Tuesday, November 19, 2013

The Unamed Father, I feel you man! Lord, I Believe, Help Thou Mine Unbelief

Sometimes this road is bumpy.  I am often reminded of a passage in Mark 9 where the guy I call the "unamed father" brought his sick child to Jesus in hopes of him being healed.  Lord I believe; help thou mine unbelief.  Blatant honesty there and I feel the dude.  On the real I do.  It has been hard for me to navigate with the shaken faith. I have trusted God for provision and I have trusted His patience. What I have doubted even though I try not to is the idea that I am as important as say Thomas was or as important as my children are. It is hard to admit, but sometimes I feel like I'm just here to take care of people.

Don't get me wrong. I'm glad I could be there for Thomas.  He was my heart.  He outlived his prognosis by over 3 years. And I like to think God allowed me to help that happen.  I also adore my babies and I love being their mother.

I loved Thomas, but I never got to really feel important to him or like I was first after God with him because of his illness. Our lives revolved around his condition. When he died I had a 6 year-old and a 2 month old so it was about them. Nearly 4 years later I have a 3 year-old and a 10 year-old. It is still all about them. My 10 year-old daughter is dealing with Dyslexia and ADHD Predominantly Inattentive and every night it literally school work from the last bite of dinner to past bed time while I try to make time for the 3 year-old and his ever developing brain and personality.  What a worker that child is though.  Once motivated, she puts in the work.  Motivation is a challenge and the same method might not work on consecutive days.  But you could say that about any child.  Somehow, she's developed an internal expectation of herself beyond what is generally expected of a child with Dyslexia and ADHD-PI. But then I haven't shared those typical expectations with her.  She is expected to work at the level at which she is capable.  I spend hours and hours finding ways to increase that level for her.

And I find myself thinking…where am I in all of this? In the midst of 2 jobs, education plans for 2 children, a 20 year-old house with a mortgage that needs work, vehicle maintenance and everything involved in taking care of and truly parenting 2 children, where am I? I want to lean on God, but I can’t seem to permanently and completely escape the feeling I have to make everything happen. Thomas depended on me to run the home when he was here and I remember being very afraid of making mistakes.  I still made them. Usually unless it was a huge screw-up, I could fix whatever happened before he even knew because I thought he couldn’t handle the stress of anything going wrong. There were also times I cried from the stress and he didn't know why.  The medication he was on would not have allowed him to comprehend the situation.  Other times, I figured he had all he could handle going to work (even though he’d been told long ago to stop) and going to church.

Every day was like a battle for survival and as weird as it sounds knowing how unlimited God is, it’s like I somehow thought, we’re using up our share keeping Thomas alive and I can’t ask any more of God. Then afterwards with everything that happened, I converted from that to thinking we’re using up our share with me staying employed in this economy and being able to keep the children on the track on which they started and them being happy and healthy. It’s like provision is all I expect.  For everything else, I literally bust my behind day in and day out.  Nothing wrong with that I guess, except for the fact that I know that sometimes I'm doing it because that's the only way the life I want will happen.

I know in my head I can hand God my shattered heart for mending and I know only He can mend it, but I get half-way in and step back. I’m on guard so the healing process I believe has slowed for me. I spent so much time on guard as a spousal caregiver and now as a solo parent, it is troublesome to think of completely letting my guard down even with Him. Lately when I am brave enough to talk to God about me and listen I hear “true love”. It’s not just what He’s offering. It’s what He’s been giving the entire time. Only that could have stuck with me not just the now nearly 4 years Thomas has been gone, but during the time of caregiving.

I made rash decisions then. I sometimes had a crappy attitude about having to give up so much. I was angry about losing our dreams and sometimes I felt cheated having to be married without certain privileges, others enjoyed. But true love came through in the fresh air, in the love from my (then) little girl, in a rare moment we could laugh together Thomas and I without thought of his condition and in being able to watch him interact with his children, especially the times my stepchildren came to visit. And I was given one dream back when I had my son. His conception was nothing short of miraculous.

God has shown me true love and patience beyond what I have shown. I know it. I’ve even expressed appreciation for it. I just don’t think I have fully embraced it. And I think that’s resulted in some regretful decisions. Some was “I’m going to do what I want right now because I’ve been cheated out of so much already.” Some of it was just not looking far enough down the road to see the full result. Some was thinking I have to make life happen because no one else will.

But I’m smart enough to know that as alone as I have felt, God has been there or I’d likely be somewhere in pajamas looking at the soft walls. Still trust is an issue. It’s like when employers have teams do that trust exercise where you fall back into someone’s arms because if they really trust each other things will work better. Life is decent, fun even with multiple difficulties and challenges, but I think one of my issues lies in wondering how much better it could be if I let myself fall backwards to Him. Am I keeping myself and my children from better? A new love even? God’s never let us down. Not really. And I hear that still small voice: “Trust Me, I’m not out to crush you.” Still with everything that has happened, I haven’t yet been able to completely and permanently shake that nagging feeling that I can’t ask any more of Him and if I lean back I’ll get hurt.

My hope is in His patience and understanding. We can all place hope in that. God loves us.  He loves me and even more than that, He is well aware of how difficult all of this has been.  I'm aware that I can keep going with apprehension as long as I keep going.  Afterall, it worked for that guy.

Sunday, November 17, 2013

A New Stage: Frustration (A Summer Journal Entry)

My daughter was just shy of 7 years-old when her father died and I'm not quite sure how she felt. I knew she was going to miss him but mostly what she talked about was what was going to happen to him once we buried him.

Eventually when she was about 9, she got to "It isn't fair."

She's 10 now and we are over 3 years out. Thomas is off the pedestal and that has brought out a lot more in her. She's looking for reasons and for this to make sense. Lately, she wants to know not just why this happened to him, but why it happened to her. "How did I get here? And I'm not talking about you and daddy having sex, mom." "How did I (emphasis on I) get here into this (emphasis on this) life?"

Now we are a Christian family so the answers in this house center around faith when it's warranted. As the conversation went on she confided that she's (like a lot of us) having a tough time with her faith and she eventually told me it had to do with daddy. She described it as "frustration" and wanted to know how to deal with it.

First I admitted mine. I told her it hasn't been easy to hold on with all that happened, how daddy was so sick, then his death, the problems with the money, not being able to spare her the pain, all that. I admitted I have times of frustration, but I've tried to because of all of the positive things I can attribute to praying, believing, etc. and we talked about those.

I told her I know it must be hard because we miss daddy, but whatever you feel about what happened whether it is sadness, frustration, anger, it's okay. You won't hurt God's feelings. He can handle it. That's why I've stuck with Him. I feel like He's handled all my anger and still loved me and helped me. He's felt sadness and anger and everything else and He'll still love you even if you have to tell him you are frustrated with Him. And I told her that just like God, I could handle her telling me whatever she was feeling about God and about daddy.

Then the flood gate opened. She hadn't broken down like that in quite a while. It was what we would probably call a cleansing cry. I've accepted I can't protect her from the pain and that's been hard. Guiding her through it sure isn't in any way easy, but I feel grateful she isn't closing up. She said she felt much better and we've started some reading as she asked for a book to help her with praying and her behavior. She's Dyslexic so she very rarely asks for anything to read, so it was pretty big, but we plan to read together. I got her a child version of a prayer book I have.

So, it was one of those times my part time job got no attention.  I write and transcribe at home part time. Quite a few nights became snuggle on the couch for a movie nights. Weekends were for field trips: one to a farm about 40 minutes away. Other activities for the summer: museums, nature walks, aquariums, and once the weather cooled, the zoo. Those were way more effective for her than worksheets and books alone. Helps my son use up quite a bit of energy too.

I look at him sometimes and wonder when we'll hit these stages with him.  Having him meant starting over in a lot of ways.  As he grows, I wonder if I'll be starting this journey over in a lot of ways as well.  We'll see.

Sometimes...I Do Feel Overwhelmed (A Summer Journal Entry)

And summer is one of those times.  When August hits, it is not only the most expensive month, but now it is the month when my stomach starts churning thinking of the upcoming school year.  I could really use someone with whom I could shoulder all of this. When Thomas was here he was sick and I had to be the strong one, the foundation, the one to handle everything.

I was the main parent, the money manager, appointment scheduler, housekeeper, everything. He was sick so long, I hardly remember what it was like to really be able to rely on him like most women I know rely on their husbands, but I tried to be grateful he was here to talk to, but when I really really needed someone to talk to, about my fears, my hopes, my angst, I didn't feel I could add on to what he was already dealing with because of his health issues.

I'd gotten decent at the super woman thing, but it did wear thin before he died and he was upset at having to take more on for himself even though it was minimal. He felt all he should have to do was work, but really I was trying to get him to go out on disability because I thought he'd live longer and we'd be able to be more of a family. No go.

Isolation was the key word.

Now here I am with the children, working to get 504 Plan requests together and whatever else Ariana needs for the upcoming year. ADHD predominantly inattentive seems to be a foreign concept. Oh she doesn't have that, she isn't hyper. So on top of it all, I'm feeling misunderstood about a subject I'm still working to understand. I have read probably 6 books on ADHD since she was diagnosed and just as many about Dyslexia. I finally found a book solely on ADHD PI and I wish I could pass it out to about a dozen people. What an eye opener. I had just finished it but it has changed my life.

Then trying to get people to understand that Dyslexia is not just about falling behind in reading...ugh! She's my daughter and I love her with every fiber and I'll protect her, advocate for her, and do whatever I have to in order to avoid her going backwards. The amount of progress she made over the past year with what little I understood it being the first year after diagnosis was remarkable.

Her school is small and now I'm getting hit with concerns with singling her out. It's really too late for that concern. It is what it is. She is fine with it. She actually tells people about Dyslexia now. She does well with the 504 accommodations and I'm not giving them up for anything. I am working my behind off with her at home to nurture the way she learns best and she is actually looking forward to going back in a couple of weeks. If anyone else has a problem with it I doubt they mind enough to switch and have their child have Dyslexia instead.

Then there's my baby.  I changed the night time routine so that it is more interactive with my son to get him talking more and using his motor skills more and following directions. The speech lady that came to see him felt he was a bit behind. He is already starting to use more phrases and words. She said something to me about him repeating his instructions and had a name for it. Who knew that was something bad. Geez!

And at night when they are in bed, it is just me with all of my research up way too late at night...and no one's shoulder to lean on when I do lay down.  It's just heavy sometimes. I'm generally not too bad about doing this alone. I was practically alone when Thomas was here and if I have to tell the truth, he might actually be with the crowd on this one as far as Ariana is concerned.

But others though they may be difficult to bring around, do care.  I'm going to use that to my advantage.

Saturday, November 16, 2013

But You Don't Go That Way! Toilet Training: A Battle of Wills

It's amazing what we celebrate. We have had our ups and downs with toilet training, but with no man in the house, I found myself in a power struggle with my son in the quest to get him to take his rightful place in front of the bowl. My niece gave me some suggestions on what worked with my nephew. My son stood firm in his position. He even claimed he had to poo poo to get his way, but what that did was let me know he understood what I meant when I said "boys stand to pee pee and sit to poo poo".
The man in his life, his Godfather gave him a pep talk and offered to take this on for me, but told me I could not give in when he asked to sit. This was a test. I had been able to demonstrate to my son anything I wanted him to do until this. He really had to trust me telling him this was what he was supposed to do. And it didn't look good. He didn't have the words to say it, but I was sure from the look on his face that he thought I was off my rocker. Every parent knows that look when they see it.

I started to wonder if I was just trying to get him to do this too early, but while he understood he shouldn't wet himself he would because he tended to want to avoid sitting on toilets away from home unless he had to poop. I couldn't take his pull-ups away at school until he went to to the toilet consistently. So the urgency of this is that it was actually holding up potty training. He was wearing undies with me and pull-ups at school.

Finally one night we found ourselves in another battle of wills. I again offered him a sticker if he went. I had some left over from his birthday party. He told me he was tired of standing there and I said, "Me too. Go pee pee so we can get out of here." We had talked, I had given him a bath (hoping the warm water would loosen him up), taken a break and gone back, but he still stood there. Every other time I had given in and let him sit. I promised him it was okay to let the pee pee out.

Finally the tiny little stream appeared. The boy hit the toilet better on his first try than...well, better than I expected. Maybe all those times standing there thinking about it were worth it. I held my excitement in check until I was sure he was done. Then we celebrated. He was so happy. And as promised, he got to pick out a sticker. He decided to put it on the side of his train table.
Eventually there was a string of stickers on the side of that train table. He began to notice how the toilet water changed color when he went and it became a game to spread that slight yellow tint around to practice his aim. It is amazing what we celebrate. Soon enough, it was "Mom, I got to go potty!" And the answer to my question, "Do you need help?" was "No". Now, he's earned time in his big boy pants at school. He's grown from my baby to my little boy. So I'm sure we've only seen the first of many times he'll think I've lost it.

Monday, March 25, 2013

We Plowed Through Monster Month to Victory

February into March 2013.  I've called February Monster Month, something I needed to attack so it wouldn't attack me.  With Valentine's Day, my wedding anniversary and it being so close to the anniversary of his passing, it had been rough on me.

Here was our last month.
I work full time
My daughter has tutoring during the week, which she loves.
She has 1 hour with a math tutor each Monday and Thursday 4-5pm
She has 1 hour with a reading specialist each Tuesday 4:30-5:30pm
Regular homework
Regular test schedule
School, church, work, preschool, housework, fractions, diagramming sentences, learning letters and teaching Elijah to recognize his name in print.
In February:
3 Black History presentations: Each one required researching a chosen person in Black History, preparing a 3-5 minute oral presentation and giving it in front of the class dressed as the person with props. Due dates were 2/8, 2/19, and 2/28

Science Fair Project: Due 3/7. There was a mix-up where I ended up thinking it was due March 4th. I actually didn’t know what happened until we walked in and my daughter tried to hand in her project. Two other children also brought theirs in. Her teacher was very apologetic and she’s a great teacher and as the day went on, I was glad for it. Just homework to focus on the rest of the week.

Needless to say these projects bring some challenges regardless, but completing these along with everything else with a child with learning challenges I have to take certain paths I might not normally take and it does increase the time involved. I’m still learning about dealing with it too, but things have been much better now that we know. That doesn’t even take into consideration having a preschooler in the house who needs my time as there is no one else in the house to give him any.

Her project was on magnets.  The background research took well over a week.  It was reading and writing and learning, all things that give Ariana the biggest challenges.  And this was after the monumental task of finding an experiment online that was written up in language a child could understand.  Sometimes I think the people that put these projects online expect the parents to be the ones doing them.  You'd think a Science website for children would be written for a child. 

Putting the project together took all weekend prior to March 4th  including Sunday morning when I was suffering from a migraine. Ariana had a hypothesis (questions), she made her guess as to what would happen when we did the experiment, and we did the experiment. She enjoyed parts of it and others were a battle. She enjoyed shopping at the science store for the materials, doing the experiment and recording the data, even chasing Elijah down when he would steal magnets off the table. Doing the calculations to get to the conclusions and getting the data ready to present, not so much, except for the part where she had to make bar graphs. We had a large tri-fold to present the Hypothesis, procedure, data and conclusions, then a log book that included the information she gathered on magnets, the experiment procedure in pictures, her calculations, and her data in little charts she made on index cards.

We were both exhausted. She actually fell asleep before decorating the cover of her log book, so I drew a magnet on it for her. Oh, and for good measure, Elijah started puking after he woke up from his nap that Sunday afternoon. A stomach bug was going around his school. Somehow it got done. But we learn a lot about time management when we have projects and this time was no different. We always talk about what we can both do better next time.

But along the way, there was also incidents where I fell short in the eyes of others where I think about what others expect of me and I just think, we still just get most things done. It is not usually smooth and rarely without incident, tears even. But there you have it. It drives the point home that there’s no one to be me, but me.

Even when I lack patience with my children, I know there likely isn’t anyone better for them. The multitasking, the sacrifice, it’s on me. If our lives will get easier and run any more smoothly it’s on me and God. That’s why they got their leap pads instead of me getting that new phone I wanted. I figured I’d reward Ariana for her hard work in February and Elijah for his patience even though he doesn’t know what patience is, he exercises a lot of it. And I'd slip in an educational toy that would also serve to quiet them at times. Elijah has a strong desire to learn and I can't always sit down with him. These toys tend to help Ariana learn a bit too, but I've read that games are good for people with Dyslexia. She's managed a 3.0 the last two quarters and I appreciate it.  So my motives were mixed. They came off ebay and they’re the Leap pad 1 and not the most recent 2, but that was the only way to get 2 of them. When they got them it didn’t look like it mattered. Now I don’t have a tablet of any kind and my phone is an antequated Blackberry Curve, but that's okay.

But thanks be to God, we plowed through to victory.  She got good grades on all of her History presentations though she struggled with the 3rd one.  And all I was after as far as the Science project was for Ariana to learn something and get a good grade.  To my surprise, the girl's project won first place.  I started off February calling it monster month, but my little family attacked it, clawing back even though I am sure my children had no clue what it really meant to me. 

Eventually known to only myself between the three of us, March 9th came and went.  We were on a little road trip we take every year to see UNC Women's basketball team in a tournament but it usually falls on a different weekend.  I acknowleged in my heart and on facebook, the 3rd anniversary of the date my best friend stepped beyond my reach. 

In that three years, I have experienced a wide range of things.  I was not shielded any more after Thomas passed than I was during his illness.  I have experienced what some might call the ugliness of grief.  In that time, I have pushed God away and pulled Him close.  I have doubted His love.  I have turned my head.  I have pleaded for help and then wondered how He put up with me.  I have wondered if He was even there anymore.  That's real.  I've experienced unexplainable peace and unbearable fear and doubt.  The truth is I have had days of feeling empowered and days I wanted to hide, so that anyone who didn't have the experience to know God for themselves would not be confused by what this Christian was reduced to, but I've come to understand, that while it is a lot for people to handle,  it's okay with Him.  God's shoulders are infinitely broader than the entire human race combined.  He easily handled it all and loved me.

What is real and what people need to know is that despite the ugliness, God never left.  On the days I couldn't reach inside myself enough to find that place where everything is possible, He didn't think less of me.  What is also real is that I have expressed my anger and frustration and gratitude and admiration and I've seen the beauty of His patience.  I've seen how He's still been present at my lowest moments, even if it was in the smallest way.  He's been there for me even when I didn't believe, didn't trust, didn't want to listen, was overcome in the sadness and stress just as much as the days I was empowered, believed all, hoped all, long-suffered, had all patience, and counted it all joy.  He's there when I'm about to scream in the 3rd hour of homework with one child while the other is climbing up my leg and He's there when I've gotten everything done at home and I'm in the park playing with my children.  When my 3 year-old son told me he needed a daddy too and I was lost for words, to the point I shook my fist at Thomas, God was there. 

That's why I appreciate Him more than I can accurately say.  The love that sent Jesus to the cross...it's always there.

My (Grief) Monster Month

February 2013

February is my monster month.

Valentine's Day, Wedding Anniversary, the beginning of the end even though I didn't know it.

In February 2010 he went into the hospital with pneumonia. I had just had the baby.

Valentine's Day and our anniversary were 6 days apart 14th and 20th, so we usually did something on the 17th. That year he had a procedure, so we just exchanged cards.

On our actual anniversary he told me he was going to do better about listening to the doctors and our lives would be better. I don't know why, but that day now feels like the beginning of the end. I had no real reason to think he was going to die soon, but when he said what he said, I didn't believe him. I didn't know why.

17 days later on March 9th, he was dead. So the sadiversary approaches.

In 2011, February kicked my butt and I cried a lot. March my son was actually in the hospital, released on the sadiversary date and I was so exhausted I couldn't cry.

In 2012, I was just uneasy. I cleared his clothes out and changed a lot of the house. It exhausted me.

This year, I'm just mad. I'm mad he was that sick. I'm mad I'm alone. I'm mad about all that was stolen from us while he was even here. We were stripped of everything that pretty much makes a marriage a marriage for 3/4 of the time we were together. And yes, I'm mad at the possibility that I'll never be loved, know passion or even lay in someone's arms at night. After the first year, I never got that with Thomas because of his illness.

I am grateful for what we did have in the time we had it. I had the chance to have children. It's just this loneliness is intense. First two years it was all for him. Now, my heart just hurts because he's gone, things were crappy a lot especially those last 4 years and our friendship was all we had, which was strained from caregiving and stress.

I still feel robbed. And I do wonder if of love, that will be all I know. I wouldn't be the first to have that happened. I'm struggling to dream right now.

I feel like my children were robbed. My son is 3 and he's starting to realize someone is missing. My daughter is 9 and is starting to ask more questions about what happened the day her father died. She and her brother were actually in the house with me when I found Thomas, but they were downstairs. I found him upstairs, somehow resisted the urge to scream my head off, and called someone to come and get her. She's found out in bits and pieces. First that he died in the house, then that I found him here and just recently when she asked more about that day I told her that she was in the house when I found him. My son just tells me needs a daddy. 

One day we were leaving the doctor's office and he called the pediatrician daddy. Just turned and waved and said, "See you later daddy," with so little effort. Other than being the same race, the pediatrician looks nothing like Thomas. I was completely caught off guard.

Maybe I shouldn't have been. My son is a happy little boy, but twice has just outright said, "I need a mommy and a daddy." Maybe it was just a matter of time before he placed that title on someone. I really thought it would be his Godfather before anyone, but I guess I successfully headed that off by emphasizing early on calling him "uncle" like the rest of his Godchildren.

We talked about daddy for a while after we got home. These are the days I feared early on after Thomas died. He's in a stage where he feels the void, but I can neither fill it nor explain it. He is as fortunate as he can get in that he has constant male companionship in his Godfather.

And because my daughter has some learning challenges, the plans Thomas and I made for her education have been hard to keep. It is so much work even without challenges like Dyslexia to deal with. In February, she has 3 oral presentations and a science project. And I'm tired. And because it's been nearly three years, I feel even more alone than usual.

It just really really hurts. A lot of the time I am okay. We are growing together the children and I but sometimes I see all the challenges ahead and have to constantly remind myself I can face them. Some will be a strain emotionally. Some will be a strain financially. Some will be both and the wound reopens on occassion. But I press on.

Back to School, part 3- The Price of Help

I know a lot of you followed my ups and downs with my daughter and our journey before and since we had her learning challenge diagnosed. She has worked hard and so have the various people that work with her. Her 3rd grade teacher whom she adores helped her with Math weekly over the summer and she has gone to her twice weekly since school started. She actually does most of the math homework with her. She’s had a reading specialist she has seen weekly since July. Her main teacher has been wonderful and actually has a lot of experience working with children with learning differences. She also sees the resource teacher at school twice a week.

The only special trip we have to make is for the reading specialist. They meet at our public library after school on Tuesdays, the one night she doesn’t have homework. My son and I usually read and play during that time. He’s enjoying learning the letter sounds now.

My daughter actually made the honor roll 2nd quarter. Though her accommodations have been minimal she pulled off a 3.11 GPA. With 5th grade looming, among other things, I started looking into summer camps for children with learning differences. The 5th grade teacher doesn’t have the experiences the 4th grade teacher does and with the additional demands, I want dd armed with more strategies.

For heaven’s sake, these things are outrageous. $2500 for 3 weeks of a half-day camp. $5,000 for 6 weeks-still a half day camp. Now when I went through my school search after the diagnosis I found some schools that provide specialized instruction and found them to be out of my reach financially and that is putting it mildly. There were three I looked at here and the cheapest was $18K per year.

I concluded I couldn’t do public school for a few reasons, the main one being she’d end up spending significant time in therapy just getting the tools to deal with the change. So she stayed at her same school, a small private school she’s always been in, and I had several meetings with the administration to make a plan for her and have had some since adjusting it. Certainly not close to $18K, but not free either. With paying her additional help, I shell out over $800/mo for her education. Then pay another $600/mo for daycare. That daycare bill is cheap in comparison to most, but I get a “multi-child” discount because the daycare and school are under the same system. But after doing that through the school year, there is no way in….

It is little wonder so many people parenting children with learning differences homeschool if they can. I read a blog of one lady who has four Dyslexic boys. It’s interesting because I imagine the summer program is like the one at my daughter’s school and mainly aimed at the parents already using the school. These people are paying (unless they are receiving help) a hefty amount already. But then maybe after spending the entire year in the school, they go to a regular summer camp.

It was just very discouraging, but I guess I shouldn’t be surprised. I researched the programs they use in the summer camps and during the school year and the cost of training and getting educators certified in these programs is anywhere from $1,000 to $3,000 per person. Then there is the cost of materials, periodic testing, the time put in to make each child's individual plan, etc. They have to push that cost off on the consumer. Still, $5,000?!?!?!?

Eventually I emailed the principle at Chesterbrook Academy. They were the only ones who have a program embedded in a regular school. I toured the school last year and spoke to the teacher dd would have had. Honestly, if I could have afforded the tuition, I would have put my daughter in that school and my son in the preschool down the street from it. I was impressed enough to rearrange everything despite how far out of our way, the campus is located. It is half-day like the others, but a 3-week session at least last summer was about $750, which is paid up front in full at the time of registration. Then the child can spend the rest of each day in the school’s regular summer camp at a discounted price, which last year was $112/week. Oh, and I would have to provide lunch each day. They said the 2013 price would be set in March and I went to their open house and amazingly enough, no increase.  The challenge now is Ariana.  She's digging in her heels to attend her regular camp at her school.  My alternative?  I've asked her math tutor about time this summer and I'll ask her teacher too, who is already preparing her notes on Ariana for the 5th grade teacher.  Now, combing the internet for an appropriate summer curriculum for both children.

This has certainly been an emotional and financial challenge and one of my main challenges is to keep this from defining her, from defining us. I don't want everything to revolve around this, but the way these programs charge you would think that is exactly what is supposed to happen to people. I really want to give dd’s 3rd grade teacher a raise. All she asked was $10/hr and she’s an experienced tutor and former employee of a prominent Learning Center. It will have to wait. I manage to find reasonable things and even free things if I look hard enough, but most everything is really expensive. I won’t even go into the price of some of the software I have found since my mom and stepfather got her a desktop for Christmas. I’m down to one payment on our minivan which I will make this month and I’m hoping to drive it at least 2 more years. So hopefully things will get a little easier.

On top of all that with Ariana, the people the daycare invited to see the children wanted my son for speech therapy. I was less than shocked. When dd was going to speech therapy, I saw plenty of families getting multiple children seen. But, I refused. He wasn’t even three yet. He’s three now and has improved by leaps and bounds, although he still doesn’t say nearly as much at school as he does at home. But his Rs sound like Rs now and his Ls sound like Ls now. Both sounded like Ws before. His THs sound like THs now and they sounded like Fs before. Pointing to a number 3 and asking him what number it was got you: “Fwee” before and it gets you, “three” now. Saying “hello” to him before got you “hu-whoa” before but gets you “hello” now.

We plug on.

Back to School, part 2-First Report Card

In October, I had my first Report Card Conference of 4th grade

As usual, each teacher schedules each parent (or set of parents) for a 10 minute meeting where you receive the report card and talk about the child’s progress (small school). Now we have access to grades as soon as they are entered into an internet system the school has and they bring the grades home. Plus we have regular conversations and emails. So that way there aren’t a lot of surprises on Report Card Day.

I didn’t have the sense of dread I have had the last two times I went to one of these conferences. My daugher Arianahas been working hard and for the most part been cooperative. She is grateful to have been able to remain at her school and I think she is beginning to see everything that is going into helping her. The teacher (Mrs. F) was hired late in the summer so we didn’t get to have a sit down meeting with her until a few weeks into the year, but I could tell from my initial conversations with her, she was going to have an understanding of how to reach my daughter. So with the goals and plan she has we (Asst Principal and I)met with her and she made some additional adjustments. Mrs. F has worked with challenged children before. At the time of the hire, from what I understand, no one involved in the hire knew that. And I couldn’t have asked for any more with the first full school year after the diagnosis.

Patience is required. Most of the progress I see right now in Ariana is emotional. There is a whole team responsible for that. Between what we do at home, the reading specialist I hired with whom she meets once a week, her teacher, her school's Resource teacher, the Foster Grandparent (volunteer in the classroom), and the assistance of her 3rd grade teacher (Ms. W) who helped her with math over the summer and continues to work with her an hour each Monday and Thursday under Mrs. F’s direction, Ariana is more confident in a lot of tasks that used to send her screaming from the room.

Her handwriting has improved immensely too. When she really takes her time, it is downright exceptional especially for a student dealing with Dyslexia. Time doesn’t always allow her to write that slow, so we are going to practice more on the weekends when we are working on vocabulary to put a little more speed in with the neatness. My main goal had really been to make sure she puts space between her words, (something a significant percentage of children with learning challenges neglect to so) and helping her get what is in her brain onto paper when she needs to.

She has had some oral tests, but the teacher gives the whole class oral tests. She does have a reduced spelling list, (14 instead of 28 words) but the students have various ways of earning extra credit. For her, she gets extra points if she does the any work associated with the words on the list she is not required to learn. Because there is reading homework each week and she reads 4th grade material at slightly less than half speed, her math homework is reduced; her tests are not, but she gets more time.

4th grade is a big step up from 3rd, especially in the areas of Language Arts and Reading. The report card had an A in Physical Education, an A in Bible and Cs in everything else (Math, Language, Spelling, Reading and Spanish). Personally I was thrilled. Ariana not so much and that’s fine, because I want her to want to go up from there. But I wanted her to find the place of wanting to continue to improve and stop short of feeling bad about herself for getting Cs. Last report card at the end of 3rd grade, she had an A in the Bible, Penmanship, and PE. There was a C in Reading. Math and Language were both low Ds, Spelling, an F.

I’m just as proud of her as the parents who have straight A students. What really was nice to hear from her teacher was was, “Ariana knows the material.” She’s learning!

My Son Too? Does My Two Year-old Need Therapy?

In Early Fall, a Speech Pathologist came to my son's daycare:

With everything going on with my daughter I could see this coming. My son’s daycare had a company come in and do free speech and language evaluations for the 2, 3 and 4 year-olds. When I filled out the form, I had every confidence that there is nothing wrong with my son but somehow I knew they would find that he needs further evaluation and treatment.

He doesn’t get every word right and there are some sounds that are off, but it isn’t that he can’t make those sounds. The things they listed that he had difficult with were:

Trouble naming body parts
Trouble putting 2 to 3 word phrases together.

As to the body parts, that’s an interesting story. There was a note they added that his teacher told them he knows and can name his body parts. He does. He just for some reason only wants to play the game of naming them with my daughter. She taught him his body parts and for a while he would not even name them for me. It took even longer for him to name them for his teacher. Not sure how long it would take for a stranger asking.

As to putting 2 to 3 word phrases together. My son just doesn’t talk for just anyone asking him something. For a while his teacher said he would not talk. Later, she said she had trouble getting him to stop talking.

Now mind you I know his speech has some short comings. However, he can sing. He knows some Spanish words. He can count to 10 and identify the numbers. He knows the shapes: circle, square, triangle, rectangle, oval, diamond, star and octagon. He also can identify some letters. He knows a lot of animals and their sounds. I know he understands us and he speaks in sentences regularly.

I need my (game, race car, milk, grapes, banana, apple, chicken nuggets)
I want some milk
May I have it please
Give it back
My God is awesome
Good morning mom
Let’s go people
I’m a survivor
Hallelujah, thank you Jesus
I did it
Go to bed (to his sister when she aggravates him)
Mom, let’s go upstairs
That rabbit is over there
Where did it go?
I have an instrument
Can I brush my teeth
I see a (insert whatever)
I love you
I can’t open it
He also says grace before eating.

I could go on. I’m not sure he has the 450 word vocabulary listed on the milestone sheet they used, but everything else in the list for children between 2 and 3 he does. I picked up his results on the way to an expression/language/reading therapy session for my daughter. So perhaps I wasn't in the frame of mind to hear that then. Her sessions are costing me $60/week (2 sessions at $30 each). Most of you know the story on her. She’s Dyslexic. So I took more time to think about it later and my conclusion is this.

No offense to them, and I imagine having children in the same family with issues isn’t rare, especially from what I see when I take my daughter to therapy, but I wasn’t there and don’t know what they did. They at least do come to the daycare so there’d be no travel or rearranging of my schedule like I have to do for my daughter, but there would be a cost to me and I’ll need a second opinion from an evaluation done in my presence.

I spoke to her and she said she'd come back in three months, but never did. 

Update: My son is still to this day rather quiet at school, but he can recite a book he has heard 4 times, sing just about any song, recognize his name in print, lots of letters, numbers and shapes.  He understands me and speaks well enough to get out of trouble.  He is up to 7 word sentences.  His Rs no longer sound lik Ws.  His "th" no longer sounds like "fw".  I'm told he's ahead on that.  And is he sweet?  Today in real time when I picked him up from school, he asked, "Did you have a good day mom?"  It had been an awful day, but that weight came off of me at that moment.

The Battle for Me

I have been away from this page for some months as I broke the promise to myself to be as transparent as I could.  So, out of my private journal I'll paste my thoughts during the last six months.

I call the first entry "The Battle for Me."-Late July 2012

Lately I have been feeling “some kind of way”. I can’t explain it really. It’s a combination of a burning desire to move forward and a fear of the challenges I know are ahead. I feel a force holding me in one spot. Is it grief, that heaviness on the heart? Is it anger over my my husband's illness and death that has so radically changed me? Is it fear of the work I know is ahead dealing with all the growth and development my son is experiencing and the challenges of dealing with my daughter’s needs with anxiety, ADHD and Dyslexia? Is it loneliness? I’ve been on my own now for nearly 2.5 years and was a caretaker for nearly half my 10 year marriage. I’ve very little memory of a normal marriage with Thomas, very little memory of passion, of real give and take love and team work.

I guess it is all of those things. I’m trying to make some significant positive life changes along with dealing with all of those things. I’m again trying to wrestle us out of the grips of the drive-thru habit, mainly for the health and financial benefits. It hasn’t been easy. My children are used to instant gratification upon arriving home in the evenings. I have to give my son an “appetizer” until I get dinner on the table, but we had a good week, only getting take-out once in 7 days.

I want back the belief I had in myself that was ripped away by those years. I want to truly believe it when I say to myself he lived longer than he would have without me because he undoubtedly did. The best doctors couldn’t save him so why do I feel I failed him? He could have done a lot of things differently, but he’s not experiencing feelings of failure so why should I?  But with years of that life, I began to see myself as less than I am. Then he died while I wasn’t exactly in super caregiver mode. I had been deceived into believing after a variety of experiences that anything less than heroic was failure. That was wrong. I'm not a robot. I’m a woman with normal feelings, normal needs, normal desires, normal dreams and those were/are just as important as anyone else’s and they can't be turned on and off for convenience.

I don’t know when I gave my power away. Was it when I fell in love with him? Was it when we got married? Was it as he got sicker over time? I can’t be sure. All I know is that I want it back. He’s been dead for nearly 2.5 years. I’ve had a lot thrown at me in that time that hasn’t exactly done much to rebuild what was torn apart. But I want to believe the mere fact that I have survived to this point says a lot about me. I will always miss him. I gave him all I had while he was here. I likely gave him too much considering he couldn’t or wouldn’t depending on the day give me anything in return. Then he died anyway.

So I’ve been repeating to myself: You are the one that determines your worth. Despite every force’s attempt to beat you to a mental pulp, you are upright, making every effort to give yourself and your children a good life. The latest opponent: I call him the “what if” monster. A lot of us are probably familiar with it. He’s appeared periodically over the years and I’m tired of it. I really need to grind that monster and into dust and his friend shame too.

All that rambling to sayif you're familiar with this struggle with the "what if monster", you certainly aren't alone. Whatever your ups and downs have been, whatever your spouse said or didn't say. Whatever they did or didn't do, no matter where you feel you have come up short, those things don't determine who you are.

There will likely never come a time when I have it all together all of the time. I used to have the power to know that didn't make me less of a woman. Years of caregiving that yielded few results other than surviving the crisis followed by death and a whole lot of other crap, ripped away at that.

I'm working on grinding those monsters into the dust they tried to grind me into.