Monday, August 27, 2012

Our Ever Developing Story-Making Space for Me

I'm less than a month from my 40th birthday.  A lot of my classmates have bucket lists, are scheduling special ways to celebrate, and doing various things to make this milestone from small trips to reinventing their goals.  My script has changed so many times already, but a few times I've had to change with it, rather than making the changes.  At 27, I got married.  That was my plan.  I also quickly became a part time caregiver...that part, not so much my plan.  At 30 I had my first child and became a mother.  Her conception was planned.  Thomas' illness seemed to be under control.  We asked God for help and well..did what we needed to do and had fun doing it  That was more or less the end of that.

At 33, the wind tossed us again.  I was a full-time mother and caregiver with both my daughter and my husband at home unable to care for themselves.  My daughter required my care because she was three years-old, my husband because he was incapacitated from several progressive conditions.  At 36, I found out I was pregnant again.  Someone planned it, but it wasn't me.  Thomas was working again but fragile.  Our house was too small for another person due to the unusual living arrangements the illness forced upon us.  Specifically, Thomas and I could not share a bedroom, but we hoped to one day.  When I got pregnant he promised to get it figured out by the time our son was three years-old.  That became our plan.  At 37, our story took another turn when I came home with my daughter, then six, and that new baby boy who was two months old and found Thomas had died in his sleep.  I have spent the last two and a half years since that day on a new road.

Sometimes it's lonely and sometimes it is frigtening. Ariana is nine.  Elijah is two years-old.  We have learning challenges, and potty training. I have a house to pay for and take care of and a vehicle to do the same.  But oh my I could not have asked for two better children.  There just aren't any words.  They're the best.  I have a developing career, but I have slowed its progression in favor of being there for my children.  And I wonder, am I losing myself in their care, the way I nearly lost myself in Thomas' care.  It took a lot of time for me to begin to visualize a life without my husband, more to want to plan our future and now trying to see the woman beyond mommy is a whole other level of difficulty. My children are my world, and right now it is mutual, but it won’t always be the case. I have rewritten the script a few times and it seems like every time there is a rewrite, I push myself to the back. I still have personal dreams, desires, big and snall, but who has time? I'm becoming confident in us having a good life as a family. I'm just still unsure of who I'll be beyond mommy. It seems the more I figure out, the more there is to figure out.

There is physical and emotional progress.  There have been a lot of changes here. I realized earlier in the year, that if Thomas were to come back there would be absolutely nothing here for him as far as what he used in his daily life. He has been gone for nearly 2.5 years and believe me, I am well aware he won't return.  There's just something about moving those possessions out of the house. As our son grew, it became increasingly difficult to keep Thomas' stuff around. At a certain point it seemed like it was us or his stuff. It was that much. To get an idea: seven boys got four pair of shoes each and I had half left. It took eight of U-Haul’s largest boxes to pack up the clothes I had left after I gave a man with two sons nineteen suits and four other men received a box each of various items. The hats and neckties were divided among seven men after my stepson took what he wanted.

I converted the man cave (the room he died in) into our son’s bedroom, which included removing all of the furniture except the chest of drawers, which now contain our son’s clothes and moving the 42 inch flat screen he loved from there to the family room downstairs. I also painted the walls and put up “little boy” décor. With the exception of my favorite suit, which I kept and his favorite suit, which I buried him in, and a few dress shirts, all of his clothes and shoes are gone, either donated or disposed of depending on their condition. I sent his uniforms back to the post office for others to wear. His vehicles are gone too.

All of that took me two years to do, but I had nightmares for a week about him coming back and being extremely upset that all of his stuff was gone. This was with the fact he actually told me to give his clothes away. I would wake up breathing heavily and sweating. Then I would flop back down on the bed remembering he was not going to return.  Still today I have moments where his death doesn't seem real.  He was larger than life in so many ways that sometimes it doesn't just seem unreal that he's gone, it seems wrong.  He made his presence felt everywhere he went and his care became the focus.  It was life or death.  I removed his stuff.  His presence will always be here.  He's a part of us. 

Is anything left? Two of his recliners are still here, but not the one he sat in most of the time. He passed away in it and I had it removed. His Bibles, books and videos are still here. His awards are still here and his pictures though I have rearranged things a lot. I kept the things I would need to show the children who he was. His books will show what he studied most about faith, how important it was to him that his home have God at the front.  His Bible with the highlights and worn out pages will show how he built himself up for the difficult journey he was on.  Some things are displayed and some things are packed away. My son is getting really good at "recognizing" him. While cleaning I found a picture of him that was a good 10 years old. It was a picture I took of him sitting on a beach reading. I asked Elijah who it was. He smiled, hopped up and said "daddy!" It amazes me how he does that with so much emotion given how old he was when Thomas passed.

I have the stuff up that honors Thomas in two centralized places in the house. There are two pictures of us together. The rest are his awards and other things that speak to who he was. It has been my intention keep him before the children, especially since it will be my job to put him into our son's heart as they weren't together long enough for him to do it himself. But over time, my goal is for the walls to also speak to who we are as we grow, the children and I.

Our lives have to do that too.  Now two and a half years down the road, I can look back and see what a process it has been for us just to become the focus of our own lives while keeping Thomas' memory alive.  I had to acknowledge our right to go on without him, allow God to show us the way forward and then move.  I think that is a process I'll continue to go through.  With most decisions  and developments in our lives I have to go through the steps again.  Our story is far from finished.

Back to School, part 1

This will be our 3rd full school year without daddy. He died at the beginning of the 4th quarter of her first grade year. The reality set in on me the day before her first day when we were on our way to have dinner with my mom and stepdad after church. I started to think of Thomas and the tears came as I was driving. Neither of the children noticed. I had recently went back and read my journal about her starting kindergarten and how much she interacted with Thomas that morning, proudly showing him how she was dressed, her new shoes and posing for him to take a picture of her.

It has been tough preparing for this year, making the decision to remain in private school after a Dyslexia diagnosis, arranging therapy, screening and hiring a reading specialist, researching different accommodations, having meetings with school administration staff about her, doing it all alone. And there is more to come. He wasn’t a hands on participant being so ill, and I’m not even sure how supportive he would have been in some of the decisions I have had to make, particularly the one to retain the reading specialist at $40/hour . Ariana likes her and unlike Sylvan, which is more expensive, it is one on one attention. I gave up home phone service to offset the cost at least until the first of the year when I finish paying for our minivan. I’m not sure what I will do then as far as getting it back. I felt like we were getting robbed on it anyway. I barely use the phone and was paying over $100/month. I really want to upgrade the cable and internet.

I felt some peace after the Orientation a few days before school. I met the teacher and though we had not talked about Ariana yet, during her presentation she mentioned how she would vary her teaching methods because she knew not every child learned the same way. She talked about singing the lessons and having the children prove they had mastered the material in different ways. She talked about molding them into creative thinkers as opposed to them memorizing everything. That includes doing the spelling tests differently and concentrating more on learning the meaning of the words. She told us she would not give more than 30 minutes of homework a night. Everybody was shocked. One of the dads jokingly asked “what will we do with the rest of the night?” She continued saying, “I don’t need 30 math problems for me to know they understand. I will be able to tell with 8.” After all of our marathon homework sessions last year, I literally got weak in the knees hearing this. I felt bad because we didn’t get all I wanted to get done during the summer and feared being swallowed up in homework again and having no time for building strength where Ariana needs help. I feared slipping back into the drive-thru habit in anticipation of spending 2 plus hours on homework after dinner. It’s a small class this year and she plans to use that to her advantage to help the children grow individually.

I did stick around to speak to her afterwards and let her know we had some challenges we were dealing with, what steps I had taken and where we are. She’s going to assess everyone in the first couple of weeks and communicate more as they settle in. She’s been teaching for 20 years. The reading intervention specialist has been doing what she does for 30 years. I feel confident in my decision to keep her in private school.  Mind you the actual panic attack she had when I pulled the van up to the public school I was considering did weight heavily on my decision.  Bottom line was we just are not ready for that much change.  Ariana has so far handled her father's death and our new life with grace and with the difficulties anyone would expect, but she's maintained her love for God, life and people. 

One thing she continued to say of her school during this process was "I have been there all my life."  That got me to thinking.  So few things have been there "all of her life".  I just after all of the prayer and observations over the summer concluded I could not take that away.  Am I nervous?  A bit.  I feel like I stepped out onto the water with the decision, but like Peter although I see the wind, I know Jesus is there.

Monday, August 13, 2012

Who Has Time for the Grief Monster?

Not me! He comes with fear, fatigue, anger, and a bunch of other things I just have no time for now.

School starts in one week. Ariana’s been in speech and language therapy for a month. She has another appointment tomorrow. Thankfully our insurance covers all but $20 of the $150 visit up to 75 visits per calendar year per person. This however is the one thing the county has said they would provide to what they call “parent-placed” students, which includes children who attend private school or are homeschooled. It would not only save me that $20/week, but also the schedule adjustments and travel as they would come to the school to work with her. They have not at this point gotten back to me about what would be required for her to receive those services. They have also not gotten back in touch with her school about it.

She’s been receiving help with Math from her 3rd grade teacher for a few weeks and will continue to through the school year. She has with a lot of reluctance worked at home twice a week. I have not yet figured out why she cooperates with all the people I pay, but gives me fits about doing work at home. I have no words for how exasperating it is trying to reinforce her work from therapy and tutoring and have her literally start crying when it is time to practice. I don’t do anything different. Heck, the speech therapist actually gives us the materials used to do at home. She cannot tell me why she does it. I believe it is to get out of it and I have to confess that too often it worked. Much of the time, after her fit, I had no desire to continue. But I also have to admit, I feel and have told her that though she is more than worth everything I am doing, it is time she recognizes all that is being done for her and shows me more cooperation. We had a deal when I made the decision she could stay at her private school, she would cooperate more and she has yet to hold up her end with me despite me adding (at the advice of the therapist) the opportunity to earn points and money for different things she wants.

Don’t get me wrong. I appreciate her cooperating with her tutor and therapist and I have told her that I do. I have been in the therapist office waiting more than once and seen a therapist come out and tell the parent, “I couldn’t get him or her to do anything at all today.” It didn’t result in a free session. At least I know I’m not wasting money, but it really does hurt when I not only can’t get the same cooperation they get, but get a fit that rivals a 3 year-old tantrum. The other day I pulled out some math for practice and the plan was to do it together talking through the steps. I was going to do all of the writing. She threw the fit. I gave her the paper and pencil and told her if she didn’t want to work with me she was on her own. She profusely apologized. We ended up doing Dictionary practice instead.

She likes her speech and language therapist and loves her 3rd grade teacher dearly. Tomorrow she meets the reading intervention tutor that will (if she continues to feel like a good fit) work with her weekly through the school year. I settled on her because the material/method she uses seemed to cater to Ariana’s needs the most while also being the most cost effective not just for use at home, but for use of the resource teacher at her school. The original program we were looking at has more expensive materials and educator training is like $1,000 per person. It has been beyond difficult to find a tutor certified in it. I found one and it was too difficult to pin down the right schedule for both of us. It was much easier to agree on a day and time with this one and her location of choice works for us. We’ll meet at the location of our city’s local library closest to our home. We meet the Math tutor at the location closest to her home, but we love that library and there is toddler story time that Elijah and I attend that takes up an hour of the two hour time block Ariana is with the tutor. I use the other hour to select books to borrow.

I have had several meetings with her school’s administration. They will continue as Ariana’s needs continue to change and we try various interventions for a balance of helping her while not distracting from the overall learning environment. Just buying a dictionary has required so much research. It is on the supply list and they will be using them for class work. Her home dictionary is large and heavy, but we have been practicing on how to use it using her spelling book from last year. It’s been going well once we get past the initial difficulties and get started. The print is large enough for her to read it and it has a lot of words. She is however adamant that it won’t work on her desk. Trying to find a similar dictionary in paperback has been an exercise in frustration. And when I tried searching for a dictionary recommended for children with Dyslexia, the most recommended apparatus was a talking, electronic dictionary. Now it can be used with headphones, but I can just see it now when she pulls that thing out in class and everyone notices she is just typing in the word instead of flipping through pages like everyone else. The assistant principal though said the dictionary would stay at school, so I think we’re going to try taking in the one she has already and buying a second one for the house. I really don’t want her forget how to use it.

Then there is silent classwork time and homework where reading is involved. I found some common interventions while searching that I’m also working on getting approved for classroom use. One gadget is a reading pen that will read anything it touches. It is about the size of a marker or highlighter and actually includes a dictionary. It also works with headphones and if we choose ear buds would be less noticeable. I know it will benefit her. The caveat with all of this is along with finding the right way to incorporate it with little distraction to the other children is how to make sure that she doesn’t become too dependent on any of it. When I’m not there I don’t want her using the thing to read the whole passage to her instead of just getting help with words that give her difficulty. I will have to trust that as her reading improves, she’ll want her independence and this thing and anything else we use will be a stepping stone to that. Independence is one of the major things I’m after. What I know is that I cannot spend another year sitting next to her for 3 hours every night she has homework. I wish I’d had it sooner to use over the summer, but I just found it recently. Up until now I have been the reading pen.

I’m also evaluating writing intervention software. Her handwriting has improved over the summer. She is writing smaller and neater with practice. She used to have a signature that would rival most doctors. Getting thoughts on paper without speaking them first continues to be an challenge, so I’m looking at software that will assist her with that. Writing assignments required me interviewing her and taking notes. Then showing her and asking “is this what you want your paper to say?” Then having her copy it over in her own hand. I guess it appears I’m looking for stuff to take me out of the process a bit. I know the independence would serve her well. She’s 9 and I feel I should no longer have to be 2 feet away for her the entire time to get her assignments done. I have another child in the house who knows all too well how to recognize and take advantage of me being occupied with his sister.

Speaking of Elijah, not long ago a company came to do speech evaluations at the daycare. I was not a bit surprised when Elijah’s paper said he needed additional evaluations and treatment. Um…no. He talks. He just didn’t talk to her and once I found out it was a lady, I had a feeling he likely flirted with her. He tends to whisper to strangers and while some of his consonant sound like other consonant sounds he’s 2. He can count to 12, knows his shapes, can sing songs, knows some Spanish words and knows enough words and how to put them together to charm us or to attempt to order us around. He’s discovered the learning portion about Sea Animals on Ariana’s Leapster toy made for ages 4 and up. It has a study mode where the information is presented and a quiz mode, which consists of questions like “which animal is a clown fish?”, but also questions like “Which animal is a carnivore or only eats meat”. He is up to 80% in quiz mode when he chooses to take 10 questions, most of which he will get right the first time. I feel like he will be fine if we keep him engaged. I’m way more concerned about getting him out of diapers, which he seems to care less about now than he did a few months ago.

Advocating and accommodating the special needs my daughter has and seeing to the development of my toddler son is taxing with grief. Having all of this on my shoulders sometimes makes me feel like I’m all alone. But I see it all at the therapist office and have pushed the grief monster away and stayed grounded so far. I see women I envy with large diamonds on their left hands who are stay at home parents there to get minor speech problems corrected in a 2 year-old while reading and going the week’s lesson with their 6 year-old checking out saying “daddy is bringing him next week.” I see women I cry for and couldn’t think to trade places with who are in for a life-time of therapy visits and may never be able to release their child to the world. But I sense acceptance in them and for the most part, I feel peace when I hear them talk about the multitude of challenges they face.

That got me thinking. What of my progress? Where’s my development? How’s my vision for our future? Am I any more settled into single life now than I was at the start of the year. I was very hopeful at that time of conquering the pain, fear, loneliness, anger and everything else in the mixed bag of widowhood. I’m last on the priority list now, just like I was when Thomas was alive, but my vision of our future was new. It was a new version birthed out of necessity after the man with the plan went (as I tell my son) “bye-bye to be with Jesus”. It has continued to be an up and down journey. It has continued to have periods of setbacks and the ride continues to rival the biggest roller coasters with twists, turns, climbs and drops. My determination is higher. I remain hopeful. My career is progressing despite the fact that I really don’t want it to now. I have maintained that my children required more of me than I was willing to give to a job and anything that interfered with that including the next level on my career path, I wasn’t up for it. I managed a good year-end review so new tasks have come my way along with the instructions, “Let us know when you are ready to move up.” Nice, but YIKES!

Flanking my computer’s monitor are pictures of my children. My daughter is on the left and my son is on the right side; their smiles often pushing me through the rough days. When I think of moving up, a lot of things come to mind. It starts from the big questions like how would I handle it if I had to travel? All the way to the fact I don’t have room in the budget for the wardrobe I’d need at the next level. I have tutors, therapists, diapers, private school and daycare. I have a mortgage, a vehicle, utilities, all types of insurance and food. I have to face it. My life as a caregiver and life as a widow has done more than pushed me to the bottom of the priority list. It has me rewriting my entire life. It has me reinventing myself to both stand the winds of change and keep the original plans Thomas and I made together. I’m far too young to let go of my dreams, but I’m fighting to even keep them in sight on the back burner. I rarely talk about them. I rarely admit they still exist to anyone but God. Ask anyone close to me what my dreams are and they’d struggle to tell you. Some might be able to tell you what they hope I’ll do, but the list of things I am willing to allow myself to openly admit I desire for myself is limited.

What is it? Am I now afraid to want anything more than for my family to be okay? Am I afraid something else will happen to smash my dreams against the wall? Am I just afraid of failure? The common denominator is fear. It’s a component of grief. Most widows experience it. I deal with it more than I like to admit. So far I have operated with courage, which I realize isn’t the total absence of fear, but the willingness to go ahead despite it.

So, who has time for the grief monster? He brings fear, anger, fatigue, anger and other things like financial difficulties. So far God has granted courage, an ability to rest some and push some and revealed areas where I can sacrifice. I can sacrifice about anything. I’ve learned how to rest a little better. I still get angry, but how I handle it has changed. Now, I want acceptance and release. I have accepted that I did the best I could when Thomas was here however misguided some of my actions and decisions might have been. I have accepted that Thomas did the best he could while he was here however misguided some of his actions and decisions might have been. I have accepted that what happened does not determine my worth or his. I have declared with everything in me it will not be determining the worth of my children.  I have accepted he won’t be back and there are conversations we won’t have and that the answers to the many questions that invade my thinking really don’t matter now. So I want to be released from the memories that hinder my self-confidence. I need the confidence to accept there’s still a plan for us and along with the ability to confess it, which I have done for a while, but also the ability to release myself to pursue it.

That’s my prayer for myself. I imagine God is waiting for that same cooperation from me that I want from Ariana. I need myself whole for us to have the life I began to see for us when I allowed my vision of the future to change encompassing Thomas’ absence. I have time to address the grief monster, but no time to accommodate him. Compounding the tragedy by keeping my head down and having that cloud hang over my children and me forever is not an option.