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” d├ęcor. 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.

Monday, July 2, 2012

Battling the "What If" Monster

My thoughts lately have been how I'm really living this life, kind of a “I’m really doing this without him” kind of thing. I’ve been having a hard time with beating myself up for my failures, deficiencies and where I’m just plain missing it, so my work has been to do that less and acknowledge my accomplishments more. Elijah is nearly 2.5, which means we have been on our own for nearly 2.5 years. That’s big to me. We are continuing to grow and change, go forward and backward. I still cry for a lot of reasons. We are still experiencing new things. Most recently, we were on vacation for a week and a half. That alone is a first. But my battles have been with something a lot of people deal with after the death of a loved one: “The What If Monster,” and I noticed it a lot on vacation.

Let me preface this by saying I enjoyed our vacation. I loved being with the children and we loved Disney World. We took on Tropical Storm Debbie and won. We ventured out in the rain laughing as we splashed through the puddles and waited 10 minutes or less in lines that normally take 45 minutes to an hour. We took advantage of the comfortable temperatures and did almost everything we had planned to do.

There were a few moments though when I wished Thomas had been alive to enjoy how the children were enjoying themselves. One of my favorite things is seeing how they explore, gain confidence, grow and light up as they experience new things. Then the reality would set in again. I don’t get to think how he would have enjoyed this. It would not have been possible if he were still with us. He was too ill to have taken a trip like that. I deal with this it seems every time I take them somewhere although it has significantly lessened over time. I’m not sure how it feels. It’s a bit of guilt and sadness when it happens. The guilt was pretty significant at first, but is way less now. Now it’s more complicated in that I can’t really put my finger on how it makes me feel.

I’m proud of myself. This was the 3rd time I have taken them on an airplane by myself, and my 2nd Disney trip with them on my own. But I guess there is part of me a place inside that feels a bit of a twinge when I see people on scooters there and the accommodations they make there for the people that are on them because we had discussed going and him getting one for the same reason he had the handicap placard in his vehicles (cannot walk over 200 feet without stopping to rest) and he had said he’d never use one. I don’t think we would have made it to Disney World.

I had to work really hard to make it happen. I’ve had to work really hard to make pretty much everything happen. Recently I had a moment when I looked at my son and remembered all of the doubts Thomas verbally expressed about my ability to parent the children. I remember all the doubts I myself had about my ability to parent the children.  I guess the shock of the pregnancy really was a lot to deal with in his condition. It wasn’t a very encouraging conversation. I look at my son now, how happy he and my daughter are despite all that has happened to us and shake my head when I remember that conversation. Just before we went on vacation, the children and I went to the cemetery for Father’s Day and a huge part of me wanted to scream: WHAT DO YOU HAVE TO SAY NOW PAL??!?!?! LOOK AT US! I miss him, but sometimes I think he better dang well be proud of us if he has any ability to be now.

We aren’t perfect and yes, the house could be cleaner, and I can admit I have several times thought about abandoning certain decisions upon which I have lived, but with all of the stuff that has piled on top of his death, even when it was by a thread, I have hung on. I am still here at nearly 28 months out assessing the emotional damage. I still fight with the “what if” monster in regards to the days leading up to Thomas’ passing. I conclude that there was really nothing I could have done or anyone else for that matter. I mean he literally sat down for a nap and died. He was probably sicker than any of us knew. Had it not been that week, it probably would not have been much longer. “What if” I’d been home? He appeared to have passed peacefully and I cannot know the trauma that might have occurred had I been home and called for intervention, what they might have done to him trying to save him with his other conditions, particularly the osteoporosis, it could have been bad. Things going a different way could mean he’d still be here. It could mean he’d still be dead. It could mean we would have a lot more horrific memories of that day. He could be here suffering even more now. I have to trust in the way things lined up that day.

It ain't easy. So much of my ability was questioned in those last months that it is much easier to feel like I failed everyone by not realizing Thomas was in trouble, that I walked away that morning when he appeared to be sleeping peacefully, but with him taking his last few hundred breaths. But I remember I did all I could living under some really rough circumstances, and that even with knowing all there is to know, I probably could not have saved him. My being with him probably lengthened his life by several years and he accomplished a lot in the years he lived past his prognosis, but I know we were on borrowed time. It is much easier said than done, but I have to remember that I have enough to do without torturing myself. Besides, there’s a long list of things Thomas himself could have done differently and he doesn’t have to deal with the guilt, so I should cut myself a break.

I need my confidence back from the “what if” monster. Ariana’s emotional recovery is just really beginning as the effects on her have revealed themselves in phases. Elijah is now 100% on recognizing his father in pictures. He points to Thomas’ wall I put up in the foyer and picks him out in each one, which means the wall is serving its dual purpose of honoring who Thomas was and showing his children who he was. I tell him daddy isn’t here, that he’s with Jesus. His response is interesting. “Thank you Jesus! Hallelujah!” But one day, I know it will hit him what that really means and I wonder if his response will be "Thank you Jesus" or "Screw You Jesus!" or "Screw You Mom, you've had us following this guy that took our father away?" It’s going to be up to me to put the blame where it really belongs so he knows who the enemy really is.

And I have to confess. Just before we left on vacation, I was more than tired.  I had thought long and hard about taking a different road with my life even though it would take me away from everyone we have left in our lives that have been rocks in the roughest waters we have been through. I haven’t been perfect, but it’s the road I have stayed on through hell and high water, the road that brought me peace at some point in every storm. So I know the “what if” monster doesn’t play nice and he doesn’t play fair. So my only choice is to pound him into the dust, work my way yet again down the arm’s length I’ve pushed God out to in anger and be “home” where I belong. This is the only life I know now and the only one I want to know and what I want for my children.

I’m staring down the big 4-0. It’s too late to make that big of a change. I have a lot of challenges ahead of me. I’d be lying if I said I wasn’t afraid at all. But I have courage because of the grace and love God's provided so far.  He's worked things out despite me so I have to stick with Him.  I could never match His faithfulness.  He's been there when I have not, listening to me ramble in fear, anger and confusion way more than in praise and worship. And He's given me courage.  I realize courage isn’t the complete absence of apprehension, but the ability to go forward despite it. So, we’re going forward.

Tuesday, June 19, 2012

The Reality that THIS is Father's Day. This is My Life

Well, we have gotten through our third Father’s Day since Thomas died. For my daughter they seem to be getting easier. For me this one was very much a “wake me when it’s over” occasion. Still, my gratitude for having children goes to Thomas and God, so I would never fail to acknowledge this day. My daughter as of now takes comfort in going to the cemetery and taking pictures. My son seems more interested in what is happening there each time. He’s learned the word daddy, and will say “hi daddy” when we arrive and “bye bye daddy” when we leave although I am sure his understanding is little to none here.
Still so early in my journey through parenthood, something in me doesn’t want to accept that this is Father’s Day. This is really my life. In the past few weeks leading up to Father's Day, I’ve been bombarded with the stats on fatherless children. I know the odds are stacked against us. That isn’t new. They were when Thomas was here. I’ve accepted we’ll have to be world beaters in my house. I keep us in church.  We do family devotions.  Sacrifices have been made for private Christian education, even with less income to work with now.  We chose Godparents from the beginning and I know that their Godfather will be there for them and Elijah will become the man Thomas would have taught him to be under his guidance.  Still this ...

It may never sit quite right. The pictures are beautiful. They show sensitivity in the children, even my son. They show the love and devotion in my daughter and how curiosity is growing in my son. In one you can see Ariana talking to Elijah. She’s telling him about their dad. This is Father’s Day for us. We are slowly but surely playing the hand we’ve been dealt and making a life for ourselves. We’re a crazy, but loving trio who love nothing more than being together.

I’ve changed. I’ve lost my poker face. Bluffing doesn’t work anymore. More and more days, I'm fine.  There is no day without laughter.  There is no day without joy.  There are days I'm either just okay or I'm managing or I'm mad.  The pain on some days is overwhelming when I combine the reality of what we went through and how he was gone from them, from us so soon. But when I think of how he was suffering and how I was suffering, I know there was no alternative besides a miracle healing.  He had to go to Jesus for that.  We miss him.  The brutality of the physical and emotional pain he went through and the emotional pain and stress of managing a household underneath it all I went through had to have a time limit.  The fear and anxiety and angst my daughter dealt with is just now surfacing.  Here at over 2 years out, I’m still assessing and addressing the emotional damage.

But Rome wasn’t built in a day. Heck, neither was the world. God could have blinked and had everything here in an instant.  The fact that He took six days to create everything teaches me that big things take time.  We are a work in progress.  We are learning to live with the pain. We are navigating with all the bumps in the road. We laugh at how Thomas and Elijah would likely be driving each other nuts. We lament he isn’t here to see how the children are growing. I try not to think of the long list of milestones ahead, all of the things I’ll experience with them that he never will. Their lives were really just starting and then we had to start over. Ariana wondered if he’d be proud. She’s sure he’s keeping an eye on us. I told her I know he would be. I told him he better be.

Wednesday, May 23, 2012

Father gone, Learning Challenge, ADHD: My Baby the Giant Killer

I know these things don't define my baby; yet, here we are.

I posted on my widow forum, that we have the diagnosis. After years of struggle, tutoring that didn't help, many nights of frustration, of feeling helpless and just plain tired, what I suspected was true. I had no problem accepting the ADHD diagnosis or the Dyslexia diagnosis. What I knew was that I had a child no less intelligent than anyone else who was struggling to read, (though has improved a lot), took forever on her homework even with me sitting right there (though there has been improvement there too) and was tanking almost every test. I wanted answers. I needed answers. I was desparate for answers.

It was not an easy path to the diagnosis. And the path hasn't been easy since I had it. The choice of a school for the upcoming year is still not final. She has a seat in a public elementary school near the school she attends now. She'd need a scholarship to go the private school I toured that already has an impressive program for children with learning differences. Three others were closed options as in they only had children with learning differences enrolled and that is not what I want for her. Her current school like almost every other private school, is not used to dealing with children who need accommodations. We have been there for a long time. She was in the daycare and went straight to the elementary school. Our pastors are the CEOs (aka headmasters) so naturally after all they have done for us, I was not going to remove Ariana without a conversation.

Well, here's what happened. Due to his own history, my pastor wanted to provide services for children with learning challenges, and prior to Ariana's most recent evaluation he said he would look into it, but the research on costs, staffing needs, accommodations and modifications required had been put aside due to other things being addressed. It took a while to get the diagnosis due to some delays in paperwork, but I eventually had it. Within three days of getting word of the diagnosis and my sincere angst, but willingness to change schools, he had put together a team of six people to bring in what Ariana would need in hopes that she would not have to change schools.

I don't know if all this will result in her being able to return this coming year or at a later time, but I certainly appreciate the effort. Everyone agrees there is no reason to retain her and that doing so in her case would do more harm than good. The path for her will best be served with remediation and accommodations in the classroom. Her school has the psychologists recommendations. I sent the psycholoist's report to her pediatrician and had an appointment with him yesterday. I now have a prescription for an ADHD medication and with the summer to see how it will work, and make adjustments if they are necessary. The public school told me that due to scheduling an IEP would not be written for her until after she'd been in school there for a while anyway, so I am not rushing to get them the report.

I have contacted several sources for tutoring over the summer. I heard back from a lady certified in the same program the therapist (who saw Ariana saw back in November) wanted to use. I also have the home version and will finally have time to use it over the summer, and hope to only have the tutoring 1 hour per week. She costs $50/hr, but at least it will be one on one. I have replied to her asking about her availability and the logistics on how she works. The pediatrician is referring us to a speech therapist who will contact us for an appointment.

Today, I have a meeting with the resource teacher and administration from her current school. So, after hours of research with the psychologist’s report by my side, I compiled an initial list of 11 accommodation/modification requests for Ariana to take to this meeting at her school today. The list may need to be expanded or reduced depending on the effects of the medication and the tutoring she’ll be getting, but it is a place to start. An individual education plan also consists of a set of goals, so at the bottom of my request list is a request for the goals the school has for 4th graders so I can decide whether or not to have those goals adjusted for Ariana.

Along with those requests I have printed copies of my research sources from the websites the psychologist provided to support my reasoning in making those requests. I’ve also made up a check list I’ll be requesting Ariana get to use each day to make sure she has everything she needs when she packs up to go home. It is called “My Take Home List”. I listed every book she’ll have next year, and there is a section called homework sheets with each subject listed as well. Each line has a box to check. I’ll be asking that she with help from the teacher or a friend, take the sheet and the homework assignment sheet and get help checking things off as she packs at the end of the day.

She would often come home either without the worksheets she needed to do her homework, without the books she needed or both. I actually had extra copies of some of her books that I had purchased in case she forgot the sheet at school. This was usually demoralizing for her because she might have done half of the sheet between end of instruction at 3:00 and when I arrive at 4:00, but would have to start over with a blank sheet once we got home.

I realize this will be the first of many of these meetings. I’m slowly wrapping my head around getting the mental energy to keep going. Lord only knows there might be other undiagnosed children in there that end up getting help without having to change schools. My pastor has been appreciative of the push to move forward in expanding the school’s capacity. If it doesn’t work out for this coming school year, I am confident she will be able to return and that is comforting.

I guess we're going to have to be world beaters in our house. Bring on summer. I think we’ve earned our vacation.

Wednesday, May 9, 2012

26 Months: I Should Really Be More Proud of Me

It is one of the things I am working on, being more proud of myself.

It is hard to figure out therefore explain the way I am feeling right now. I could say I miss Thomas. I could say I’m worried about Ariana’s transition to a new school now that she has officially been diagnosed with Dyslexia and ADHD. I could say I’m worried about getting her everything she needs. I could say I feel alone not having Ariana’s father to talk to about this. But I’m also not at all sure he’d buy into the diagnosis. It makes sense to me though. I could say I’m sad that Ariana has to change schools because she is so upset about it (and she doesn’t even know yet that it is definite).

I could say I’m just flat out tired because I have been working 15 hours most days of the last 3 weeks. I could talk about the daunting task I have ahead of me of getting Ariana an Individualized Education Plan written and signed. I could yet again begin to lament situations surrounding my husband's illness and death that have put me in various uncomfortable situations over the last two years. But then I’d have to say how I really wish I didn’t think about those things every time I had certain challenges.

Change just isn’t welcome is all. I guess it was not guaranteed that I’d be able to stay on the path we laid out for the children. Things happen. We find out things we didn’t know before now. Private school was a huge part of our plan for them, but I have resolved it in my head. There is just one here that can serve her with these challenges and we'll need a scholarship. I am applying though. What’s important is that each child’s needs are met however I have to do it.

Decision time came and went. The evaluation came and went. Then the results came in. Now I’m in the process of initiating the necessary communications for the transition. I started communication with the public school I chose and resumed it with the private school I chose. As advised by the psychologist and several other people who have been down this road, I got myself an advocate for the process of getting my daughter what she needs. There is a special needs teacher at my church I have made aware of Ariana’s situation. I had asked her to tutor her, but all of her time was taken. She said though that she would do what she could to make sure Ariana's Indivual Education Plan was a good one. I made an appointment with her pediatrician to talk about options for dealing with the ADHD. It’s not for a couple of weeks due to availability.

What I’m facing and I think what hurts is the plan is changing without the man with whom I devised the plan. People who know are supportive but no one can dive into this at the level her other parent would. I will miss her going to the same school and I can admit I’m a bit emotional about it at times, but I’m looking forward to getting her what she needs. But I think my emotion about it has as much to do with having to leave the plan Thomas and I made together as anything else.

This was one of those things that would always keep him “active” in their lives in my mind and once we go off that plan, he’s not or at least not like he was. My children are so young, I have had to and will have to make so many decisions about them without him. Just makes me feel really alone I guess and it feels like he is even further away now. Knowing that 1 of every 10 children has a learning challenge has not helped yet. Not sure if that makes any sense, but I know it would not have a snowball’s chance in the desert of making sense, if I didn’t voice it.

But I look back and see I have been on my own with them for 26 months. Elijah was 2 months old when this happened and I am floored when I look at him now. Ariana having been through all she has been through could have a lot more issues going on. But the psychologist said she had no reservations of recommending any program or school for her because despite everything else she is well-behaved and a joy to have around. Her teacher said she is one of the most well-behaved children she has ever had.

I lamented about the situation with Ariana over on the widow board I go to and one poster said she had read a lot of what I have written over the time I have been on there and that I wasn’t giving myself enough credit. She said I’d held things together for a long time and should feel more confident in my ability to move forward. Nothing I haven’t heard, but I think I reached a point of being tired of feeling bad about myself when I read it.  And I thought to myself.  Yep, and there was so much pressure on me it was unreal.  I should give myself, and therefore God more credit for all that is intact at this point including my sanity.

It’s just that sometimes, when I think about it all…it just hurts. It hurts like a dull ache of a weight on you.

This journey prior to and after Thomas’ death really did a number on my self-esteem. I am not where I want to be yet, but with all of the trauma and drama we have experienced…I should be amazed at my little family. I am amazed at my children. It’s being proud of myself I have issues with and I realize that. As I have carried on in a situation that would likely crush a lot of people I realize it would serve me better to acknowledge it more often. Even progress towards progress is progress.

Wednesday, May 2, 2012

Frustation, Steps Forward and Back, Decision Time: Can I Do It?

Spring is often a time for change, birth, blooming, what have you.  There is no lack of change happening here.  I feel like this journey I’ve been on has left me either ill-equipped or just too drained to deal with the challenges I’m facing. Of course there is also the possibility that none of that is true and I’m just being too hard on myself as usual. I think it is a bit of both. Either way the alternating between forward and backward progress is draining.

Okay, so after continuing to struggle while waiting for a spot to miraculously open up at the therapy office where I had Ariana evaluated in November, I took her to a psychologist. I can’t get her any help without some type of diagnosis whether it’s adhd, dyslexia or both. And paying for tutors and private school was getting me nowhere. Ordered the home version of the program the therapist (that has no spots open) wants to use, but after doing her regular school work, we are both spent.

I met with the psychologist on my own first for an hour to talk about what we have been experiencing. Of course this had to include talking about Thomas’ illness and death. I think I have said before that talking about all we have been through at once really does something to me. Hearing it all come out of my mouth and watching the reaction even of a well-trained therapist (and she does appear to be well-trained) or whoever I am speaking to at the time, is at the least a really interesting experience. Testing was scheduled for April 3rd and she’d test for adhd as well as any learning disability, plus anxiety and depression just in case. That day was trying and tiring, but the therapist said she enjoyed being with Ariana. She said she’s a wonderful child and it would likely be life changing just to get her into the right educational environment, but if need be she would advise on medication.

We were to meet two weeks later to go over the results. In the meantime I toured a school with a learning support program embedded in it. It was the only private school around I could find with one implemented. I walked away impressed, but also with the knowledge there’s no way I could afford it without a scholarship. The principal said that was a common response and handed me the financial aid packet as well as addresses of preschools nearby in case I wanted to move my son to ease the commute.

Well, after delay after delay after delay, I am finally headed back to the psychologist tomorrow for the results. The original plan was for us to meet two weeks later, on April 17th. Testing was April 3rd. However, the paper work required from her teacher took 3 weeks to come back. I should have followed my first instinct to hand deliver the package. The doctor for valid reasons preferred to mail it to the school.

After all was said and done, this conversation was delayed 2 weeks. Here we are in May. This discussion is basically going to decide where my daughter goes to school in the fall and I have been more than frustrated. I have not been able to get back in touch with the lady from the school I toured last month because I have nothing new for her and this also delays her being evaluated for the program they offer and me being able to apply for a scholarship, which we will definitely need. I did however, manage to get her a seat at the public school I wanted. It’s two minutes away from my son’s daycare. If we end up there, I’ll add therapy at a local center. My pastor (knowing how much the school means to us), wants to get her what she needs. I appreciate it, but I am just not sure if he has the time to do so and we can’t go through another year like we have.

In the meantime work has been crazy and my daughter has had some stellar moments and some not so stellar moments at school and at home. She has however begun to do her homework without supervision. I didn’t worry as much about the correctness of it as I normally do because I didn’t want to take away from her taking the steps to do her homework without me an inch away.

Last night even I called to her so we could prepare for a history quiz and she yelled back, “I’m already studying!” I peeked and there she was, sitting, history book open. While she took a break I wrote down the study questions the teacher had emailed to the parents and let her go on her own again. She didn’t mind. That’s a change from saying she needed me next to her. She may or may not do well on this quiz, but I won’t let that take away from her studying on her own. It’s a step right?

I feel for her. I know she has tried. Her friends mean a lot to her and while they have been supportive, there have also been some comments on all of the crying she does during the day. I don’t know if it is fatigue at this point, but she’s had more episodes of frustration and crying in the last month and so have I. She’s 9 years-old now. She had a birthday last week. We celebrated surrounded by family and friends and I didn’t experience the crash that normally follows hitting yet another milestone without her father. But as I move forward however slowly I can’t help but feel I lack the fortitude I need now. No matter what the doctor says tomorrow, there are going to be a lot of adjustments to our lives. Not the least of which is a possible change in schools, which is not the least bit welcome in her world. She’ll make friends wherever she goes, but I’m bracing myself for the ride during the adjustment. I will make a small mountain of decisions to make once I find out the extent of what she will need.

Challenges in everyday life whether they are large or small magnify the loneliness in my life. Reading that 1 out of every 10 students has a learning challenge hasn’t helped that. Knowing that I have to make whatever changes I need to make for her good haven’t helped that. Reminding myself that the hell we have been through would have crushed a lot of people hasn't quite helped that. I have reached the point where I have faith we can overcome what we face. I do however feel as if I have been swimming upstream for the better part of the last seven years. I’m smarter, more compassionate, and in a lot of ways a better person from the journey. I’m also flat out tired. The answer to my original question: Can I do it? I can. I will. I have to.

Friday, March 9, 2012

Two Years Without Daddy: Intense Emotions

My Facebook post for today:

‎2 years…what to say today. I had few words back then. I still remember every intense emotion during the illness, everything the day you left and every intense emotion since. I know our life made me a survivor. Thank God. Today I feel tired, but like I’ll push forward. I’m sad, but grateful. I’m humbled, but accomplished. Last night I thought it can’t really have been 2 years. Then I heard, “Mom, I need help” and realized it was not Ariana, but Elijah calling. The baby you left with me is a child. And I’m a lot different than the woman I was that day. Still, Ariana feels you’d be proud and I agree with her. RIP

And I do remember every intense emotion. That is how I would describe me today. Everything I feel that I eluded to in my Facebook post, I intensely feel it. With foresight I had originally planned to leave town later today and spend the weekend away with the children. It wasn’t to do anything unique, just to get out of town. But then I had a week long training I had to attend for my job that required me to be at work at different hours than are normal for me. For one entire work week I had to be here by 9am and stay until 5pm. I generally arrive at work at 7:30 and leave at 3:30 so that I don’t have to pay for after school care and to give us the time we need to finish Ariana’s homework. This training though meant Ariana had to go to after school care and because the dates of the training (February 27th through March 2nd), covered 2 calendar months, it meant (due to the rules) I had to pay for 2 months of it to the tune of $160. There went the get-a-way money.

In the end it didn’t matter as Ariana has homework this weekend and so do I. We have our ups and downs with her challenges. Last week she took a make-up history quiz and got a perfect score on it. Still has a bit of test anxiety though.

Ariana’s Black History project was major. One page report, a visual display with pictures, and an oral presentation on the assigned person. I actually got physically ill (I think from something I ate) the night we were finishing it, but that allowed me to take a sick day the next day to attend her presentation. All of the children did well considering 1/3 of the elementary school was there to watch them. Could be a lot for an 8 year-old. With the sensory issue in her fingers the one page report was a challenge, but she met it. We did the research and I took notes, then from that she wrote the paper in her own hand. We used a cardboard tri-fold to display pictures and details of the person. You could get extra credit points if you added something to your project. She had famous singer Marian Anderson so I ordered her a formal dress off ebay to wear. Got her paper back and the A+ was a welcome sight, as was the note: I also liked your outfit…10 extra credit points.

I am so tired. Work pressure is unreal being a “new-old” employee. Between training new employees get and the obligations I already had, there aren’t enough hours in the day. February wore me out and it was my own fault, but I just could not deal with his clothes being in the house any longer. I was ready to toss them out the window some days. Now I do love Elijah’s room. I added a carpet that looks like the painting of the city on his wall. It’s 4’ x 5’ and he loves rolling his cars on the streets on it. He has been much better than he was this time last year. I remembered today that last year on this date he was pretty ill. He’s grown up so much. A friend often jokes he’ll be asking for the car keys soon and there are days he seems to be changing so fast, almost too fast. He now asks for what he wants to eat by name and requests his favorite TV channel by its name too.

I’ve no choice but to push forward and even though I’m exhausted, I actually feel like pushing. The ups and downs of the last 2 years combined with Thomas’ illness have done a lot to me, but also almost made me crazy defiant against whatever might try to stop me from getting what I want. And all I want is a good life really.

This morning I sent a text to each of their Godparents thanking them for being there for us and I cried all the way to work. In hindsight I probably should have taken the day off, but it is going to take every hour of time off I can earn for us to take our summer vacation. I didn’t sleep well last night and when I woke up it was raining, but I made myself come in.

I’m intensely humbled by the experience, but have a chest pounding sense of gratitude and accomplishment looking back on it all. My faith went through the wringer but whereas I had to just know God was with me before, I can actually feel Him now and I realize it’s because I’ve allowed myself to feel Him. I’d vent then give Him my worries about money. I’d rant then give Him my worries about the children. I’ve only recently in the last few months though handed Him the pieces of my broken heart and after having it what I call stomped on for years, it’s been a process. I have realized the damage all the years of internal screaming have done. The hardest part now is patience with the rebuilding process. It means really dealing with all of those intense emotions: the anger, the fear, the sadness, the regret, the emotions of everyone around me due to the deep footprint he left here. I remember having to pull the rug out from under everybody that day while the ground seemed to shake beneath my own feet. The out-cry of everyone’s shock and sadness still rings in my ears and my daughter’s quiet tears that went through my shirt to my heart still rest there.

And every day I look into the eyes of my children. The people for whom I would lay down my own life are here every day adding life to this thing, pushing me, tiring me. They are partially the reason there are days this thing brings me to my knees but they are also the ones loving me back to my feet. My son who still has the reality of this thing ahead of him is all about fun. The eyes he inherited from me are as bright as the smile he inherited from his father. My daughter faces this with grace though she is in her words outraged about it. She’s just glad I didn’t die, but she lists all the things her father won’t be here to do and wants to know when I’m going to do something about it. That is a subject for an entirely different piece of writing. I’ll always miss Thomas. I know that. But I realize that of grief, sadness, anger, regret, fear, and the rest, the greatest of these emotions is love. From love, I’ve paid a price I would not have thought I could afford, but the bank is not broken. Bent yes, but not broken.

Rest in Peace Thomas. We won't forget you.

Thursday, March 8, 2012

February, the Longest Short Month on the Calendar

I am grateful to have survived it.

Now, I didn’t plan it this way, it just happened. But I realized this was a hard month last year. Actually it pretty much kicked my behind. As soon as the month came in this year, I felt the grief monster approaching. Everybody knows Valentine’s Day is in February. Thomas and I were married six days later on February 20th, so a "would be" wedding anniversary was in the mix. So what did I do? I added to it. Brilliant I know. I moved Elijah into his room because I’d progressed through the mountain of clothing Thomas left enough to order his bed. It came on February 1st and I put it up that night.

Ariana and I divided up Thomas’ hats and neckties and gave them out to fathers I know. There were thirty hats even though I’d already given twenty away. There were seventy neckties even though my stepson had taken some home with him after the funeral. I gave a co-worker nineteen of his suits for her husband, who may be the only man in the world I could find who could wear Thomas' size in both a jacket and pants. It turned out this man was down to one suit and two neck ties because he had given his suits to men who had none.

These were his nicest suits and as I went through them I found a lot of them I brought home.Getting those made him feel good and I was so inept at doing that the last few years, I fell back on that a lot…getting him suits and other clothing. They all went. I kept a couple of dress shirts and sweatshirts, and an overcoat I bought. I’m keeping one suit, the one he was wearing in our last family picture. The one he was buried in is the one he said was his favorite.

So, I completed removal of all of the clothing last month. I found I was almost in desperation mode. Some people find the person’s clothes a source of comfort, and they were at first, but now not so much. I’m keeping some items, but the rest perhaps because of the sheer volume of it, started to feel as if they are closing in on me. He told me he wanted them donated, so I had no doubts about what I was doing. I’ve heard year one is “he’s dead” and year two is “he’s still dead”, and that is how it has been here. There are days I can’t believe it still. There are days I’m really relieved the suffering is over and others where I really want to smack the little stinker for dying on me.

It got real. Oh it’s definitely real. I put Elijah’s name on the door of the room formally known as the man cave and even though some of the clothes were still there, he slept in there for the better part of the first two nights after the bed was up. I put those boxes in a corner as far as I could, then went down to a closet, opened it and found eight more suits. Holy Cow! How did that happen? Yeah, gonna need another box. That will make 8 of U-Haul’s largest boxes. Final removal of the four boxes I had at the end was on February 9th, courtesy of the children's Godfather coming to the house to retrieve them while I was at work.

The month was again threatening to kick my behind, but I figured I’d kick back. Got on facebook and posted about what I was doing and how I remembered getting those suits was how I showed Thomas I was into him. I asked every couple to think back on what they do to show their spouse they’re into them and try to do it up starting this month. Because I know for a long time, I missed and still do miss having someone “into me” and Thomas wanted his struggle to help people. And when asked if I minded what we went through being used for ministry, I was fine with it. A lot of times we didn’t have the tools to make our relationship grow or if we did we couldn’t use them, but for people who do have them, I do truly hope they use them.

It's made more difficult being it is very close to the anniversary of his death. He died seventeen days after our tenth wedding anniversary, seventeen days after he gave me a last speech of hope that I tried unsuccessfully to take in at the moment. All we had left at the end was our friendship, but I still miss that. Reality has set in that he’s not coming back, but it is also setting in that I’m every bit the survivor he was pushing me (sometimes against my will) to be. February still kicked my behind, but not without a fight.

And that other anniversary? Yeah, it's tomorrow.

Wednesday, February 1, 2012

I Will Run to You: When the Loneliness is Intense

That’s my mantra for 2012.

Looking back loneliness is not new. It’s pretty common in a marriage where one spouse is as ill as Thomas was for the length of time he was ill. I was no different. When I saw the weight the illness put on him over time, internalizing my pain and even some of my thoughts became second nature. Was it the correct thing to do? Not likely, but at the time I felt it was my only option. I had good reason to think so and don’t particularly have any regrets about it. Leaning on their spouse first is what a lot of people do. And it’s hard for people to understand why I could not or felt I could not do the same. It was hard to figure out timing. If it was a bad day, you didn’t want to make it worse. If it was a good day, you didn’t want it to turn into a bad day. Should be a pretty easy concept to grasp that stress would aggravate lung disease. I saw what it did to him when stress came from outside the house. How could I bring any? If there was a problem, I fixed it. If I messed up, I tried to make it right? If I was sad, scared or hurt, I sat quiet.

What I do have regrets about is turning everything in on myself and not leaning on God for those times. Convinced myself we needed all of His help just for Thomas to stay alive and I had no time to pray about anything else. Looking back I wonder how I could put God in a box, to actually think He couldn’t help both of us. I realize now that what I really thought, but could not admit to myself or anyone else was that because he was sick, Thomas was the only one in the house that mattered. That’s even worse. It’s one thing to think someone can’t help you. It’s another to think they just prefer someone else over you…and we’re talking about God, not an imperfect human person. That’s what being in a silent, dark place will get you: thoughts you know you shouldn’t entertain but take up valuable head space, conclusions that are not valid, but paralyze you and emotions not dealt with that eat away at you from the inside.

One night I don’t remember the specifics of now, I had to admit that while I knew in my mind it wasn’t true, in my heart I felt God didn’t care. I heard people say nothing could make Him stop loving you, but figured at some point He’d had enough of my fumbling and stumbling as a wife and mother and especially my anger during Thomas illness and turned His attention elsewhere. What else could explain the dark place I was in where just about everything I had wanted was either stripped from me or wasn’t going to ever happen for me. My daughter was my one saving grace and although I was grateful Thomas was still alive and loved him deeply, we’d been stripped of everything good that separates the marriage relationship from any other you have. One day during greeting time he called me “sis” and I nearly lost it.

My emotions in my marriage were just as intense as anyone else’s, but when your marriage is stripped the way ours was, what do you do with them? We couldn’t do those bond strengthening things necessary to make a marriage grow. What held us together other than our commitment to God and what we promised was the trauma and the friendship we had before romance was in the picture. And when one night out of almost 700 or so that changed, the plus sign on the pregnancy test solidified us. That 2nd child was also one of my lost dreams. In the back of my mind I thought, maybe-just maybe God did still care about what I wanted. It was not the most emotionally easy pregnancy, but neither was my first. Bottom line though we put up with each other and found other ways to go forward. Thank God for friendship. How many marriages last under the strain of disability and illness, absence of all forms of physical intimacy small and large on top of all of the normal issues couples face? Not many. I don’t know how sick he must have been, to sit down for a nap and not wake up. It’s been only recently that I have come to see the extent of the damage in my own life.

Nearly two years have passed since Thomas died and breaking that silence and bandaging those wounds is a process. My pastor’s wife mentioned to me one day that there are likely some things that happened no one knows about save God and me. It’s the truth and even though I have opened up more about the experience, there are certain things that will remain between God and me. I’m still learning to talk to Him again. This was a faith shaking, breaking, uprooting experience. It certainly wasn’t that God failed. His mercy really is ever lasting and I’d be lost without His grace. It was my failure to do some of the basic things that I needed to do in my relationship with Him. He kept me through all the way to now with little cooperation from me. That’s what He does. That’s grace and mercy. But for healing, I have to get involved. If I want to live and not just exist I have to get involved. It takes more than time to heal all wounds. I had to start over with Him at the ground floor. And as I’ve gone to Him, He has made His presence known to me.

One thing I’ve discovered though is I am very much still a woman. I’m not just a widow. I’m not just a mommy. Those are big things to be, but they do not completely define me. I’m a woman with normal wants and needs, just like I was when Thomas was here. And loneliness is still a factor. The intensity of it ebbs and flows, but when it’s intense, it’s like a monster. It’s not that toy under the bed or that article in the closet that makes a frightening shadow, but isn’t really anything to worry about. It’s real. The challenge is finding wholesome ways to deal with it. Now I have plenty to do. That has never been a problem. But the night always comes. And as I have for years, I lay in bed with no spouse, just for a different reason now. For a lot of that time, there’s a child or two on the other side, but as much as I love my children, that is not going to cut it. I could find a variety of ways to deal with it on my own and it’s not hard to figure out what some of those are, but there are rules on my life I intend to continue to follow. God has those in place for a reason, one of which is to keep my heart and body safe. Not that possibly facing a lifetime of this safety is something I enjoy thinking about. I was a wedding day virgin and don’t have trouble admitting I was more than a little ticked to be stripped of my privileges half way through the marriage. But it is what it is.

But Psalm 30 says weeping endureth for a night and joy comes in the morning. Shedding tears into a pillow, I repeat to myself, “You will get me through this won’t you? You won’t leave me will You?” You’ve completed me, haven’t You? You’re the one transforming my house into a peaceful place. You’re the one making the three of us a great family. You would not have seen me through the center of hell to the edge to leave us now.” I once thought He would. Heck, I’ve thought it more than once. I really thought I’d pushed God away in anger or disappointment one too many times. But the bible talks about faith the size of a mustard seed. I think that’s about all I had at times. But I’m learning if I take what faith I have and run to Him. When I do, the monsters aren’t so frightening.

Thursday, January 26, 2012

I Will Run To You: When Life Makes My Head Spin

That's my intent for 2012.

I'm notorious for putting lots of pressure on myself and trying to do things on my own. It was drilled into me even deeper during the years of caregiving prior to Thomas' death.

But as life speeds up, and I'm still slowed by grief, I'm learning to lean on God again. Okay, overall, things are looking up for us. I’m making emotional progress and there is a lot of emotional progress to make. I’m just so tired. I know it is common and normal with grief and I know my life doesn’t leave much room for rest, but I’m just really drained. It is taking a lot of emotional work to rebuild my life. It’s a job to process all of the feelings not just from Thomas’ death, but from his life and illness. A lot of prayer which sometimes consists of just rambling on and on about what happened to the only one who can’t get away from me. That’s God’s reward for being omnipresent. Thankfully He can take it. And when I look around, there’s work, the house needs attention, Ariana needs attention, and Elijah needs attention.

Work: After working as a contractor/temporary employee for 3 years, HR told management of my department they could no longer keep extending contracts and the long-term contractors either had to be hired on as permanent employees or let go. Well, despite me not wanting the only position they were hiring permanent employees for (because it would mean I could not be there for my children the way I need to be now) they wanted me to stay so they put in a requisition for my current position and it was approved so no more contracting, which means benefits now like company paid life insurance, 401K, long-term and short-term disability, paid sick and personal leave, all things I have been without for a long time. The last 3 years were actually the last 3 of 7 total years that have passed since I had a permanent job.

So now I’m going over things, especially our financial plan, making some changes and revamping our short-term and long-term goals. We’ll stick with the health insurance Thomas left us, but I’ll be getting us dental and vision through my job because frankly while it is good on medical benefits, the dental and vision portion stinks. I’m looking at routines and things at home because this commute that tends to wear me down at times…well now I really need to make it work. And I have been doing better since the permanent position came through. My career was basically at a standstill between being a contractor and the job that I didn’t want to take being the next level up, but when the director talked to me, she put me on a three year timeline to move up and I can live with that. I figure by the time Elijah is in school (which is how she phrased it) I’ll either be ready to move up or move on.

The house had an exterior makeover that I’m really happy with and it looks great when we come home in the afternoons. The interior still needs work, but I was too spent emotionally to continue after the exterior work was done.

And here I am…after nearly two years without Thomas. As reality set in that he was not going to come back, reality set in that I’m a survivor. But I had no choice. Life never slowed down for me and it isn’t slowing down now. I’ve heard the term mourning on the run and our lives could definitely qualify for that. Six days after the funeral it was back to work and unless I was taking Elijah to one of many check-ups he had that first year (one of which was two days after Thomas died) I worked every day except the 12 days total we were on vacation or someone was sick. I bust my behind at home and at work just like any other parent. At times I've found it hard to breathe. I'm convinced that during those times, my heart would have broken beyond repair had it not been for my faith in His mercy.

I started the book "Believe" by Jennifer Silvera. Her pain comes right off the pages. Those moments of looking up into the dark and wondering if anyone is there...if God is's real. Moments during Thomas' illness and times since his death, I've known that type of desparation.

What I'm learning in my time conversing with God, mainly crying out in my angst is patience. I've said a few times on this journey I have learned over this time to respect the load I am carrying. And part of learning that lesson is remembering my faith. It's remembering that beating myself up when the world starts to move too fast for me isn't productive. I've learned a lot of lessons about faith and grace, lessons I'm trying to pass to my children.

It's rarely easy. Today as I started my flight down the highway, my daily game of beat the clock as I drive as fast as I legally can to get to the school before aftercare, I looked up and admitted I was exhausted, my head was spinning with details, and even though I'm full of anticipation, physically I felt like crashing. I can trust God to understand I'm still grateful for all He's done, for the fact that I have a job and beautiful babies. But to do the job and raise the babies I need His help.

So when I ran to Him today I wanted to slow things down. Traffic wasn't bad on the way home and Ariana had already completed over half of her homework. Ahhh...thank You! Watching sports on TV, trying to wind down from the homework session with Ariana, I also watched the children play and tried to literally absorb the sound of their laughter. Eventually, Elijah brought his Thomas the Tank Engine toys from his room into mine. I played trains with my son. It's amazing how something so simple can have a huge effect on the day. He looks at me saying "choo choo" and I repeat "choo choo". He says, "All aboard!" My heart smiled and the spinning slowed.

Monday, January 2, 2012

December: Our 2 Cristmas Without Daddy, Part 2

So, we made the trip (it's an hour) to the cemetery to say Merry Christmas to daddy and visit with the in-laws. We arrived shortly after 10 to find everyone in Thomas' family that lives in town at the site. We joined in with the gathering to say Merry Christmas to Thomas, but I declined to talk right then.

After that we did a caravan to McDonald's where we had breakfast. Then I took the children to their grandmother's house so they could spend time with her and their cousins.

Once we left there I asked Ariana if she wanted to go back and see daddy before we went home and thankfully as usual, she did. I usually didn't but this time I wanted to go back. I had some stuff to tell him.

We has brought him a bouquet of white roses so I got some pictures of the children there. All because when I started to get sad there talking to him, she started singing to him, which she used to do quite a bit when he wasn't feeling well.

Then, Elijah seemed to be paying attention to where we were so I talked to him about why we were there. Who knew if he had any idea what I was saying, when I said his father loved him, but he had died and this was where he was. When we were about to leave though he stood over the grave and gave a thumb's up sign.

On Christmas Day, we had a nice breakfast, I gave Ariana something out of her stocking, and we went to church. After that, we fulfilled a request to spend some time at my mother's house. We finally got home around 5:00, at which point, I had to get dinner on the table pretty quick. Presents were after that, and after all of the preparation and wrapping, it took about 45 minutes to get into all of the packages. Setting up the toys was not as quick a process. How I could pick so many toys that required Adult Assembly, I'm not sure. They were happy though. Ariana loved everything and was glad to help her brother with his toys. He was a bit overwhelmed. I don't really buy toys during the year, so it was a bit of a shock for him. Several times I saw him trying to play with more than one toy at once. Their faces...that was enough of a gift.

After the New Year rolled in, I found myself thinking about all I had faced in 2011. This was my first full calendar year as a widow. Even though Thomas passed away pretty early in 2010, the part for which he was present was very significant: our son's birth, our 10th anniversary both of those happened in those first couple of months. And thanks to his determination, we also purchased the vehicle I have now.

A lot of things were left to do though. In 2011, I had some major work done on our home's exterior, things a 17 year-old house needs done in most cases, at least in this neighborhood. I started work on the interior of the house. I painted Ariana's bedroom and the room that will be Elijah's room. It's been a pretty emotional process, making some major decisions, and spending that money. It continues to be so as I finish packing Thomas' clothes for donation. Two boxes have gone to the local Men's Correctional Facility like he wanted. But they can't hold it all. I will follow his instructions to donate his clothes. I had so few things I was sure of when he died, but I'm sure of this.

I ventured out into the world with and without my children, but still found the space between them the most comfortable for me. This walk continues to be a roller coaster at times. But at night, and at certain times during the day, I feel a calm. That intense stress of waiting for the next emergency is absent. Constantly facing the possibility of Thomas' death was certainly different than it actually happening; but, even though we miss him, I cannot deny the brutality of his suffering and I cannot wish him back like he was. His love for us, his family and his friends had no limit, but his body was another matter. Many have heard the saying, "A heap see, but a few know." Well, a few really saw and a few really knew what happened at home, what he endured...what I endured...what Ariana endured. Our original prognosis was 2007 and he made it to 2010. I'll always be grateful for that, especially when I look at my son. We'll always miss him; but he's safe now, and I feel we can make it.

My daughter told me, "We just have to stick together no matter what. We have a great family still, the Lord is so worthy (of praise)." She's right. That's what we have done. I stuck with Thomas and he stuck with me until he was done. My children and I have our challenges, but that is what we will do. God has been loving, kind, merciful, patient and faithful. When talking to my pastor's wife she mentioned I still had a smile. I thought of my amazing children. I realize though what that look really is. It's peace. As challenging as this life is at times, I have confidence in God's plan. I know He loves us and intends for us survive and thrive.

In 2012, I want to love God better. He gave us life, gave Thomas rest, restored my faith, and made me dream again. I've seen His healing power in our lives. He's given us good people around us, and makes it all happen here, sometimes (when I'm under the sadness) with little cooperation from me. It's been hard, but I'm still standing. I've laughed, cried, asked why again and again. But I am finding out what I'm made of along the way. I'm a survivor.