As the years go by...

It's been almost 3 1/2 years and I still find that grief is hard. It's a daily struggle to try to come to terms with what I've been through. Right when we faced our most difficult times, I felt comforted. I felt like I had the strength to go through so many obstacles in caring for Megan and her many tasks/needs. I could feel the prayers of others lifting my feet and putting one foot in front of the other.

If I'm being honest, these days I don't feel that. It takes great effort to put my feet on the floor and one in front of the other. I feel so far away from what was and struggling to make something of what is to be now and in the future.

When you've been through what I have, hope is hard. I've heard the tape playing in my mind that, "since God didn't rescue from circumstances then, why would he do anything else now or in the future." I know it's "stinkin' thinkin.'" But it's what I am mulling over right now.

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13

It's your 13th birthday! That sounds sooooo big.
Except that it's the 4th birthday that's gone by since you went home.
We're going to celebrate tonight. Daddy, Monica, and I.
We all still love every bit as much as we ever did.
We miss YOU like crazy!

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The Importance of Telling Megan's Story

At the last session of our bi-monthly grief group, we were asked to write a journal entry about why it is important for us to continue telling Megan's story to others we come into contact with for the rest of our lives. At first, I had trouble writing because I was thinking of myself and how hard it is to explain to others who didn't know Megan or the magnitude of care she required. Where do I start? How do I explain? I have so many pieces all jumbled up in my head that I get so paralyzed about what to say.

In the end, as I listened to the other people talk about why they thought it was important to tell their stories, these things popped into my head.

• I want others to see that special needs children are real people with real feelings, wants, needs, and desires just like the rest of us.
• I want others to see that special needs children are a valuable gift to their parents just as any healthy child is. They are fragile treasures that are entrusted to us.
• Yes, special needs children require extra care. But, when you are tuned into their every sound, grin or grimace, and the expressions on their faces, you realize how much they have to offer to people who take the time to get to know them.
• I want others to know that it's NOT a big relief when they're gone. Special needs children aren't disposable people. It matters when they're gone. There's a HUGE void that is left.
• I may not have the daily struggles of caring for Megan anymore. But, my world was centered around her needs all. day. long. And that world vanished before my eyes. I felt lost and confused about my life without her.
• The journey to finding your next steps in life is a long process. You don't just automatically feel free to do everything you thought you wanted in life before your special needs child came into it. Life handed me something hard and scary. What if the next step I choose is hard and scary too?

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3 years

It's been three years
...since we kissed your cheeks goodbye.
...since we held your little hand and you squeezed our fingers.
...since we sang Happy Birthday to you.
...since we saw you exhale for the last time.
...since we cleaned your body and got you dressed for the last time.
...since we left the hospital without you.
...since we smelled the fragrance in your hair.
...since we cuddled on the couch.
...since we read you any books, played you music, or sang to you.
And we Miss. It. All. Even the parts that weren't fun and were hard work - because we still had YOU.
Your amazing eyes. Your beautiful smile. Your cackley laugh. The softness in your voice. The way you made us feel when we were near you.
I want to see how you are now. The way we didn't get to see you here. I want to hear you talk. See you walk and run and play. Cook with Granny. Prepare for the future together. Do everything we didn't get to do together here.

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What helps in times like these?

I've been asked recently, "What did you do to get through when times were rough and the outlook seemed bleak? How can I help my friend who is in a similar situation to yours?"

My answer isn't full of short answers that are quick and easy. It's a daily choice and lifestyle that helped our family get through the last 12 years. Here are a few of the things that I did or that encouraged me during this time.

1) Our church family has played a major role with us in encouraging and supporting us. They have prayed for us, brought us meals, helped financially when needed and encouraged us.

2) I have chosen to listen to Christian radio. There are many songs that speak to the soul and help renew your mind and feel God's heart through the music. There are many songs based on scripture, and I could look some of those scriptures up in the bible (based on keywords) and learn some of the contexts the songs are based from.

3) It's also amazing how many scriptures from my Bible quizzing memorization, that just pop into my head when I am working and going about my day. I really listen to my thoughts and the context of the scriptures and how they relate - or what God may be telling me through them.

4) I listen for the ways God is leading my thoughts and listening to His direction. I would say doing this is probably the BEST thing she could do during this time. There were days where I didn't feel like doing anything and reading the Bible was too overwhelming. I remember being invited to a bible study that was a "read through the Bible in 90 days" right after my Megan went to Heaven. I was so overwhelmed by the huge daily reading schedule that it paralyzed any attempts at all. This was short lived. But,I kept looking for something that would help me move forward in this area.

5) I read some Christian-based books that are written about other believers' struggles, even if they weren't the same struggles I had. Some of the points in those books still had the ability to speak to me. I once read a book about a person's journey through weight loss surgery and received nuggets to ponder for myself even though I have never really had major struggles with my weight. Reading about different types of struggles will also help your friend to see the struggles that others face and not be so self-consumed by her own.

6) I read blogs where other people were facing similar struggles to mine. I read about where my "blog friends" were in their journeys and how they discussed and/or passed hurdles I was experiencing.

7) I read Rick Warren's "Bible Study Methods" book. Each chapter discusses a different way to study the Bible. "12 ways to unlock God's word." I tried out some of the new ways and see how each one fits with my personal preferences. (Some people have huge opinions about this author nowadays. But, this book is excellent in finding a personal style of studying for yourself.)

8) I was always looking for God anywhere I was. If I was shopping, vacationing, reading, or watching TV. God could speak to me through anything. Small quotes, meaningful discussions between characters on TV, artwork, seeing the beauty in God's creation, things other people chose to share with me.

9) A friend gave me "The One Year book of HOPE" by Nancy Guthrie. This author experienced infant loss twice. But, her book is written in weekly subjects that I could read all at once or once in a while and pick and choose which order to read the chapters in. (I haven't read all of it yet, but I can read read a nugget whenever I feel like I can.)

10) Our family created as many meaningful memories and pictures, and anything else associated with our daughter as we could in the time we had left. Nothing is more important than that. We believed that God would provide wonderful moments for us to treasure for the years to come.

11) We discussed and prepared our daughter for the end of her life and preparation for her future in whatever means we were able. We did this by talking to our daughter, playing songs for her, enjoying our time with her, and pointing our eyes toward Jesus together. This was not an easy task, but your God gives us the strength to do what we must if we asks God for it.

12) I knew who the people in my life are that I could talk to (that will just listen and not try to fix) and let out my frustrations, fears, joys, etc. Sometimes it helps to just hear yourself talk out your feelings, emotions, etc. to bring them to the surface.

People going through tough times such as this should know that they are going to go through some REALLY HARD and DARK times. Yes, admitting that is important to get through it. Every few months I see myself revisiting issues that I thought I had already lived and resolved. Everything feeling has a life cycle of its own. This is also true for the struggles of care that people may have before the end of their child's life. Anything can cause feelings to change at any moment. We as believers know that faith is not based on feelings but on keeping our eyes on the prize no matter how you are feeling. God is the Great Physician and Great Comforter to mend our broken hearts.

In a nutshell, I would say that anyone struggling with these issues in life should surround themselves with anything that God uses to speak to them, whatever that is. Also, to keep their minds and hearts open to hearing God's voice at all times. Also, I believe that these are the keys to be in constant communion with God and being in prayer incessantly. God wants to know our struggles and frustrations when we feel them. It is ok to let Him know how we is feeling, even if it means telling Him that it feels to us like He doesn't care or isn't seeing what is going on with us.

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Today...

is exactly 1 week before Monica's 10th Birthday. I love her so very much. We spent the day going through her dresser and closet and switching her wardrobe to warmer weather wear. It has been a bittersweet day. There have been many things that have reminded me that this is all the time I got to spend with Megan. We looked at so many outfits that Megan wore first. We put some away for good. Others, we put away for next fall and winter. Then, I realized we will probably have only one more season with older sister clothes to wear. Monica used to be so excited to get into Megan's new sizes. She always thought Megan had the cutest clothes and she hardly ever stained them or wore them out.

I am so thankful that we're not having an early birthday party today because our time fell short with her. I don't think my heart could handle it.

But, on the other hand, it's hard to wrap my mind around the fact that Monica will have surpassed her sister in age. Is she older now? Will she ask me that question and make me choose an answer? How long will it be before someone reminds me of this fact? And, will I have the grace to smile and nod? Or, will they get the brunt of my grief and pain?

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Thanks for the encouragement

God knows I need it. I have felt a little bit of the weight coming off my shoulders since my last post. I've been told that Social Workers are the hardest people to admit that they need help since they are so used to helping others. I should be able to fix myself, right? It's easy to see signs of mental health in others. Not so much yourself, I guess.

I've been reading lately and am trying to come to terms with naming some of the feelings I have. Grief is hard. As soon as you think you've turned a corner, it smacks you in the face.

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