Snapshot Saturday

May 4, 2012

End of Year Program

Today

Today I am breathing in and breathing out.  This is often more purposeful than one might believe.  When I get overwhelmed, I often say, "breathe in, breathe out" because it reminds me that I can do whatever lies ahead one moment at a time.

Today I am thankful for those people that surround me, encourage me, and direct my focus back to God.  Whether it is by an email, a comment, a call, or a card; those people that God has allowed to be in my life help me make it through each day. 

Today I am aware of the little blessings that comprise our days.  This whole week has been surreal.  I have been waiting for the diagnosis of what is wrong with Angelica, conscious of every moment we live and breathe without a diagnosis hoovering over our heads.  Yet, I am also aware of how heavy that waiting can be.  Every time I am greeted with the weight of the situation, I remind myself to be aware of this moment and every blessing that it holds. 

Today I am cleaning and sifting and sorting.  This feels like an unending task.  At the end of April, we were told to empty five of the seven closets in our apartment to prepare for crews to come in and install new heating and air conditioning.  At the end of May, they finally finished in my apartment.  This entire month has been consumed with appointment after appointment and I am still trying to get everything back in its' rightful place, minus one very needed closet which now houses the heater. 

Today I am proud of my daughter who is becoming more and more capable of running a home each day.  Miracle is a huge help to me.  Today she cleaned the kitchen, did two loads of laundry, and straightened their room.  She is also better cook than me.  Today she made pancakes and bacon, a simple meal but so very good.  Some days the meals she prepares are better than any you could get at a fancy restaurant. 

Today I am overwhelmed by the ways allergies have impacted our lives.  Angelica has a lot of allergies.  In addition to the ones I listed before, she is also allergic to herring, oysters, asparagus, beans, mushrooms, onions, spinach, tomatoes, peas, whole grain flour, pears, rhubarb, tea, cocoa, baking powder, maple, and corn.  In case you weren't aware, corn is in everything.  Corn oil, corn meal, corn flour, corn syrup, corn starch. 

Today I am thankful for medicine.  I am especially thankful for those medicines that slow the progression of Lupus and the ones that keep the pain at bay.  I am also thankful for the things that Dr.D has prescribed for Angelica to help her skin and scalp to heal.  However, Angelica is also on her fourth type of breathing medication and we still can't find one that works for her. All inhalers sold in the United States now use a corn based propellant and since she is allergic to corn they make her breathing worse rather than better. 

Today I am listening to music from my favorite radio station online.  It is a blessing to have that music playing in the background of our day even though I can't pick it up on the house radio and especially because I can't put music on my blog right now. 

Today I am preparing for all of us to go to nationals.  That feels good.  I don't know for certain that everything is going to be OK and that Angelica will be able to go, but I am beginning to plan in that direction. 

Today I am waiting for the official word from the neurologist.  It will be sometime next week before she will have news.  She wants to compare all scans of A's brain and have a colleague do the same before getting back to me.  I know that the preliminary report shows no drastic changes and that is good. 

Today I am preparing to have an online garage sale.  I live in an apartment so hosting a traditional garage sale isn't practical.  There are local online garage sale groups that I can post my stuff on, though, so I am preparing to sell a bunch of stuff.  I am also waiting for some people to come pick up what I posted on Freecycle. 

Today I am eagerly anticipating a visit with my friend Autumn.  She and her girls will be here next week.  It has been too long since we've been together. 

Today I am planning for our fourth of July fund raiser.  I have been gathering things and making sure we have all we need.  We are planning to go to an old friend's house to spend the day. Their house is on a parade route and the girls will sell lemonade to raise money for nationals both before and after the parade.  Then we will all be able to just hang out and enjoy each other's company until the fireworks start at ten.  It will be a long day but worth the expenditure of energy for both me and Angelica. 

What about you?  What did today look like for you?

I Can't Pray

Well... OK... I can pray... it is just that my prayers keep contradicting each other.  

I pray that God will show us what is wrong with Angelica.... and then I think about whatever specific test she just had and realize what the answer to that prayer would be and I pray, "Please, God!  Don't let that be it,"  effectively rendering my first prayer useless.   

Monday when Angelica had the lumbosacral MRI, I prayed that God would reveal what was wrong so that the doctors could fix it.

Tuesday when they told me that she didn't have a tethered cord, there was a feeling of relief quickly overtaken by dread.  

Because if it's not a tethered cord... and since we have already ruled out heart and lung and adrenal gland problems... then the only thing left is something else neurological in nature.  

So, Dr.D did the prudent thing and ordered a brain and upper spine MRI.  

And today during the MRI, I prayed that we would finally know what is making Angelica sick, deteriorating a bit more each day, unable to enjoy living or really do much of anything.  

But then I immediately begged God for this not to be it because if they find something in today's MRI, it would be bad.  There's no way around it. 

So then I just breathe in and breathe out and thank God that He knows the beginning from the end and holds Angelica and me and all of us in His hands and ask that His will be done, more as a reminder to me than a prayer at all.

Billions of Beads

When the girls were little, they really liked to make things with beads. Especially Miracle. She talked about what she was making with beads all the time.  So much that one year every gift anyone other than me bought for the girls was beads of some kind. Over the years we have accumulated billions of beads. Last time Angelica was hospitalized she thought that it would be fun to do a bead project. That was a problem because the beads weren't sorted in a manner conducive to gathering them and taking them to the hospital. She decided that she would re-organize them. So today when her brain got too muddled to focus on biology they started sifting beads. They are excited about making something with beads like they haven't been in a long time.

My New Favorite Author

Dee Henderson has been my favorite author for quite some time. Whenever I need to get lost in a book to take a break from life's stress, I usually pick up one of hers. A few weeks ago, though, I wanted a different author, a book that I had never read. I picked up Black at the library, by Ted Dekker. Then I read Red, White, and Green.  Now I am reading Three.  All very good books. Especially if you need a break from a difficult reality for a moment or two...

It seems between doctor offices and hospital stays, I have quite a bit of time to read lately. Who is your favorite author, just in case I need something good to read in the near future?

Pool Party!

 On Friday, all of the homeschool high school kids got together for a pool party.  They had so much fun.  We have one Senior, four Juniors (including my two), two Sophomores and five Freshmen.  It's a nice looking bunch of kids, for sure.  

Simply Sunday

Phillipians 4:7

And the peace of God, which surpasses all understanding, will guard your hearts and minds through Christ Jesus.  

Snapshot Saturday

March 31, 2012

Nebraska Fine Arts Festival

For the rest of the story, check out this back-dated post.  

All Too Familiar

Navigating another wing
of another hospital

Meeting another doctor
for another set of tests

Becoming all too familiar
with the unfamiliarity of it all

Answering questions that I
never expected to be asked

And hoping that this
does not become familiar as well

Written almost two years ago regarding my then current struggles that we now know was the beginning of Lupus.  Yet, right now, it applies because of my sweet Angelica and all that is wrong with her.  Just since June 1, she has spent two days in the hospital and had sixteen appointments with nine different doctors.   Now all that I am hoping is that she will get better.  

If I Had My Life To Live Over Again....

On her blog, Diedra invited us to ask her questions about her life as a pastor's wife. I asked a question and she graciously answered it and then she asked her readers a similar question. If you had your life to live over again, would you change any of it? That question is hard to answer.

 I gave my heart to Jesus 19 days before my 18th birthday. For all practical purposes, that is the beginning. Most notable things in my life before that were a result of the choices of others. That moment is when my life choices started. That choice I would not change for anything. However, at first glance, most choices I made after that I would.

 When I gave my heart to Christ, I lived in a foster home. Nineteen days later, I signed myself back into foster care so that I could finish high school. If I could change this choice, would I? NO. That was a good choice.

Then I followed a boy to a college I had no business attending. To do this, I had to sign myself out of the care of the state and acknowledge that I would be on my own. This seemed like a good choice to a bullheaded teenager who had never known love. A year later, I knew it wasn't. If I could change this choice, would I? NO. If I had stayed, I probably would have finished college and my life definitely would have turned out different. But, I wouldn't have become a nanny and learned a different way of parenting. So, chances are, I would have repeated the pattern of my mother. Leaving college and becoming a nanny made me a better person, a better mom. I wouldn't change that for anything.

Fast forward a few years and I reconnected with a boy that I had known in high school. This should have raised a red flag, but it didn't. Within five months, we were married. Within nine months, I was pregnant and frequently bruised. Within 2 1/2 years, I was a single mother of two babies. If I could change these choices, would I? NO. I think the reason is obvious. I wouldn't have my girls. I wouldn't change that for anything.

Those are my major life choices that put my life on the path it is now. There are other, smaller choices that I regret, but I wouldn't change them either. I am not where I hoped to be at 38 40. I am not where I hoped to be after loving God for 20+ years. I know that some of my choices grieved His heart. Because of this, I learned of His grace. I learned that His love is unconditional. I learned that He values me simply because I exist and not because of what I do. I wouldn't change that for anything.

 re-posted from here

The Girls' Room

Today, in under an hour, we rearranged the girls' room. M and I had rearranged it a few days ago but she didn't like the outcome. I had told her that if she could come up with a new plan that would work, we could do it again.

So, after the first appointment of the day and before the second, I decided to motivate M and help her achieve her goal of rearranging the room yet again.

At about 11:30, we measured the room and everything in it.  And then we went to this site that I found on Pinterest and plugged all the information in.  So much easier than the graph paper we used to use!

By 12:15, the room looked like this:

Pretty good for 45 minutes!  The heavy lifting was done in under an hour with no mistakes, no re-do's and no headaches! Hopefully after tomorrow's doctor appointments the girls will have time to fine tune and completely finish their room.

I Have A New Love...

 

... either that or a new addiction...

because Pinterest is awesome!!!

Joy

Another re-post, actually two for the price of one!

What Does It Mean To Have Joy?

It is mentioned several times in scripture and yet I never see a clear explanation of what it is.

Here is what I know:

It does not come easy and it is not a natural state of being. It is a gift from God, a fruit that His Spirit living in us produces. It is not something we can create on our own.

Here is what I don't know:

What is it? What does it look like played out in life?

Galatians 5:22 says, "The fruit of the Spirit is love, joy, peace, patience, kindness, goodness, and self-control." Did I get them all? That was from memory.

Rather than set these gifts on the shelf or expect them to magically become part of the fabric of who I am, I have spent many years choosing to develop and exhibit these characteristics. I am not there, by any means, but I am closer than I was. Joy, however, continues to elude me. I don't even begin to comprehend what it is.

I am well acquainted with sadness and depression. They are so much a part of my life that sometimes I wonder if they are woven into the fabric of my being. I am not sure if joy, unlike happiness, can share space with these things. Fear cannot share space with peace. Anger cannot share space with forgiveness. Bitterness cannot share space with love. So maybe joy cannot share space with depression.

Also, please don't tell me it is a choice. I can choose joy all day every day and yet not know what it is or what it looks like. Then what have I chosen but obedience? I still don't have understanding. So, in effect, I have told God that I want what He offers, but I don't know how to get it. I can choose to not be depressed, but that in no way guarantees that the depression will go away.

When I first gave my heart to Christ, people told me to "just forgive" all of the many people who had hurt me. I didn't know what forgiveness was, what it looked like, or how to give it. I had never experienced it except for the moment Jesus forgave me. I just knew what it wasn't. It wasn't anger or bitterness. It was closer to love and granting it was somehow tied to gaining peace. Those same people told me depression was a result of my sin, my unforgiveness.

I think figuring out what joy is will be much the same as learning about forgiveness. I expect none of you will be able to answer my question and I will spend the next portion of my life seeking an answer from the only One who can. That is OK, just please don't expect me to live like I have it figured out.

Joy Revisited

Some of the responses to my question about joy came from friends who never comment on my blog. They call me or email responses. They respond in a way that allows more two way communication. I used to be one of those people, before I had a blog, and sometimes still respond privately when a friend has so openly revealed a struggle. But, I think the subject deserves revisiting. I think adding to this conversation, between me and you, those of you who only know me here, is important.

CN said, "I don't think you are alone in not knowing exactly what Joy is. I do know that Joy and Happiness are not the same thing. I do believe that you can have Joy and not be happy. I haven't thought about it before, but now that I have, I believe that you can have the joy of the Lord and still be upset and depressed. I don't think it is a feeling. Hmmm, I think I want to study this some more..." and, "something else came to my mind about what I believe Joy is. I believe it is a security. It is a knowing...that when things are going good and even when things are not, there is still that 'security' or 'knowing' that we have promises from our Lord and Savior that we can stand on and hold onto..."

CN added, "Also, it feels to me like someone has been judging you when it comes to joy." That is true. Originally, it was the same people who judged me for not understanding forgiveness. More recently, it is just me. I think that since I have been walking with God for 20 years I should have a clue. My thinking on that isn't right, I know. I am glad CN said that because I don't think I would have realized I am judging myself. God hasn't put this requirement of having it all figured out after 20 years on me, I have. So, I took off that cloak and began to breathe again.

PK said, "Warren Weirsbes definition. joy—that inward peace and sufficiency that is not affected by outward circumstances. (A case in point is Paul’s experience recorded in Phil. 4:10–20.)"

That got me thinking. What if joy is not as closely related to happiness as I have always thought, as the world thinks? What if joy is more closely related to contentment? Because the definition that Warren Weirsbe gave and Paul's experience sound more like contentment than happiness. It sounds more like a choice than an emotion.

What if joy and depression are not even distant cousins? The depression, I know, has a physical component, as does the condition that causes the depression. Something happened in my brain a long time ago in response to trauma and now my brain processes things differently. I can learn to compensate. I can choose to live out the fruits of the Spirit. I cannot change the way my brain is wired. Only God can do that. Maybe one day He will, but if He doesn't I know it is for my best.

For now, I am content to know that maybe I understand joy more than I think, but I will keep studying.

Just Enough Rain

Just enough rain. Plants cannot thrive or even survive without rain. But too much rain is bad for them as well.

Just enough rain. That is a different kind of thought. In life, we often compare troubles to rain. And yet, troubles are something we would prefer to avoid altogether.

Just enough rain. Just enough troubles to make us strong. Just enough pain to keep us reliant upon Jesus. Just enough heartache to teach us compassion.

Just enough rain. I never really thought of it that way before. Thank God for the rain that He allows into my life. My prayer for each of you is that you will recieve just enough rain.

Originally posted here.

Lessons I Learned From The Lion King

Shadows, shadowy places, and shady people should be avoided. God calls us to live in the light. The blessings of God are there for us to be enjoyed.

Our actions affect everyone we come into contact with.

Some of the most memorable lessons a parent can teach a child do not involve anger and punishment, but love and gentle guidance. On that same note, children need to be protected from the evil in this world.

Family has more to do with relationship than it does with birth and blood. Autumn has reinforced this belief many times in many ways over the last seven years.

Sometimes it takes time spent in the desert, separated from others that you rely on, to mature you. God uses this time to prepare you for His plans and purposes. If you want a biblical example of this, consider Moses in the book of Exodus.

Sometimes it takes someone else to show you the truth about who you are. It is easy to get stuck seeing who you were and not see how much you have changed.

The mistakes and heartaches of the past should be learned from but not run from. Neither should you live there. Live in the present. My favorite scene is this one.

Secrets are often uglier than the truth revealed. Things remembered are often clouded by our perceptions, beliefs, and things others have said. There is freedom in revealing the truth.

Some things are worth fighting for.

Some people never need to be trusted or given second chances. This is not to say that you should hold on to anger, hurt, or unforgiveness. Rather that wisdom should be used when deciding whether or not to grant trust and second chances to those who have repeatedly hurt you.

New life can come from ashes and ruins. God is truly in control.

Re-posted from here.

God-Sized Dreams

We all have them. Or at least we HAD them. Can you remember yours? I can't. It has been pushed aside by the now and buried by the cares and concerns of day to day life for so long that I don't even remember what mine were.

My thirteen year old wants to compete in Russia in 2014. She has the raw talent. She has the drive - and most of the time it is focused correctly. She has the commitment and determination. She doesn't have the finances. It is an expensive dream; approximately $15,000 a year and that cost will only go up as she improves. She has written a letter requesting sponsors and sent them to every local business and is sending them to every business that advertised during the Olympics on TV. She has a few. She needs more. Something as simple as money could get in the way, and she knows it.

Angelica, now 15, no longer wants to compete at the Olympics.  That dream was stifled when she turned 14 and realized just how little time she would have for anything other than work and skating and school... she decided that skating was important but not that important... she wanted to have a life outside of the rink and have the opportunity to enjoy being a kid.  Her current focus is sign language.  She has been to a national competition for the last two years and is going again this year.  She plans to become an interpreter for the deaf when she finishes college. 

My fourteen year old wants to be a missionary in Africa. Actually, we know the country, but I have been told it is not safe for people already working there to mention the country in that context, so we just say Africa. She has had this dream since she was two. Yes, two. Before she made a commitment to Christ, she knew she was called. Her dream seems even more Olympic-sized now, since 08-02-08, the day of her accident. She is never without adult supervision. She must keep a consistent eating and sleeping schedule or she could pass out. She has constant headaches, daily dizziness, ever present fatigue. She is learning to add. Yes, I said add. But her heart still beats for Africa. Maybe hers would be better labeled a God-size dream. And it will take a miracle of God for her to get there, to be healed and strong enough to live the life of a missionary.

Miracle, now 17, is no longer sure that God is calling her to be a missionary.  In fact, she's not sure where she's headed at all.  I keep telling her that is OK, she has time to decide.  Either way, the obstacle that was in her way when I originally posted this is no longer an issue since her brain is completely healed.  

I think I am going to ask God to remind me what my Olympic-size dreams are. I am going to ask Him where He wants my life to go, who He wants me to become and how I can get there. It is time to remember and dream again.

After posting this, I remembered my dreams.  One, to finish college and become a counselor, I may tackle when my girls go to college.  I've got a lot of healing to do first, but I'm working on that. Another that God reminded me of has sifted to the back and keeps threatening to be forgotten again.  No matter.  If it is truly God's dream for my life, He will bring it to pass in His time.  With that dream, I often remind myself that Sarah was 99 when God fulfilled His promise to Abraham. 

What about you? Do you have an Olympic-size dream? Or do you need God to remind you what it is? Let me know and I will pray for you as we strive to reach our dreams.

Today

Today I am breathing in and breathing out.
Today I am enjoying air conditioning.
Today I am filling out paperwork that is insanely complicated.
Today I am thankful for two new skirts that a friend gave me.
Today I am preparing to go camping with my girls.
Today I am running to and from appointments.
Today I am tired of the struggles and determined not to give up.
Today I am praying that God would give Angelica's doctors supernatural wisdom.
Today I am resting in the promise that God is who He says He is.
Today I am refusing to be consumed with worry.
Today I am breathing in and breathing out.

Similar post here.

Not Surprised

Originally posted here. Truthfully, I can't remember what insignificant thing was happening then that I needed this reminder. I think it may have been that the car needed to be fixed and I didn't have the finances to fix it. It really doesn't matter. God taught me a fabulous lesson that day and reminded me of that same truth when I was reading this today. He is no more surprised by what is going on now than He was with what was going on then. He is capable. He knows the beginning from the end and holds me in His hand. He is faithful and will see me through even this. 

Through FigNewTon's illness, through Butterfly's TBI, through my singleness, through all of the ups and downs that have comprised my life to this point, I was able to face this morning with constant assurance that this did not take God by surprise. It did me. But it did not Him. It really doesn't matter what "it" is this time. There are several "its" in a lifetime. 

This one today caught me completely off guard, yet, as I went for my morning walk, I had the constant refrain in my brain that it did not catch Him by surprise. And then I stopped in my tracks and contemplated that for a moment finally settling on a prayer that went something like this. 

God, I know this did not catch You by surprise. I know You knew this was coming all along. I didn't and I am not sure how to handle this. But I know You can handle it. So I trust You. 

And then I started walking again, basking in the peace that comes of knowing God can handle whatever life throws my way.

Update About Angelica

Hello Everyone!

We have managed to stay out of the hospital for just over a week!!!!  In addition to that, we have learned a lot about what is not wrong with Angelica, though we still don't know what is causing the problems.  

She saw Dr.D, primary, 4 times last week.  The TB test that the hospital started was negative.  He checked her cortisol levels 3 days in a row.  They were all within normal ranges.  All other blood work also looked good.  He ordered a CT of the chest focusing on heart and lungs.  Beyond that he is stumped.  He doesn't know what direction to go next.  

On Monday, she saw Dr.T, pulmonologist.  She ran several tests including one for cystic fibrosis.  That of course was normal.  She does have asthma that has gone undetected and is beginning an inhaler to provide comfort.  That's not the problem but Dr.T is hoping that by proving some relief to her lungs that it may make the real problem easier to detect.  The CT showed nodules on the lungs as expected but it was more clear that they are residual from a previous illness.  She would like to biopsy Angelica's lungs to be sure, but doesn't feel the need to put her under just for that and will piggy back it on the next procedure that Angelica has.  

Today she saw Dr.C, cardiologist.  He was stumped as well.  He is convinced that whatever is causing the problems is most likely not cardiac in nature.  Her EKG's and echos all show good heart functioning.  When they analyzed her breath, it showed that her circulatory system was working properly to get oxygen to all parts of her body.  

The only other system that can explain the symptom of blood pressure dropping when she exercises is neurologic.  She will see Dr.H, neurologist, next Tuesday.   I don't think that is the problem simply because she hasn't developed any other neurologic symptoms.  Dr.H has a brilliant mind and is good a pulling information together.  If anyone has a chance of figuring this out, I think it is her.  

She has been having some problems with her vision blurring and is scheduled to see Dr.M, opthamologist, on Friday.  There are a couple of things that could go wrong with her eyes if she has Marfans.  We will know for sure if she has that after she sees Dr.S, geneticist, next Wednesday.  It has also been suggested that she see a rheumatologist.  That appointment isn't set up yet.  That is mostly to get another head trying to figure out what is wrong and because Marfans tends to cause some pain in the joints as well as when connective tissues become stretched.  

That's about it for now.  

Thanks for the prayers.  Oh!  One more piece of amazing news!  Dr.C is a Christian and asked if he could pray for Angelica today.  He asked God to heal her body and to give her entire team of doctors guidance in the meantime.  That brought Angelica more comfort than anything else he had to say.  So now there are at least two of her doctors that are praying for her!  

Blessings to you all!

Why Blog? - Take 3

As the title indicates, this is the third time I have asked myself that question here on the blog.  The first two times were here and here.

Obviously, I was absent for a long time.  At first, I was tired and didn't know why.  Then I was learning to adapt to the current struggles in our lives.  I was adjusting to life with lupus these last two years, even before I knew that was what was wrong.  It is hard to put "maybe's" in such a public place, even if no one is reading it.  Although Miracle's TBI is finally healed, this last year and a half of healing were really difficult on her.  And of course there is Angelica's mystery illness.  It may be the heart, it may not.  The doctors are actually looking in several directions frantically trying to find what is wrong so that she can begin living life unlimited again. 

Being rather OCD CDO (It has to be in alphabetical order, you know), I feel compelled to always catch up on reading other people's blogs once I get behind.  With my limited energy that isn't practical anymore.  That stopped me from blogging for a while, too, because every time I sat at the computer I would read blogs and then be too tired to write.  

Being somewhat CDO also means that I feel I have to post things when they happen or at least back date them when I do post them.  This often leaves me feeling paralyzed when I start to blog because so much has happened that I don't know where to begin.  I think for that reason I may begin doing a back dated post a week while I go through old photos.  Similar to Snapshot Saturdays, but I don't know if that is what I will call them.  

Being sick sometimes means that nothing noteworthy is happening.  Or that thoughts get lost in my mind before I can get them on the screen.  These are things that I have had to adjust to as well.  

Right before I stopped blogging, I also stopped doing the memes.  I stopped because it seemed like that was the only time I was posting.  I have several ideas swirling in my head.  I don't know which, if any, I will begin doing.  Thankful Thursdays I probably won't pick up.  It served its purpose which was to produce within me an attitude of thankfulness.  Snapshot Saturday became more of a burden than a joy, but like I said, I might pick that up again at least for a time.  I have also considered doing a weekly or monthly camera dump, a post with just pictures and minimal explanation.  I did Memory Making Moments for several months.  I really enjoyed that and enjoy looking back over those posts even now.  It was a lot of work, more than you would expect, so I am not sure if I will do it again but  I am considering it.  I have thought about Make a Difference Monday, which I may still do.  Obviously that's not an original idea, but I like the idea of both crediting those people who have made a difference in my life and regularly attempting to make a difference in the lives of those around me.  I've also thought about starting something like Simply Sunday, similar to what Debbie does.  What I know is that I found that very refreshing and it helped to focus me on what really mattered each week.  The only thing I am concerned about there is that it might become more of an obligation than a joy and if it does or if it becomes distracting for me, I will obviously stop.  

The one thing that has stayed constant is that blogging is for me.  It's my journal and scrapbook and information to those that love us from far away all rolled in to one.  It's an easy place to put all of those things together.  Then there is the truth that because my energy is limited, I can't participate in festivals or visit other blogs often so reciprocity (and therefore traffic) is at a minimum.  Somehow that is OK with me.  It reminds me that this blog really is for me.  Hopefully I will stay true to that.  

So there you have it.  These are my reasons for coming back to blogging.  

Journey

For those who are survivors.

For those who are fighters.

For those who have fought and lost.

For those who love the people referenced above.

Re-posted from here.  I think we need to go back to that park.  There is so much hope and healing that comes of visiting a place like that.  I think we as a family also need to be reminded and acknowledge that what is happening right now is also part of a journey - not a place that we are stuck, but rather somewhere we are passing through.  

Hope

When I was a baby Christian, I thought hope was restored relationship with my mother.

And then hope became having a good marriage.

Next hope was the baby the doctors said I would never have.

Then, hope became my marriage staying together. The marriage that had already weathered an affair and ongoing abuse.

And when I thought all hope was lost, it was given back to me in the form of a second life I carried within me.

Even in the breakup of my marriage, I thought I understood hope.

Then my second child got sick. Near to death sick. Five years long sick. And hope  was begging God not to take her.

Then hope  was somehow coming to grips with the reality that He knew what was best.

Hope became simply not letting go of God.

And she was healed. I thought I understood hope.

Her sister was in an accident and suffered a brain injury. Hope was that she would get better.

But hope is none of those things.

Now, hope is knowing God won't let go of me. No matter what. He is holding tight. Even when I no longer have the strength to hold on to Him.

That is hope.

I wonder what hope will look like next.

Hope is now knowing that what God has done in the past, He can surely do again.   


Originally posted here.  

The Lucky Ones

When FigNewTon was so very sick, and it was all I could do to keep my head above water, another friend was fighting cancer for the second time, a co-worker was looking to me for strength because she was facing cancer; when all of this was happening I realized we were the lucky ones.

You see, all of this was precipitated by death. Another friend had a child die unexpectedly. One lost both a dear friend and a brother to cancer in the same year. But we, the group of us facing death and yet living life, became more appreciative of that life, more focused on the little things, the mundane moments.

I had always loved my girls and spent time with them. But I began loving spending time with them. I began seeing the value in the every day moments.

I was also forced to reevaluate, to determine what was really important. And to let go of what wasn't. Girl Scouts, a fabulous activity, a great learning avenue, went by the wayside. So did Awana's. And every other thing that was not necessary for daily living. Because I was faced with two very real and present realities.

One, every activity that FigNewTon participated in put her at increased risk for infection and sapped her of energy. And I don't mean made her tired. I mean took every ounce of energy away from her so that she slept for a full day after any outing. Two, the doctors had told me to enjoy the time I had with her. What, exactly, does that mean? It definitely doesn't mean to keep pretending that everything is fine and is going to be fine.

So, I eliminated everything that put her at risk. And everything that got in the way of enjoying the life she had been given.

I had always parented the girls so that they would grow up to be good people. But my perspective changed. I began parenting them with two objectives. One, that I would not regret how I had parented them if they died tomorrow. Two, that I would not regret how I parented them if they outlived me.

In the end, I really am one of the most blessed. Because I was given the gift of almost losing a child, but she is still with me. And we, the doctors and I, expect her to stick around for a while.

You would think I had learned to appreciate my children enough.

But then in August, I had a different kind of wake-up call. A reminder that it doesn't take a protracted illness to lose those we cherish. Rather, it could all be over in a moment.

And yet, again, I was given the blessed gift of that child still living, breathing. Enjoying every moment I have been given with her.

We, those of us faced with death and still living life, we are the lucky ones.

A needed reminder.  Re-posted from here.  

Deja Vu

A re-post. 

I am not sure I am breathing right now.  I can't seem to see clearly through the circumstances to believe that she will be OK again. 

This not breathing, not being OK, is all too familiar. 

I am sad. Hoping that things turn out OK and the doctors find what is wrong sooner than later. 

I'm scared. Scared in a way that I haven't been in a long time. Scared in a way that defies the faith that comes from seeing God bring us through so many things in the past. 

And I'm angry that this is happening, that I feel like we can't catch a break, that as soon as I adapt to one struggle, another seems to slap me in the face. 

But mostly I am holding my breath hoping not to drown in the midst of this storm and holding tight to the buoy of Christ Jesus that is keeping me afloat. 

Breathing
I have been quite sad all week.
And I couldn't pinpoint why.
And then today, it hit me.
I am grieving.
Not about what is,
because what is
is pretty good.
FigNewTon is strong
and healthy enough to be away at camp
for not one, but two weeks.
And of course I miss her.
But I have had several thoughts over the last two weeks
thanking God that this missing her is not permanent,
but rather is just her learning, growing, and having fun.
We lived for so long with FigNewTon sick,
thinking that she was going to die.
And then she got better
simply and completely because
God performed a miracle.
I never let myself grieve while she was sick,
because I had to be strong and keep it all together.
And I never really grieved after she was better
because she was well, better.
And I never really thought about it until today.
When I was so sad,
seemingly for no reason.
Then I realized that I am sad,
not for what is,
but for what was,
what could have been.
Last week in the mail,
I got a very normal postcard
from her pediatrician.
I haven't gotten a postcard
since she was seven.
It said that her blood work was normal.
Not normal for FigNewTon,
but normal like every other kid normal.
So, now that she is completely healthy,
I let myself grieve for what was
and what could have been.
All the while thanking God
that it is not and is not going to be.
Dr. D told me a year ago
that I could breathe again.
I think I am finally breathing.

C.H.A.O.S.

A re-post.  Updated with new information added throughout.

Ever feel like your life is in chaos? As stated in my about me, I do on the best of days.  And the technical details of my life are chaotic. Any mother could say the same. Because as a mother you are responsible for coordinating the schedule of every person in your family. A single mom, military wife, or wife of someone who travels with work has a bit more responsibility. And a single mom doesn't get the negative of dad coming home disrupting the schedule or the positive of him being able to pitch in when he is home. So, all in all, I have long believed that it balances. My life is not harder or easier than most other moms. Just different. Some things are harder. I have no one to ask when I need help. Some things are easier. Where there is no expectation (Honey, could you take out the garbage?), there is no frustration. So, the chaos is not attributed to my singleness. 

What then? FigNewTon was sick for a long time. She still sees the doctor about once every three weeks, if all is going well. And all has been going well for about a year now. We had a few bumps, but once every three weeks feels good. For a long time, it was three or more a week. She is back to all of her normal activities and acts like any other twelve year old girl I know. I didn't talk much about what she was going through while it was happening. So, I may never divulge more here. Unless it becomes current again.

FigNewTon being healthy had just become a reality and had not completely sunk in to my psyche when Butterfly got the brain injury. At first, this did not mean a lot of doctor appointments. We had a few spattered in. Meet the neurosurgeon, who she doesn't need to see any more because there is no need for surgery. Thank God! Everyone just expected her to get better.

But she didn't. Meet the neurologist. Actually, it wasn't meet the neurologist for me as it is FigNewTon's neurologist. But meet the neurologist for Butterfly. Meet the neuro-psychologist. So, now we are down to approximately six appointments a month. Plus two for FigNewTon, that usually don't coordinate well with Butterfly's. This is better. But it feels all too familiar.

Miracle's brain injury is completely healed.  I say completely.  There are days that she struggles, if she doesn't eat well or doesn't get enough sleep.  She always will.  But in the day to day, life as we know it, she appears healed at every turn.  She no longer has uncontrollable outbursts of anger.  She is doing grade level work and doing it well.  She is also doing it much more quickly than earlier in the year.  Most of her memories are back in the correct order and when she stumbles upon one that is filed incorrectly, it takes minimal effort to get it back where it belongs.  She will probably always require a semblance of order and routine in her life and may never be the type of person who can burn the candle at both ends, but that's not good for anyone any way.  She is more aware of the risks associated with any activity than most people her age, but that comes from managing her symptoms for so long. She is as capable of living life as a "normal" 17 year old child.  This is new, and as with any other adjustment, even the good adjustment is creating a bit of chaos.  

Just the sheer number of doctor appointments can make life seem chaotic. As the mom, I must make sure that the information is getting transferred from one doctor to the other. Because sometimes it doesn't. The reality of Butterfly not functioning like herself feels chaotic. And all too familiar.

Miracle seldom sees the doctor any more.  Angelica and I see doctors all too often.  We know what's wrong with me.  Lupus.  And possibly Chron's.  (More on that later.)  We don't know what's wrong with Angelica but we are feverishly trying to figure it out before she gets any worse.  We are currently looking at the heart, lungs, and adrenal glands but as stated so frequently right now we have more questions than answers.   She has seen the doctor three times this week alone.  Tomorrow, she will get her 10th needle poke in under a week.  

Trying to be an advocate for what she needs at school, with an administrator who feels the need to completely understand and have concrete proof, in a school that doesn't have individual education plans or the means to set them up. This is new chaos that I have never had to deal with before as FigNewTon is homeschooled and was during her illness. Homeschooling Butterfly again is beginning to look appealing. Definitely less stressful than the alternative. But, for now, I don't think it is what she needs. That could change next month.

Miracle is no longer going to school.  I began homeschooling her shortly after making this original post and haven't regretted it for a day.  It is exactly what her brain needed to heal and now that she has a choice, she has decided that this is how she wants to be schooled for the remainder of her high school career.  Not having to advocate for the children at school, and not worrying about missed days due to illness and doctor appointments has been a relief from some chaos this past year.  I am so glad that both of my girls embrace homeschooling like they do.  

Every other aspect of my life is mostly like that of any other mother. So, I guess it is the illness and injury that each of my girls (and I) deal with that makes life chaos. But I have found a way to ease the chaos. At least inside of me. It doesn't eliminate the outer chaos, just makes it easier to handle internally. Here is my secret:

Christ

Having

Authority

Over

Situations

Sounds simple, but not always easy to implement. It gives me the strength to face the chaos. Because I am not doing it alone. It is no longer resting on my shoulders. It belongs to Jesus Christ. And I know that He can handle it. I don't have to. So, inside, the chaos is replaced by calm.

Untitled Post

I realized the other day when I posted a quote from someone else's blog, that I am not blogging because there are so many conflicting emotions inside of me and yet I feel as if everything I need to say has already been said here.  So I decided to go back to the beginning and read my posts, re-posting them and explaining how they reflect life and opinions now.  I re-read this post today.  

Obviously, that post was about Miracle not Angelica.  Which reminded me that though I have updated Miracle's condition not that long ago, in the midst of the chaos and doctor visits for Angelica and I, I haven't yet told you all the fabulous news that we believe her brain is completely healed!  It was actually on the eve of Angelica's heart cath that I realized this.  You see, I was talking to a friend that M was going to stay with and she asked what to expect as far as Miracle's behavior.  I paused a moment and said to expect a normal almost 17 year old child.  That simple.  And in that moment, all of the progress that she has made in the past few months rushed through my brain and I knew that God had completed the healing that He began in her!  

This week Angelica has already seen Dr.D twice and will see him at least two more times before the week is over.  We still have more questions than answers but I am confident that God will work all of this out for good.  

Jeremiah 29:11 

"For I know the plans I have for you," declares the LORD, "plans to prosper you and not to harm you, plans to give you hope and a future."

A Reminder From A Snapshot

Since Autumn first posted this, it has been re-posted several times.  I've done it here and here.  Miracle did it just the other day.  

But I am once again in a place that I need to be reminded of the miracles and faithfulness of God.  Both girls depicted in the photo have grown and matured in ways that I don't think Autumn or I could have imagined.  Both girls depicted in the photo are living miracles attesting to God's love and faithfulness.  Health is evading Angelica again.  I am just as scared as I was before.  So I needed the reminder. 

Two Types Of Parents

"I've learned there are two types of parents.  One type is not better than the other, or more wise, or more emotional... they simply evolve through their life experiences.  There are the parents who wake up every morning with the expectation that their children will be healthy... and there are the parents who wake up every morning hoping their children will have a good day."

Taken from here.

Passing Time

We know nothing more than we did when we came in.

That's not entirely true.

A few more things have been ruled out but we haven't learned anything about what is wrong.

The acute symptoms that she was admitted for have subsided so that is good.

We'll go home sometime today and wait for the results of the last set of tests.

Once Again

I'll let you know what I know when I know.