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! 

She doesn’t have a sticker!

For about the last year my week has consisted of taking us to the chiropractor twice a week. At first it was just Caroline, then we added Hannah, and in a surprise move to us all, Rachel decided to go. After the first of the year we added Sarah and myself. We are blessed with a chiropractor who is a Christian, who is kind, compassionate, and always looking for ways to help us. 

I know we have all had those Murphy’s law types of days and that’s how things were going for me today. Sarah’s shoes were lost, and things just kept happening that caused us to get out of the house 10 minutes later than we needed. Traffic went well and we were only 7 minutes late for our chiropractor appointment. At our chiropractor’s office that isn’t really a problem because it all evens out because of how he sees patients. He has a system reminiscent of an ice cream parlor. When you walk in the door you sign in, then you proceed to the waiting area and take a number and then wait your turn. When it’s your turn you go into the cubicle that has no door and he adjusts you. Afterwards you go and stand on a vibrating table thingy (I still don’t know it’s proper name) and then you’re done. Since this February the girls (Hannah, Rachel, and Caroline) have also been doing a Light and Sound therapy after their adjustments which takes about 20 minutes. So in all we are usually there from 1 hour to an hour and a half. 

That’s how things go on a good day. Today was not a good day. When we walk in the door the office manager informs me that we aren’t on the books for today. This puzzles me because just last week I set up repeating appointments so that I didn’t have to worry about it anymore. Apparently either the guy who set it up or the program has a glitch. We go ahead and get our number (we take one number for all of us because he sees us as a group and that’s what he told us to do) and take a seat. Mr. Murphy is visiting the chiropractor today as well. He has 2 of 4 employees out and is also covering for his partner who is out of town. Needless to say, things are taking a little longer than normal.

When it’s our turn we do what we always do and pile into the cubicle sans Rachel. She stays in her wheelchair right outside the doorway. If you are unaware, Rachel has had to use a wheelchair exclusively since February. Sarah pops up on the table first, always eager to get her adjustment. Then Caroline goes. In the last few months she has multiple sublexations and partial dislocations that he has to work on. Monday she had 9 ribs out. He works on her and she goes off to Light and Sound. Next it’s Rachel’s turn and I wheel her into the cubicle. She talks to him about what’s going on and then gets on the table. When she’s done getting an adjustment I wheel her back out and she waits nearby so that when I’m finished I can take her to Light and Sound. She has injured her left shoulder and has a possible torn rotator cuff which makes using her wheelchair difficult. 

While I’m laying on the table and he is adjusting my back I hear someone being very loud saying, “It’s none of your business!!” repeatedly. A look of confusion goes across my face and he tells me not to worry about it that he’s happy Caroline is angry with this man. I’m at a total loss. Thoughts are flying through my head and I can’t understand who she would be this angry at (I’ve never heard her this angry) and why. As I sit up so he can do another adjustment he tells me that a man said something about Rachel. Then it becomes clear. You can say anything to Caroline, but don’t mess with the girl’s family! 

By the time I get out of the cubicle Caroline is in the bathroom upset. Since the bathroom door is in the waiting room I restrain myself from knocking on the door to see if she’s OK. Instead I went to the desk to fix the appointment issue. When Caroline came out she looked as if she was ready to cry. I talked to her and got the rundown of what had happened. She had gone into the soundproof room for Light and Sound but her headphone battery was dead, so she came to the desk for another one. While waiting for the office manager to finish up with another patient she overheard this man and woman talking quite loudly (they were about 15 feet from her and about 10 from Rachel). At first they were complaining about how we only had one number. We aren’t worried about that because we’re only doing what the doctor told us. But then they moved onto Rachel. The man started saying that we didn’t have a handicap sticker on our van  (has he been stalking us or something?) and there were proper procedures to go through and since we didn’t have a sticker on our van, Rachel wasn’t really disabled and shouldn’t have a wheelchair. Because ya know, you aren’t disabled unless you have a sticker. Yes, he seriously said that loud enough for everyone there to hear it. The doctor told me he was happy that Caroline was giving him a piece of her mind because he does/says this type of thing to patients all of the time. 

After I talked to Caroline about what had happened I went over to the man and tapped him on the shoulder and asked to speak to him. Now at this point I didn’t know he had actually put his hands on her during their conversation. Apparently he thought he was playing “Little Bunny Foo Foo” and bopped her on the head. Not cool. Like I said, I didn’t know about this then; she was too upset and didn’t think to tell me. I’m calling that God’s providence! He lies repeatedly about what he said, changing his story every time. I tell him he owes my daughter an apology and he gives the best non-apology apology I’ve heard in a long time. He then tries to touch her again, and she promptly knocks his hand away and tells him not to touch her. After this we leave and go home. Rachel and Caroline were so stressed they couldn’t even do their Light and Sound treatment.

I don’t know about you, but when I see someone in a wheelchair the first thing I think about usually isn’t whether or not they have a sticker on their van. I don’t ask them to prove their disability to me. I don’t question whether or not I think they are disabled enough to have a sticker on their van. But apparently many people have nothing better to do than challenge people on their disability or hidden illness. I have a friend who has a sticker and has Lyme disease. Someone keyed her van for parking in a handicapped spot, with a sticker. We don’t have a sticker- yet. But we also don’t park in handicapped slots. Sometimes this causes us problems like trying to get Rachel back in the van because a car is parked too close to us. That’s not their fault, I don’t get angry at them, we just work out a solution so we can get her back in the van. 

I want to be clear that we don’t think confronting people is the right thing to do all of the time. But there are times it is necessary, this was one of those times. People act as if anger is always wrong, but it isn’t. Scripture says, “Be angry and sin not.” Eph 4:26 There are certain things we need to be angry about and bullying someone is one of those things. 

I know this is long, and thank you for sticking with me. There are so many crazy things happening in this world today. They are all really just a symptom of a lost and dying world. In our family we have a #1 rule- and it’s pretty simple- “Do unto others as you would have them do unto you.” That covers just about everything. Instead of judging whether that person is disabled enough, stop and think about the hidden things you may not see. There are a myriad of hidden illness out there. Show the same love, compassion, and empathy you would want someone to show you. And to quote another Bible verse, “encourage one another and build each other up”! I don’t think we can go wrong in doing either of these.

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.  

A Break in the Storm

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We are rejoicing that there is a break in the storm that has been in our lives for the last year! The Lord has been so faithful! I don’t want to give the impression that He is faithful because the storm is breaking, He was faithful when the storm was at it’s worst. He was there to calm the stormy seas that were about to topple us, not by removing the storm, but by helping us through it.

Sarah has been on the SCD diet for almost a month now and she is showing great signs of improvement. Since I first wrote about putting her on the diet I have done more research and made further changes. One of the things we have eliminated is all dairy. Apparently dairy can work like a narcotic on the brain of an autistic child. I can believe it. Since we have taken her off of cheese she has behaved like an addict about it. We finally had to duct tape the cheese bin shut so that she would not be able to steal it before we could get to her. In the last few days we have had to remove eggs as well. We were suspecting that they were causing some issues and I did some research on them and found out that many who are negatively affected by dairy and gluten are also affected by eggs. This article was very interesting on the subject.

In the last week it is as if a fog has lifted from her brain. She is alert and you can see clarity when you look into her eyes. She will tell you what she wants and answer questions (sometimes). She is much more attentive and is paying attention to things. She has become interested in her surroundings and is actually focusing on movies, coloring and conversations. For the past year she would just sit stimming for most of the day seemingly staring into space. We still have a lot to overcome. If you ask her what she wants, needs or is upset about her first response will be, “I don’t know”. If she initiates it though, she has very precise desires. I found that out on a recent shopping trip. Her favorite color is yellow and she wanted a yellow hand towel to match her bath towel. I was fine with that, but then she started getting towels of every color of the rainbow to put in the cart. It took everything I had and a few tears on her part, to get out of there with only 2 towels.

We want to thank all of you who have been praying for her over the last year. It means more to us than you can know. We still covet your prayers as we now have to go through the stage of re-establishing boundaries and getting her on a schedule and getting some semblance of normalcy in our life. I’m sure there will be times of regression, they are to be expected. Today I feel more confident in her prognosis than I have all year. We are so thankful for the Lord’s provision and direction in all of this.

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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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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.

Recent Life In Our House

Well, it’s 2 am and I am watching Fellowship of the Ring with Hannah, Rachel & Caroline, and listening to Lindsay cough uncontrollably in her bedroom.  In the last 24 hours the girls have had about 6 breathing treatments for their asthma, we have done several steam treatments tonight, countless doses of medicine, and hot tea by the gallon.  Sarah, the child that though she has special needs is rarely sick, even has an upper respiratory infection.  Gene seems to be getting over his URI, and I hope it stays away for a while.  Me, well, I’m not sick, I’ve just been running like crazy trying to keep up with everything that needs to be done (and quite honestly, I’m not succeeding).  I have started about 5 blog posts, which are currently waiting to be finished.

The opening to this post isn’t very cheery, but in all honesty, it’s not as depressing as it all may sound.  The Lord is teaching us all a great deal through this trial, and for that, I am very thankful.  Our holidays, while not full of activities, parties, and excitement, were full of meaningful times and expressions of love for one another.   For Christmas it is our common practice to have the girls draw another sister’s name, and they are given a certain amount of money to buy that sister a gift, or gifts.  They look forward to this with great anticipation, not looking forward to what they will get, but toward what they will give.  They spend countless hours in thought and preparation of their gift.  This year something spontaneous happened that surprised me.  The girls individually began spending their own allowances to buy small things to make for the sisters whose names they didn’t draw.  I know of many people who eschew gift giving at Christmas because of the belief that it causes greediness and the desire to get more and more.  In our family I have found the opposite to be true. The girls are appreciative of the gifts they receive, but generally have trouble even telling you what they want as gifts.  We have tried to nuture in them a desire to be cheerful givers whenever the opportunity arises, and we have seen good fruit from this thus far.December 31st, was our 25th wedding anniversary and Gene planned a big surprise for me.  On Wednesday evening, December 17th, Gene told me that first thing Thursday morning we would be heading out for a trip to San Antonio.  I have wanted to go for years, and love history, so this was the perfect surprise for me.  I was so excited to get to go to the Alamo after hearing about it for so many years. This may sound strange, but it was all I could do to not start crying as I entered the building for the first time. The realization of what had taken place there was heavy upon my heart.  The grounds of the Alamo are beautiful; it is hard to believe that they are right in the center of the city.

After the Alamo we went and checked into our Bed & Breakfast before going to the Riverwalk. It was a beautiful little B&B right on the river.  It was so peaceful and beautiful. It was quite overcast the two days we were there, which gave the city an unusual feel.  The river was beautiful, as was the boat ride down it.  As I was riding on the river, in the fog, under all of the bridges, it felt as if I was in London.  Once the sun went down and all of the Christmas lights came on, it was even more beautiful on the river.  I felt as if I was a child in a wonderland of lights.  After walking along the river for a while, we then at dinner at Boudro’s.  The food was amazing, and the bread pudding was a great end to the meal.  It was nice to eat on the riverwalk, watching the people as they walked by.  After we walked a while longer we went back to the van.  Gene knows how I love to take pictures, so he took me by the Alamo, so that I could get pictures at night.  It was an amazing site to see it with the lights illuminating it’s historic walls.  The next morning we ate breakfast at the B & B and then drove through a historic district nearby.  After a quick stop at the Buckhorn Museum downtown, we headed home.  The trip was wonderful for me, as it gave me a much needed break from the holiday rush.  It was nice to spend a day not thinking about all that I had to do to finish preparing for the holidays.  I don’t know that I have ever been so completely able to lay my thinking and planning aside.

San Antonio Album 1

San Antonio Album 2

San Antonio Album 3

Lindsay went to Little Rock the afternoon we returned from San Antonio for the wedding of some friends.  While there she was able to stay with Gene’s sister and to see her cousin’s new baby.  She had a wonderful trip, but picked up a bug on the return plane ride.

We had a very subdued but nice Christmas enjoying a lot of time together, with us all playing the new Wii together when the girls were up to it. Gene surprised me, and the girls, with a very nice present for Christmas. He had taken the girls shopping, and they picked out several nice things for me, not knowing about the secret gift.  He surprised us all with a top of the line Kitchen Aid Professional mixer.  The girls were as excited as I was to receive it.  We didn’t wait long to try it out either!

Since we had already celebrated our anniversary on our trip, on the 31st we just went to our favorite pizza place, New York Pizzeria and the mall.  Gene didn’t make it until midnight (I think he was beginning to get sick at that point) but the girls and I did.  We went outside at midnight to watch the fireworks, which lasted quite a while.  The next day Gene’s brother, Guy, came for a visit. We had a really nice visit while he was here, though the girls weren’t feeling quite up to snuff.I haven’t been taking a lot of pictures as of late, but I did get a chance to Friday at Gene’s office.  Lindsay was taking pictures inside for a brochure and the website, so I went outside to take pictures.  Gene’s new office is located on an acre of land in old Katy, in the middle of a neighborhood, which provided a few flowers and such to take pictures of around the office.

These are a few of my favorites.

It was fun to watch this little fellow flit from flower to flower. He almost looks as if he could fall in on his head and get stuck!

One of the things I have come to appreciate about nature photography, is the details that pop out at you that you didn’t even notice while taking the pictures.

I have also come to see many things I would have overlooked before, such as this flower.

These little fellows were none too happy that I kicked their mound to see if they were home. Yes, they are fire ants, but none of them got me…. mwahahaha.

This tiny fellow was almost invisible, until I got down really close to take this picture. Isn’t his little red self cute?Well, it’s after 4 am now.  Fellowship has finished, they have taken another round of breathing treatments, and they have started Two Towers.  I hope they are feeling better before it ends, but we’ll have to wait and see how that goes.  You are pretty much caught up with everything going on here.  I hope to begin posting more often, but only time will tell.