Spoonie Update 7/27/16

I wanted to share what all has been happening with the girls and their health but haven’t had a lot of time to write. I made this video today on the way to Rachel’s Physical Therapy appointment. That’s about all of the time I have right now. If you have any questions, please leave a comment and I’ll get back to you as soon as I can. 

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. 

 

$5 Goodwill Challenge & Fireplace Decor Tour — Fall 2015

Beginning last January I began to dip my toes into the waters of YouTube. It took a while for me to actually get up the courage to post a video after thinking about it for months. One of the first people I began following was Hillary from My So Called Home . I found her when I was searching out planner videos (yes, that’s a thing and it’s addictive). Every season Hillary has a $5 Goodwill Challenge. The challenge is to go to Goodwill, other thrift stores or garage sales, spend $5 or less and then incorporate what you purchased into your seasonal decor. I have wanted to participate since I first saw it, but with the impending move last fall and then the remodel since we have moved, I haven’t been able to participate. I am so excited to finally be able to join in the fun!! 

Now, I did spend more on my decor than $5. Mainly because all of my decorations are still in storage. ūüėČ  But I did find some things from Goodwill that fit the parameters of  the challenge. I’d like to take you on a tour of my fireplace and share with you what I upcycled and bought new. I hope you will enjoy the tour here and on YouTube and that you will be inspired to try something new.   photo Fall20fireplace201_zpsh52pexqe.jpg

I created this mercury glass mason jar by using Krylon Looking glass spray paint. It was really easy. I sprayed the jar on the inside with the paint. When that was dry I sprayed a mixture of white vinegar and water on the outside and immediately sprayed on the paint. Then I dabbed the water drops with a paper towel. I had never created a mercury glass affect before and was quite pleased with the result. I purchased the flowers at Michael’s for .79 each and have 3 stems in the jar. The paint was a little pricey- $8 for a small can- but I was able to paint 3 items with it.  So for the whole vase and flowers I spent about $5.

 The candle next to the vase is 2 votive candle holders with one inverted. The one on the bottom has a bigger mouth and a slightly bigger base which gives it good stability. If I were going to have them down where they could be knocked over I would have glued them together, but since they are up high I haven’t. Not having them glued has come in handy when I am turning off the LED candles. I purchased the candles at Walmart. The smaller ones are 2 for $2.97 and the larger one is $2.97.  I purchased the votives at Dollar Tree for $1 each. For each of the raised candles I spent $3.50. 

The garland that is draped on the mantle is actually made up of 4 garlands from Dollar Tree. I thought they looked a little sparse, so I twisted them together to get a fuller look. I spent $4 for the garland on the mantle. 

This pumpkin was one of those pumpkins we’ve probably all had at some time or another. It was orange and I’m sure it used to have a top. I actually like it better without the top and stem for some reason.  I tried to make this a mercury glass pumpkin, but found out it doesn’t work on something that isn’t clear. I liked the affect anyway and now and glad it is slightly different from the mercury glass pumpkin. It doesn’t look quite so matchy- matchy (that’s a technical decorating term in case you were in doubt ūüėČ )

I did really well at Michael’s this week when I was finishing out the decor. They had a 40-50% off sale on all of their fall decor. This sign was among the many wonderful decorations on sale. When I went in the store I had one idea of what I wanted, but when I saw this sign, I knew it was perfect. It was originally $9.99 but I only paid $6. The sign sat a little lower than I wanted so I bought a Styrofoam rectangle at Walmart and some brown felt. I used straight pins to attach the felt to the block; it isn’t super obvious and puts the sign up where it needs to be. The votive holder is another one from Dollar Tree.  

This pumpkin, which is also topless, was the clear glass type. I bought this one at Goodwill for $1.99.  I spray painted it using the same method I did with the mason jar and was really pleased with how it turned out. 
 

This birdcage was our first thrifting  purchase once we moved to north Louisiana.  We got it at Goodwill for $5. The LED candle in it is another one from Walmart, which was $2.97 and the leaves are a garland from Dollar Tree. I like that the bird cage can be changed up for different seasons. It’s also not too large and the size fits well on the mantle. 

I thrifted this basket a while back in Texas. It is one of the few decor pieces I had out of storage and it fit perfectly on the hearth. It is filled with Dollar Tree pumpkins that I spray painted cream and purple ( $6 ), two metallic pumpkins that I bought at Michael’s for about a dollar, and a bunch of flowers that were from Michael’s or Dollar Tree which were also a dollar. The silver pumpkin is resting in a cloche type glass lid, which I purchased at Goodwill for $1, and it has some Dollar Tree leaves in it. The basket is wrapped in two garlands from Dollar Tree. 

I knew that I wanted pumpkins to sit on this side of the hearth but was unsure what I would find when I went shopping. I was so excited when I got to Michael’s and they had exactly what I wanted and for 50% off.  I never would have paid full price for these, and I am so in love with them!! Can you fan-girl over pumpkins?? The largest one was originally $30, and I paid $15 and the smaller one was originally $20 and I paid $10. The green glass candy dish was from Goodwill and I paid $2. The dish contains metallic painted acorns that I got from the Target Dollar Spot for $3. 

So here’s my breakdown:

Goodwill: $12
Dollar Tree: $19
Michael’s : $38
Target: $6
Candles: $7.50
Paint: $16 out of pocket but I have 2/3 remaining of both the cream and the purple paint 

All in all I’m really pleased with how things turned out. It was fun to have a vision for a space and to have it work out the way I envisioned it. 

Have you decorated for fall yet? Do you ever thrift shop for home decor? Why or why not? 

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 Fresh Start

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This month marks 9 years since I stepped into the blogging world. My writing has been hit or miss, but that’s because  I’ve always tried to put my family’s needs ahead of my blogging. Rachel and I have been doing a lot behind the scenes to freshen up my blog (Rachel has been doing all of the heavy lifting, I just throw my ideas out to her). I’ve been thinking a lot about where I want this blog to go and what other avenues I want to pursue. I think I’ve come up with a plan, we’ll have to see if my life cooperates with it. 

I’ve had another blog, Joyful Homemakers, that I started several years ago. The plan was for it to be a blog that the girls and I would do together. The girls are pursuing their own blogs and youtube channels and it just makes more sense for them to keep their content on their sites. Since I don’t want to have two blogs Rachel has moved all of my content from that blog to this one.  I hope to be posting at least twice a week, though I don’t have my schedule quite firmed up yet. I will be sharing about my life, recipes, how-to posts, shopping trip hauls and if and when I begin the youtube channel I’m considering I will also share those here. I will be sharing similar content on my youtube channel that I do here. 

I’ve been thinking a lot about what I want to share and the purpose for this blog and future youtube channel. My desire is to be an encouragement to other women in their lives, relationships and running their homes. I have done a lot of thinking about pretense over the last year or so and want to be real. Sometimes real is rough around the edges, it isn’t always pretty and sometimes it’s just plain hard. I think that we have created a society (at large and in our churches) that promotes wearing facades and keeping up appearances. I hope that you will come along with me on this journey that is life, and be real with me as well. 

You might want to take some time to look around the site as my homemaking posts are interspersed between the original posts from this blog.   If there is a part of my life that you’d like to know more about, please ask. If you’re interested in how we juggle several different and some quite restrictive diets, or what our day looks like, let me know. What types of how- to posts would you be interested in?

Since I’m considering a youtube channel I’d love to hear what you enjoy watching on youtube (please no cat videos ūüėČ ). If you have a favorite channel, post a link to it and share what you enjoy about it. I will do another post about some of my favorite channels in the near future.  

What Did You Accomplish?

I don’t know about you but at the end of my day I often look around and feel as if I haven’t accomplished anything. Today was such a day. As I looked around my kitchen and saw dirty dishes and counters I felt defeated. I knew there was no way I would get what I wanted done. Then and idea struck me. I started running through a list of the things I had accomplished and was really surprised at all I had done. Just so you know, we operate on a pretty crazy schedule around here due to chronic Lyme disease, a child who has been having mental issues, and a husband who works crazy hours. Last night (well really this morning) I didn’t get Sarah to sleep until nearly 4 am and I was still awake until almost 6 because of my Lyme. At noon I was rudely woken up by Sarah loudly arguing with her sister (mind you, she’s deaf and doesn’t speak words, but she uses her voice really well. When you are sound asleep this sound reminds you of the scene in Jurassic Park when the T-Rex is chasing the jeep and Jeff Goldblum is shouting, “Must go faster! Must go faster! Sarah is the T-Rex).

Yeah, I pretty much responded the same way the people in the jeep did. After being jolted awake, I am often not at my best. My sweet girls got me my first cup of tea (a cup for me is a 20 oz. travel mug) while I had a little discussion with Sarah. These discussions happen many times throughout my day. Just ¬†imagine you have a over active 3 year old in the body of a 26 year old and you’ll sorta get the picture. Gene leaves for work at 2:30 so there were some things I had to get done before he left.

This is my list of what I accomplished today. I encourage you to make your own list of things you have done, I think you will be surprised at how much you really did accomplish. This is in no way me bragging, far from it. I have about 1 million and 1 things that are incomplete that needed to be finished weeks ago. But, such is my life. I am learning to do what I can do and not sweat it if I can’t.

So here was/is my day. It’s 12 am as I’m writing this and I still have at least 2 hours of work to go. Just for clarity, right now we have people on 4 different diets due to health reasons, so often my kitchen is more like a diner.

Woke up  Startled out of restful sleep

Morning Cuppa¬†Technically afternoon, but who’s counting

Made Hannah’s breakfast

Made Gene’s lunch for work

Made Sarah’s lunch

Made Chicken stock in the crockpot (it is still simmering and I LOVE that smell!)

Made Hannah and Rachel’s lunch

Ran errands- HEB, Walmart and Dollar Tree (did you know that they have $1 digital timers? I love timers!!!)

Watered the yard (this took repeated trips outside to move the sprinkler)

Made Sarah & Hannah’s meatloaf & Sarah’s squash

Researched information and e-mailed it to a friend

Laundry

Replied to 5+messages

Sarah in bed (only sorta, she won’t be asleep for hours)

Made the rest of us regular meatloaf

Downloaded e-books

Wrote this blog post

Still to do:

Make homemade laundry detergent

Make coconut milk

Dishes (I seriously doubt those will get finished!)

Clean kitchen counters and stove (not looking promising either)

Through out all of this there many times I stopped to correct or counsel Sarah, visit with the girls, and drink many cups of tea. The reality is, I will always have something unfinished, and my To-Do list will never be completed. Why do I keep beating myself up for not being able to do the impossible? I am going to stop chastising myself and accept the reality that is my life. I will always strive to do better, but I am not going to beat myself up over it. How about you? What did you accomplish today? Do you beat yourself up over what didn’t get done?

 

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.