I often melt into a puddle, crying out to God to help me, this is so far beyond what we know how to do.

“I used to tell young preachers, in order to preach you’ve got to have the power of God on your life. Now I tell them, in order to tie your shoes you’ve got to have the power of God on your life.”-Paul Washer

He has been faithful and brought us through many days of little to no sleep. The emotional roller coaster at times has so many loops that I get dizzy. But He’s there through all of the twists and turns to comfort me and carry me when I can’t go on. We often think that we have to be strong (that’s another Christian myth that has been shattered in our lives), we don’t. We need to be weak. It is in our weakness that we are made strong, only through Him.

Our prayer is that the Lord will restore Sarah, if it is His will. Other than that, we pray that the Lord will use our suffering in the lives of others. So, here are some challenges for you.

Think about those in your life who are struggling. Have you called/texted/e-mailed them lately? Often we are good about keeping in touch with people when a crisis is fresh, but forget about them as time goes on. I can promise you the loving words of a friend can be a balm.

Make sure that you aren’t like Job’s friends when dealing with those that are hurting. Are you encouraging or laying blame?

Listen- I can’t emphasize that enough. Listen to their circumstances, their needs and struggles. Don’t assume that you can come into a situation and fix everything. When it doesn’t work out, it just causes them to feel more defeated, hurt and confused. If you don’t know what to do or say, ask. Ask how you can pray for them, or if you can run to the store for them.

Do you have any other challenges you can offer based on something you have gone through? Please share if you do.

Here are a couple of posts that Rachel has written where she shares her heart about what we have been going through.

A Blessed Weekend

Prayers Answered

 

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Darkness

Writing has been difficult as of late. Words don’t flow – emotions are percolating too close to the surface. I have shared in the past some of what we have been dealing with both here and here. Last night was a difficult night – I’ve had quite a few lately. It was filled with tears, raw emotions and a lack of sleep. When I awoke today, this free verse poem was floating around in my head – well, really it was stomping around and wouldn’t stop until I wrote it down. I’ve never done this before, so please don’t judge too harshly. It shares some of the emotions and feelings we have been going through for the last 50 weeks. Yes, it’s been that long. Truth be told, many days I don’t see a light at the end of the tunnel.

 

Darkness

My eyes open with a start!

I’m surrounded by darkness.

Where am I?

How did I get here?

I’m alone, afraid, panicking!

How do I get out?!

I just want out!!

I want to feel the sun on my face and hear the birds singing.

I hear the slow drip of water- it’s damp and cold.

Little feet are scurrying around me.

Where am I?

Why has no one come to help?

 

I move, but am aimless.

I can’t find my way in the darkness.

I feel it pressing down on me.

I stumble and fall – scraping my knee.

I cry out!

I Am! Where are you?

He is here! I can feel His presence.

I feel peace in the midst of the darkness.

 

I hear someone crying out.

Pain – torment- agony – terror!

I run toward the sound, stumbling again and again.

I Am! Help me find her!

He calms me.

I move toward the sound talking to I Am as I move.

I can’t see anything but I know that He is with me.

He reassures me – He will provide a way.

 

I reach the crying one- in a heap, covered in dirt.

The gut wrenching wailing continues.

I reach out to comfort her.

She thrashes at me,

directs all of her anger and sadness toward me.

I feel heartbreak – sadness – confusion – panic!

How can I help her?

 

I try to get her to come with me.

We must find a way out of the darkness!

She resists.

She wants to stay?!

I try to help her along but she fights me.

In the dark and dank we argue for hours.

I call to I Am.

He is there- I can feel His presence.

The battle rages on.

Eventually she trusts enough to come with me.

 

We find a tunnel and see a speck of light.

A way out!

Pulling her toward the light – still she resists.

I Am! I need strength!

Struggling with her is making me weary!

I don’t know if I can go on!!

Rest.

He wants me to rest?

The end is near! I can see the light!

Reluctantly I rest.

She rests.

 

We move toward the light –

a little less resistance.

The light!

Disappointment and despair!

This is but a crossroads-

not the end of the journey!

 

I can’t continue- the struggle is more than I can bear!

What direction do I go?

I don’t want to go back into the darkness!

Is there no other way out?

She doesn’t want to go!

She seems to like it here.

She rails against me – blames me – yells at me – fights me.

I Am! Help me!

Which way do I go?!

How do I help her?!

We bow together.

She calms.

Peace returns.

I have direction.

I step into the darkness once again – she follows.

Afraid- but at peace.

 

I don’t know how long the darkness will last.

It may never end.

I Am will be with me.

He will guide and direct me.

No matter how dark it gets – He will be there.

 

This doesn’t end with a “happy ending” because life isn’t like that. The truth is, God isn’t up in heaven saying to himself, “How can I make Lora’s life easier so that she will be happy all of the time?” He has a purpose and a plan. Sometimes that plan is raw, painful and difficult (just ask Deitrich Bonhoeffer). It has a purpose none the less. The hard part for us is to figure out how to glorify Him in the midst of the darkness. Because my purpose above all others is to bring glory to Him.

If you feel as if you are in the darkness, please share. I will pray for you. It helps me to have others to pray for, to remember I’m not the only one trying to find my way in the darkness.

Rachel re-did my blog for me! She is a great blessing and encouragement in my blogging adventures!

Life In The Midst Of The Storm

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When we were on our way to Louisiana for Papaw’s funeral we ran into a rain storm. You know the kind where you can hardly see the car in front of you? The picture above was taken in the midst of the storm. The storm was so bad and visibility was so low that all of the cars had their flashers on to try to be more visible.

In April a storm hit our family full strength. Like a hurricane we had warning signs, but when the warning signs were coming we didn’t know the strength of the storm that was behind them. This storm was in the form of illness in one of our children. Unfortunately it wasn’t the type of illness that you can put a band-aid on or treat with medicine. It was an illness of the heart and mind brought on by extreme heartbreak. Our daughter Sarah will be 26 next month, but mentally she is 6 and along with that comes the innocence of a young child. She loves and lives in a world that doesn’t comprehend unkindness and the inability to show love. She was plunged head long into that realization, and it took a hard toll on her.

For weeks that have turned into months we have been unsure of her outcome. We honestly don’t know if she will ever be the same again. There are changes that I think will help her in the future, she is seeming to learn to cope with things which she had be sheltered from in the past. At times we see a break in the clouds and in the distance we can see hope. But it’s in the distance.

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I have been trying to get life back to some semblance of normal. I don’t know what normal really is anymore. For 8 weeks it was me sitting on the couch beside Sarah every waking minute trying to make a connection with her and sleeping on the couch in the family room while she slept on a air bed a few feet away. Many of those nights were sleepless, full of worry, anxiety, confusion, prayer, and desperation. I can say I have never felt so desperate as I have in the last few months. Desperate to know how to help my child, desperate to fix things, desperate to have God give me clear direction. And He has. I can’t count the times that He has given me clear direction as to how to help her, and when I have followed that leading, I have been given what I need most of all . . . hope.

He really does offer help for the hopeless, because I have been that hopeless person as of late, not understanding, feeling like I am walking through a storm that has no end; hoping I don’t get lost in the process.

I have been so blessed to have the husband I have and Hannah, Rachel, and Caroline who have all been here on a daily basis to bring encouragement to me when I felt I couldn’t make it another moment, much less another day. Life has been raw. Ripped open. Shredded. But even in the midst of this God is glorious! He is brings restoration to my heart and healing to my soul.

Sarah needs your prayers. We all do. We are so thankful for the prayers and encouragement of extended family and friends. It can be heartbreaking to not know if she will be the same again. Mourning is part of daily life here now, mourning and missing the Sarah that was, and now mourning the loss of Papaw.

I don’t know what lies ahead. I just know that I’m trusting my Savior to bring us through it and sanctify us in the process.

Happy Birthday Sarah!

I wrote this post 7 years ago, just one month into my blogging journey. Many people here in Texas only knew us once Sarah was older and don’t realize the journey we went on to get to the place that we are. I have been considering writing more about the lessons the Lord has taught me through her and hope to start doing so in the next couple of weeks. I hope that the testimony of the Lord’s goodness and mercy will in some way bless you.

September 10th was our daughter Sarah’s 18th birthday. That’s a special day in anyone’s life, but for Sarah it was doubly special. When Sarah was born, she seemed like every other girl baby, though she was especially happy and easy going. She began reaching all of the normal milestones a mother looks for, such as rolling over, smiling at her parents and sister. At 6 months old we began to notice that she wasn’t trying to sit like she should. When it was time for her 6 month check up I shared some of my concerns with my pediatrician. Everything was going great until he measured her head. I will remember the next thing he said for the rest of my life. He looked at me with a great deal of concern in his eyes and said, “Mrs. Keeth, for some reason Sarah’s head isn’t growing like it should. She has microcephaly.” Microcephaly just means, small head. He was unsure of the reason behind the problem and wanted her to see a neurologist. He told us to watch for seizures, but that it would take up to 3 months to see a neurologist.

This news sent me into the deepest pit of dispair that I have ever been in. It seemed as if it was all a dream. As the days went by, I found out that some children who have microcephaly slowly die as their brains grow but not their heads. To me this was an unthinkable situation to be in, to slowly watch my baby die was more than I could bear. I began to pray that she would die in her sleep from SIDS. In my thinking this would be easier on everyone. She wouldn’t suffer and neither would we. I thought I had figured out the best solution for everyone, if I could only make God see it my way.

The weeks went by, we finally were able to see the neurologist. During those weeks, Gene had switched jobs and we didn’t have any insurance. We ended up seeing a neurologist at LSU Med Center in Shreveport. We waited 5 hours in a waiting room and when we finally saw her it was a horrible experience. This was a teaching hospital and they treated Sarah like a specimen, not a person. They acted as if nothing they were saying should affect us emtionally. The doctor told us in no uncertain terms that, “She will never walk, talk or do anything. You need to institutionalize her and get on with your life.” The results of her exam were that she had Cerbral Palsy,Developemental Delay and Epilepsy.

I don’t know what I would have done without Gene at that time. He was so strong always reminding me that God was in control and had a plan.

A few weeks later, I noticed that Sarah didn’t react when I vaccuumed under her baby bed. She just laid there laughing and smiling at me. I took her in for some testing and we suspected she was deaf. It wouldn’t be until she was nearly two that we had the confirmation that she was.

Time went on, and Sarah was a light into my life, and into everyone’s she met. She was always happy and joyful. I can remember going to see a neurologist at Texas Scottish Rites Hospital in Dallas. He was the first one to give me hope. Sarah was 18 months old and couldn’t sit or even support her upper body weight. He examined her and when he was finished he said, “I can’t tell you why medically, but I believe Sarah will be able to do whatever you allow her to do. I can look into her eyes and see that there is more to her than what you have been told.” That was all this mother needed to hear! A week or so later I went to see her pediatrician again and told him what the neurologist had said. His answer was, “I don’t believe that. There is nothing to show me that.” His words didn’t deter me though, I had been given hope. God knew that’s what I needed.

Within a few months Sarah began to sit. And then she learned to pull herself up onto things with her one good arm. She had this funny frog hop that she did instead of crawling, but it didn’t slow her down at all. She didn’t learn to walk and wasn’t potty trained until she was 4, but at 18 that doesn’t really matter.

Sarah is still a light in our lives and in the lives of many others. You will usually find her smiling or laughing, especially if you do something embarassing, like tripping, in front of her. We have so many stories about her that it would take hundreds of pages to tell them. Most of them would have you in tears from laughter.

There are still difficulties with Sarah. There are many things she is unable to do. She can’t ride a bike, scooter, skate or drive though she thinks she should be able to. She can’t walk long distances without a wheelchair because she tires out. She also can’t imagine saying hurtful words to someone on purpose. She can’t understand not trusting in God or denying His existance. She can’t understand that there are people who judge her because she’s different. Or that people wouldn’t love her as she loves them.

Lately Sarah’s emotions have been a roller coaster, and we’re all along for the ride. At times I get discouraged, wanting to fix things (I’m famous for wanting to be able to fix things and getting frustrated when it isn’t fixed instantly). I can remember being in a Bible study right after I got saved, I was 19. We were studying Job and discussing the trust that God had in him to know that Job would never deny God. I remember praying, you guessed it, that God would trust me like that. I joke about it and say be careful what you pray for because you might get it. But ya know, I wouldn’t change a thing. If it hadn’t been for Sarah I would probably be one of the most shallow Christians around, depending on myself and not on God. I learned that as long as I think I’m in control, I don’t depend on Him, I depend on myself. Today I know that God only gives me the grace to handle what comes at me, not for today, but for this minute. It’s not a day by day walk with Him, but a minute by minute walk.

In whom are you trusting? What if something happened to one of your children or your parents? Would you trust that God would sustain you? That He will carry you through? I pray that you will examine yourself and see exactly in whom you are trusting.