Splash Pad

Tonight we went to a Splash Pad for the first time in Butterfly's memory.

She ran in and out of the water playing and laughing and having a grand time.

I took a video, but haven't figured out how to edit it and don't want to put 6 minutes of video on here.

Right before we left, I noticed the water was spraying out in a five pointed star.

I thought that looked pretty cool, so I took a picture of it, too.

For good measure, here is a picture of FigNewTon's shadow.

Pretty neat, if you ask me. :)

Broken

Broken heart FigNewTon calls it "sad inside." That works, too. It is the overwhelming feeling of sadness that overshadows every other emotion and follows me through my day.

Broken dreams Not dreams for the future, because I have every faith that she will be OK in the end. It is the right now dreams. For her being 14 and enjoying this time in her life, rather than "being" seven or eight. Because she will never get this time back.

Broken record Because these things keep going through my head over and over again. But they are followed by another record reminding me of God's truth. Truth that says He knows the plans He has for us, plans for a hope and a future. Truth that says He can heal her.

I will be glad when the second record begins to overshadow the first. When I no longer feel so broken.

Thankful Thursday

What am I thankful for today?

• My church. I know that this is exactly where I need to be right now. It is home. There is no other church I could imagine attending while walking the path I am walking.
• That today is a good day.
• For a few hours without the girls yesterday. This went a long way to restoring my sanity. Thank you MissH and Mr.B. :)
• FigNewTon. The grace, wisdom, patience, perseverance and love she has shown this week. With her sister, and with other children I saw her interact with. While accepting correction. I am so proud of the beautiful young lady she is becoming.
• Butterfly. That she is alive, mostly, but also that she is trusting me so completely right now. All this is confusing for me. I cannot imagine how it feels to her.
• YOU. Those of you who read and leave encouraging comments. And those of you who pray for me and the girls.

So, would you like to join me and answer the question, What are you thankful for today? Copy and paste the code below into your post and leave a comment letting me know you did, so I can stop by and be encouraged by what I read. Or, if you prefer, just leave a comment here.

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A Good Day

Never before have I given a timeline of our day. Not since I have been blogging has a day like this one occurred.

Just after midnight, Butterfly wakes up to use the restroom and asks, "Am I downstairs?"

I simply answer, "No." We live on the third floor of an apartment building, not in a three floor house.

"Mom, the bathroom is backwards."

"Yes, it is." What else do I say? I know the house that she is remembering, thinking that this moment is that moment.

She goes to lay down and decides to lay on the floor instead of her bed. "This is not our carpet. Ours is softer. And it is the wrong color." I say nothing, just kiss her and let her go back to sleep. All that could be said can wait till morning.

I retreat to my room and am too overwhelmed to talk to God in words just yet, but I sit with Him, inviting His presence, because I need Him so desperately. Around 2:00, I know that any day that both of my children wake up is a good day. So, I go to bed expecting to have a good day. I know the things that the day will most likely hold, but I count it a good day nonetheless.

When I awaken, a sense of dread tries to greet me. I shoo it away, reminding myself that this is a good day, still really unable to cry out to God and still relying on His presence. FigNewTon wakes up and I tell her we will skip Sunday School to allow Butterfly an extra hour to sleep since she had a rough night. FigNewTon and I begin to get ready to go, taking extra time to curl her hair and mine before waking Butterfly.

When she awakens, she is confused, and stands looking around the room. "Where am I?"

"In your bedroom." The room she expected to wake up in was painted several shades of pink.

"The colors are all wrong."

Rather than directly addressing her statement, I ask, "Which color is your favorite?" She points to a purple wall. That is the color she chose. FigNewTon chose lime green.

I have to remind her several times to do basic things to get ready to go. She chooses a dress to wear, a pretty yellow one that matches the bows in her hair. I wonder how she knows what day of the week it is. But then again, FigNewTon and I are both mostly ready to go, so maybe it was deduction.

"Which toothbrush is mine?"

FigNewTon goes into the bathroom and retrieves it for her. This is familiar ground. I thought things were supposed to become comfortable as they become familiar. Rather than take the time to explain things to her or show her anything, FigNewTon fixes Butterfly breakfast and grabs both Bibles. These details can be dealt with later. She tells FigNewTon, "You are too big."

FigNewTon responds, "I'm OK with that. I can be too big."

I ask her to walk with me down the stairs, unsure if she is dizzy and not wanting to ask. These episodes are usually accompanied by dizziness. They are also usually accompanied by a recent bump to the head. I cannot remember her hitting her head, and I pay close attention to these things. She puts her arm around my waist and says in a confused tone, "Either you have shrunk or I have grown."

I smile sadly and say, "You have grown dear."

"Overnight?"

Rather than answer her question, I ask a question I know the answer to, "How old are you?"

"Eight." I don't tell her she is fourteen. I am not quite sure what to say or do or how to proceed, so I say nothing. Taking a step backward never seems to get any easier.

When we are almost to the car, I ask, "What grade are you in?"

She acts as if the question gives her a headache. She scrunches her eyes and thinks really hard and answers more in a question than a statement, "Fourth?" Again, I say nothing.

On the way, I ask her where we go to church, knowing what she is going to say and that I need to prepare her for her expectations not to be met. I simply say that we are going to a different church today and we will be there all day. I add that she is to call E's dad Pastor. As we are pulling into the parking lot, I tell her she doesn't have to call him Pastor if she doesn't want to. I don't think she called him anything all day. To the best of my knowledge, she didn't address anyone by name except E and Mrs.N.

During church, I have to remind her to be quiet and to sit with her knees together because she is in a dress. Both of these are repeated so frequently that I am not sure I heard the sermon. My mind and heart were otherwise occupied, as well. She sang the songs, but not as if she were engaged and singing songs that are familiar. Rather, she read the words on the screen while we sang.

After service, an announcement is made that the youth pastor and his wife are leaving, they have received a call to another ministry. The youth are going to lunch with them. FigNewTon goes. I don't see the benefit in sending Butterfly. There is not a flicker of recognition on her face when she sees them. Later, when she remembers who they are, she will regret this moment. She could not change it, but she will wish it had been different. You see, she loves PastorE and Mrs.P dearly. Lunch was a time for all of the youth to hang out with them after hearing the news. She was, at this time, unaffected by the news.

I feed her and lay her down to rest in a nursery. I take a moment to breathe and begin to prepare snacks for VBS. During the afternoon, I get a chance to talk to my friend, N. When N and I talk, it is usually in snippets as we go about the tasks that need to be accomplished.

I tell her I cannot imagine dealing with Butterfly's brain issues at any other church we have ever been a part of. This truly is the place we need to be. For a myriad of reasons.

I tell her what I have decided about the qualifications for a good day.

I talk some about Mr.R and how the songs affected me today. (Our focus at church this month is heaven.)

I ask, "How many times am I going to have to teach the same thing over and over again?" Butterfly had just needed instructions on modest behavior while wearing a dress. Specifically, not to play with the hula hoop where gentlemen could see her. This after explaining multiple times that she needed to kneel if she wanted to draw on the sidewalk with chalk so no one could see up her dress. These are things that she had internalized prior to the brain injury and had re-mastered since January.

Her response, "As many times as you have to. Remember, this is a good day." Now, that is a true friend. Someone who can hear what I have to say and remind me of it when necessary.

It is bedtime by the time we get home. The girls get a snack. Butterfly asks, "Where did we buy a zucchini?"

It is not completely dark, so I decide to show her the garden. She is filled with wonder and asks repeatedly, "Is this ours?"

FigNewTon and I repeatedly say, "Yes."

We go back inside and she kisses me before bed. She sees the Rubik's Cube that we picked up at a garage sale. She spent quite a bit of time trying to solve it yesterday. "Is this ours?" Her voice is filled with awe.

I take a moment, once again, to breathe and begin typing this out.

"Mommy, can you hold me?"

"Yes." A few minutes later, I ask, "What are you feeling?"

"Confused."

"Why?"

"Because nothing is like it is supposed to be."

I understand, but just in case, I clarify anyway, "You mean like the color of the bedroom?"

"Yes."

I remind her that I am still here and ask her to trust me that this is our home. She is quiet for a while and then tells me her sister asked her if she had her light bear. She stated she didn't know she had a light bear. I find it and turn it on for her. She is amazed. That she has it. That it turns colors. She falls asleep holding the bear while I am holding her.

So, by the definition I decided upon last night, today was a good day. And tomorrow will be, too. Then why do I feel like crying?

Snapshot Saturday

December 27, 2007

The girls were playing "King of the Mountain" on the piles of snow outside of Grandma's apartment. It snowed SO MUCH while we were there. FigNewTon had gotten to the top first and was celebrating. This picture was snapped right before the real struggle for the mountaintop began. She had NO CLUE Butterfly was about to get her. It was the funnest thing to watch them play together.

Today's Medical Technology

I have been thinking a bit today.

While FigNewTon was sick, I thanked God that we not only live in America, but that we live where we live in America because of the access to good medical care. While she was sick, good medical care was a must. Simply stated, it saved her life. So, often I thanked God that we live where we live during this time in history. Had it been even five years earlier, her chances of survival would have been minimal.

With Butterfly and all that is happening with her brain right now, there is really nothing that the doctors have been able to do. They can do brain scans or run other tests, but they can't fix anything. I cannot tell you how many times I have heard the phrase, "with today's medical technology." Because with "today's medical technology" they can see nothing wrong with her brain. There is a name for it and a list of symptoms that go along with it. And there is documented evidence from other people who died while still exhibiting symptoms that there is a molecular difference in the brain when someone is suffering from PCS. It is just that with "today's medical technology" we can't see it. We are all aware that there is something wrong, but just like before the development of x-ray's they could not see inside the human body, they cannot see what is wrong inside of her brain now. So often I am left with more questions than answers. And sometimes that gets unnerving.

And then I thought, "What would I do if it were 100 years ago or if we lived where 'today's medical technology' were unavailable?" Well, I would accept that all of her symptoms were because she hit her head and she either would or wouldn't get better and she either would or wouldn't live and that it was entirely out of my hands. I would live, day by day, thanking God for every moment that we have and every bit of progress. I would do whatever was in my power to help her. And I would love her where she is at. So, that is exactly what I have set my mind to do even with "today's medical technology." No more worrying or even wondering what will happen tomorrow. Because there are a lot of ifs and maybes that are scary. But right now I choose not to be consumed by them any longer.

Thankful Thursday

Today, publishing this weekly post is taking all that is within me. You see, my feelings are so far from thankful that it is really hard to get my thoughts in line. Today's post is truly a sacrifice and a thank offering to God.

I am thankful that Mr.R is no longer suffering, no longer in pain, and in the presence of Jesus. I am not thankful that I did not get to see him before he died. I am not thankful that he left a grieving widow and three grown grieving daughters. I am not thankful that he suffered for so long before he passed. And I am not thankful that I could not make the trip to go to the funeral.

I am thankful for Freecycle and my new bed! (I was sleeping on egg crates because the springs had busted through my mattress.)

I am thankful for rebates that translate into free school supplies for the girls.

I am thankful for "anonymous" tickets to the zoo that came in the mail the other day. (I am guessing you still read my blog, so thanks, TS :) )

OK. For this week, I guess that's it. Because now my mind has gone back to all of the things that I am not thankful for. I promise to be more focused and back on track next week. If you have it within you, leave a comment letting me know what you are thankful for or linking back to your Thankful Thursday post. Reading them always encourages me and I need all the encouragement I can get this week.

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A Good Man

Did you ever know someone truly wonderful? I did. And it took knowing he was going to die to realize just how wonderful.

In my last few years of high school, I made a friend, H. She had two younger sisters, K & J, which I never really got to know. But when things were hard at home, I would walk to the gas station and call H. H got busy as high schooler's do, and often her mom would answer the phone. Her mom would talk to me for hours, sometimes coming to get me if I was cold or hungry. Always ministering to me in love and directing me to God's love. Then I graduated and still called H's mom. After a few years, I realized Mrs.R was my friend. Recently, I realized she and Mr.R were so much more.

You see, after I was grown, Mrs.R came over and taught me how to care for my skin and wear make-up. They both showed up at the hospital when my girls were born. In fact, after Butterfly was born and I was so very sick, they were my only regular visitors. She is the one that came over and showed me how to diaper and bathe and otherwise care for my babies. She was the person I called when the girls had a fever. She was the one that I called when my own mother would say or do something hurtful. When I needed to cook my first turkey, I called her on Thanksgiving, several times, and she talked me through preparing that meal.

Whenever I would call, Mr.R would answer the phone. But I seldom talked to him, because I had issues with men. He was such a gentle person, so loving and kind, patient and forgiving. I would always just say hi and ask to talk to Mrs.R. Once, when Butterfly was really small, Mr.R picked us up from that same gas station and took us home, helping me to get in because I had been stranded without keys.

When I first separated from my ex-husband, Mr.R came over every day, sometimes twice a day, to help me learn how to work the wood stove and make sure the girls and I stayed warm. They even bought a cord of wood that first winter. Ever so often, I would need the advice of a man, and I would purposefully talk to him. Over the years, I got to where I trusted Mr.R, a big feat for me. I got to where I respected him and loved him. But I did not realize this until it was too late to really show him.

I live 1200 miles away from them now. Calling is hard. Visiting is right near impossible. At first, it was because FigNewTon was too sick to travel. Then I broke my foot and Butterfly busted her head. Before we were completely better, he got too sick to really have company. I have talked to him only a handful of times in the last year. But still, that was more than before. Now whenever he would answer the phone, I would talk to him for a few minutes before asking to talk to Mrs.R, always being aware of how tired the conversation was making him and cutting it short if necessary.

They had been sweethearts since they were teenagers. Mrs.R is going to miss him, I know. As are H, K & J. So am I. I am sure every person who had the privilege of knowing him is, too. The world lost a good man this weekend. A very good man.

Butterfly

Butterfly passed out this morning while I was curling her hair. She stated that everything was going black so I had her sit down. She felt better, stood back up, and passed out. EKG and CT of brain both looked normal. She is not anemic or diabetic. Afterward, she developed a severe headache and stayed dizzy until 2:00 p.m. when she laid down to rest. She seemed a bit less alert than usual as well. She napped 2 hours and woke up feeling a bit better, still more symptomatic than a normal day, but a bit better than before the nap. She stated that she keeps forgetting it is Sunday.

There are basically two things it could be. I am believing that it was a "normal" fainting episode and she is fine. It is the general consensus among the doctors, and it is the only one that lines up with my belief that she is going to get better.

The other alternative is bad. Very rarely, when a person has post-traumatic concussion syndrome, they will pass out and nothing is found to be wrong initially. Then they die unexpectedly. It is as if all systems just shut down. Even with second impact syndrome, this is still rare. And yet, the doctor chose to inform me about it. If this is the case, there is nothing they can find "with today's medical technology" until it is too late.

I used to think MRI's were great because of all they can show us about the brain. Now, I am wishing tomorrows technology was here today.

Snapshot Saturday

April 30, 2005

We were at a Single Parent Family Retreat. One of the perks of the weekend was family photos. It was windy and we were facing the sun. The photographer was just getting started in his own business. I had to work really hard to get the girls to smile for the photos. The photographer hadn't mastered that skill yet. I helped the mom before us coax a smile out of her kids, too. They gave the photos to us on a CD. I didn't have a computer at the time, so it was a few years before I even saw them. We were moving the next day and I still had so much to do. The only reason I went on the retreat is that I drove the bus and the church had specifically requested me knowing I was a single mom.

Thankful Thursday

What am I thankful for today?

• Time to talk uninterrupted to a dear friend (a whole hour!) that I haven't talked to in about a year. We have spoken. We have chatted. But we haven't talked. Boy did it feel good!
• Love ~ for my girls, from my girls, from unexpected places, for others regardless of how they act, but mostly from God because His love is perfect and truly unconditional, all consuming, always there making all other acts of love possible
• Peace ~ the kind that is not dependent upon life being peaceful, but rather brings peace to the midst of chaos
• The ability to be patient when my girls grate against my last nerve, when things don't go like I expect them to, or when other people act in an irritating manner. But mostly, that other people somehow find the grace to be patient towards me as I slowly become who He wants me to be.

So what are you thankful for today? If you would like to join me and publish your own Thankful Thursday post, just copy the text in the box below and paste it somewhere in your post with a link back here to mine. And please leave a comment to let me know you are participating so I can be blessed by reading your list.

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Enjoying ~

~ the fruits of our labors.

Zucchini, cucumber, and radishes.

There was also one green bean.

Added to stuff already in the fridge,

and it made a scrumptious dinner!

FigNewTon decided before beginning her garden that she would give 10% to the local shelter. We have harvested exactly 10 items. So, for now, they get one lone radish, with a promise of more to come!

Snapshot Saturday

Christmas 2007

It is amazing how much joy a simple pair of sunglasses can bring.

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.

Thankful Thursday

What am I thankful for today?

I am thankful that we are mostly over the flu. FigNewTon is doing great, Butterfly is good, and I am better. I am thankful for the medicines that helped to speed the process along, the telephone that enabled me to talk to the doctor, information that helped me to understand what we were dealing with, and time to rest and recover.

I am thankful for simple pleasures like a stress ball, play-doh, paper crafts, puzzles, books, and movies. And for more modern conveniences like dishwashers and Internet. I am thankful that I can decide which of these things fill my life and which to live without.

I am thankful for freedom and the choices that it affords. I am thankful for the men and women who secure that freedom, now and in times past. I am thankful for living in a democratic country and therefore having a say in that freedom. I am thankful that I can make choices that are different from my neighbor, maybe even from the majority, and still be free from recrimination.

I am thankful that life is not fair. We often talk about fairness only when something seems absurdly unfair to us. But life is definitely not fair. I deserve so much worse than I have. Fairness can be equated with justice. I much prefer mercy and grace.

I am thankful for God, for the comfort I have just in knowing Him. I am thankful for the scriptures that help me to know Him more. I am thankful for other believers to encourage me along the way. I am thankful that God is unchanging, no matter what life dishes out. I am thankful that each of these things is minor in comparison to eternity.

"For our light affliction, which is but for a moment, works for us a far more exceeding and eternal weight of glory; while we look not at the things which are seen, but at the things which are not seen– for the things which are seen are temporal; but the things which are not seen are eternal." 2 Cor. 4:17, 18

So, what are you thankful for today?

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If you would like to join me and publish your own Thankful Thursday post, just copy the text within the box, and paste it somewhere in your post, linking it back here to mine. And I would really appreciate it if you left a comment to let me know you are doing a Thankful Thursday of your own, so I can be encouraged by your list.

Summer Loves

My friend, Autumn, asked the question today on her blog,

"What are your summer loves?"

Here are my answers:

Going to a ball game.

Flying kites.

Ebelskiver's

Hanging out with friends.

Carving a watermelon.

Gardening.

Time with Butterfly while FigNewTon was away at camp.

Getting a pedicure.

FigNewTon coming home!

Still Sick

FigNewTon is better. Her fever has been gone for a few days. And all of her other symptoms are gone, too. Except that she is still tired.

Butterfly is still sick. Coughing, achy and fatigued. The fever is low grade, comes and goes. She is almost better.

I never got hit very hard with it, but then the doctor anticipated me getting sick and put me on an antiviral. So, the intensity of mine is less, but the duration is not. Tired, achy, coughing, nauseated, with only a low grade fever. That too is typical for me. I catch everything, but seldom have a fever with viral infections.

The doctor gave me some information on the type of flu he thinks we have (we will know for sure by Wednesday). At first, the thought of it was really scary and overwhelming. But as I sifted through the information, I began to thank God. And here is why:

1. Because of her compromised immune system, FigNewTon was hit the LEAST severe of all of us. Unlike a typical virus, this one somehow uses the bodies immune system against itself, therefore being more severe in the healthy and strong and less severe in the weak and sickly.


2. They expect this virus to become more virulent (read deadly) in a few months. We will be IMMUNE to the new strain.


3. If there is ever a good time to be sick, this week was it. NOTHING was on the schedule. Although, I would really like to go to the laundromat.

So, I thank God that we got this virus now instead of later. And that we are all recovering from it and will be fine.

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Post Note: FigNewTon has her blog up and running. And for those of you who didn't know, Butterfly has one, too.

Snapshot Saturday

Tonight...

Waiting...

For the fireworks to begin.I hope everyone enjoyed their 4th of July celebrations today.

Today's Thankful Thursday

What am I thankful for today?

• medicine, doctors, telephones, emergency rooms, and every other thing that can help my girls get over this current illness
• movies, games, and other quiet activities to engage the girls while they are sick
• God ~ He is so faithful to encourage me, so capable in His care for me, so consistent in His love and forgiveness ~ He is everything I need
• people
• answered prayer ~ I don't always like the answer I get, but God's consistency in answering is comforting ~ and I know that His ways are best, even if I don't understand it in the moment
• holidays and the freedom that this upcoming holiday represents

So, what are you thankful for today?

The new Thankful Thursday button is here!!

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If you would like to join me and publish your own Thankful Thursday post, just copy the text within the box, and paste it somewhere in your post, linking it back here to mine. And I would really appreciate it if you left a comment to let me know you are doing a Thankful Thursday of your own, so I can be encouraged by your list.

About Thankful Thursday

Thankful Thursday is not about what I feel. It is about what I do, what I choose to do. In the scriptures, God asks us to be thankful many times. Sometimes, He calls it a sacrifice. And I would agree, sometimes being thankful is a sacrifice.

The first week, it was just a whim. It seemed like a good thing to post on a Thursday. And then after a few weeks, I noticed a change happening in my day to day life that I attribute to being thankful and articulating that consistently here. Sometimes, I am hurting so deep inside that all I can come up with is surface things. Sometimes I can't even come up with the surface list, so I focus on only one good thing and expand upon that idea. Sometimes, it is a pouring out of what I am thankful for from deep within me. Or truly a sacrifice to offer thanks to God. But whatever is behind my Thankful Thursday post on any given week, it is a choice to be thankful.

The scripture that I am trying to implement in my life goes like this, "In every thing give thanks: for this is the will of God in Christ Jesus concerning you." (KJV) I don't pretend to be thankful for everything that happens in my life. But I choose to be thankful in the midst of things. I am not thankful when my car breaks down, but I am thankful for the opportunities to show my faith or for God to show His mercy and provision in the midst of it. I am not thankful that FigNewTon lived for five years sick, but I am thankful for the person and parent I became because of it. I am not thankful that I broke my foot, but I can remember feeling thankful that my broken foot allowed me the opportunity to stay home with Butterfly after her accident. I am not thankful that she has a brain injury, but I am thankful for the beautiful person that is emerging. And who am I to know whether or not the two are connected.

Thankful Thursday posts are not a time to pretend that everything in life is good. They are just to allow me to have a different focus, if only for a moment. And take time to express appreciation for something ~anything~ in my life.