March 24, 2013

Last post. What blogging has meant to me.

I had many scary thoughts when I contemplated starting a blog about sweet Erik.  Mostly, "no, I can't write," ... "ug, I don't want to be that transparent," ... "what on earth would I say?"

Nevertheless, I really wanted to find others out there who were sharing the same experience.   "Where are blogs with aging Downs adults?" I wondered.   "Are the parents/siblings of these individuals not computer people or are they working so hard to care for their loved one they're just exhausted?" Over the 25 months I've been blogging there have been a handful of people in the same circumstance who have reached back to me for which I'm thankful.

Now, looking back, I'm so happy I wrote.  This blog gave Erik a voice.  It helped us include others in his life, especially family members and friends who loved Erik but didn't live nearby.  It has given me a priceless journal of the last 2 years of his life.  I enjoyed sharing all the funny things he did.  Friends who hadn't met him got to know him through reading.  From this blog, people from many countries around the world read about him.  This boggles my mind.    

As I wind down this last chapter of "Hi, this is Erik," I thought I'd list my favorite blogposts and why.  But as I spent time reviewing all the posts it became real hard for me to choose favorites.  I loved revisiting the posts where Erik was having a good day and was determined to shower me with sweetness. The memories they bring back are the sweetest in the world.  And the ones where he'd wordlessly communicate something--precious.  And I loved telling you about his interesting life, expecially how much he loved food, laughing, teasing and singing.  His simple sweetness was real and writing about it became a privelege for me.   

I thank you for reading.  For commenting.  For praying.  And going through this journey with us.  Your comments encouraged me in ways I could never express.  You helped me not feel so isolated.   I wish I could give each of you a hug.

Reader, if you have a family member with some kind of disability, I'm sure there are many who would love to know what your days are like.  I know I would.  We need each other.

And because I will always love seeing the beauty of someone like Erik living his life to the fullest, I wanted to share this link to the story of a young man who has taken what he does best and makes other's lives richer.

So, that's all for now. Thanks and much love from me.

March 18, 2013

A few more thoughts. Epilogue #3

Over the past weeks I've been learning and reading about other's experiences with Down syndrome. 
 I watched a documentary about a Downs couple called Monica and David.  From it I'm more convinced that families with special needs are as varied as all families.  And those who care for them have to do what works for them, even though it may be different from what others might do in their shoes.   I also read a wonderful book about a family, the mother of which wrote about her pregnancy and expecting a Down syndrome child.  It spoke to me so beautifully.  It's called Expecting Adam, an exceptional story of God's plan for this young family and their son.  

It reminded me of a few years ago when I was seeking reassurance that God was there for those like Erik.  I know the Bible fairly well and know the verses of God's promises of care for the weak and Jesus seeking out the forgotten.  But on that day I was wishing there was a verse, illuminated in divine, yellow light, just for Erik and me. I was probably feeling weary and worried.  I started looking for commentary from religious sources and stumbled upon something from The Vatican on handicapped children.  Even though I'm not Catholic, it encouraged me.  It said:  "It is impossible to even entertain the hypothesis that God might have been "mistaken" when He created handicapped children.  On the contrary, we must say that God loves them personally and that these children, thus conformed to the suffering Christ, are the object of His special tenderness."   I felt better and wrote it in my journal.  And later, God did give me those special verses.

Since we're on the topic of God's involvement:  over Erik's life, we commented often to each other that Erik had protecting guardian angels around him.  I think of the countless times he had to walk back and forth to the bus-stop when it was dark outside or the weather was bad, when he'd take the bus all by himself to the mall on his days off to go to the movies or he'd fly by himself to visit our mom in Colorado -- he was always under God's watchful eye.  About 6 or 7 years ago, when Erik was living alone at his condo, he invited a total stranger he met at a bus stop to come home with him to hang out.   Erik, gregarious person that he was, wanted a new friend.  This man, we surmised, looked around Erik's condo, discovered he didn't have anything of monetary value and just left.  But that could have ended differently.  God's special tenderness and protection was at work that day, as it is for you and me.

Erik used to sit on the front porch of his group home waiting for us to arrive.  "Hey, are you so happy?" he'd ask.

A bit more to come.  Love to you.

March 11, 2013

What now? Epilogue #2

Over the past years, I found comfort in writing about Erik's day-to-day life,  about "Erik and me" -- a little team.  Now that he's gone  I don't really like writing only about myself but I figure there may be other readers out there who have lost "special" family members too.   So I'll try to share my thoughts a little more.  

 Since late Demember, I've swung between two feelings.  

#1:  what now? 

I'm a "task-fulfiller".  I was so accustomed to tending to Erik's care and managing his days.   Walking into his room, wondering how I'd find him.  Going to see him on Sunday after church and drop off his laundry.   Buying toiletries, new items of clothes, bringing him Cokes for his little refrigerator.  Taking care of his insurance, doing his taxes, arranging medical appointments for him.  Calling his care-givers. My sister and I pre-planning his funeral.  Full days, that stretched me.  Days are different now.  It's taken a few months for me to develop rhthym with new tasks.

feeling #2.   lay it down.
I felt like I have been carrying an invisible box around for a long time.  In it was all my concern, worry, and care for Erik's present and his future.  Now it's time to put the box down.  And it's ok to put it down.  And it's good to breathe without the worry.   And it's ok to move on to the things I put on back burners.   I'm a little lighter inside without the concern I carried.   And peace is there, a feeling of "I carried the box around the best I could."  And Erik is rejoicing in heaven.  I try to imagine it.  But it's so beyond our imagination.  Fun to try though.  I bet he's SINGING!

I've had 2 dreams about Erik.  The night we found out Erik passed away I dreamed a vivid dream that he was lost and I was desperately, frantically searching for him.   A few days later I dreamed he became alive again and he was still struggling with all his health challenges and I had to ramp up and start all the work of tending to him again.  I'm waiting for more dreams about him.  I hope they come.

Thoughts on Loss/End of life:

I went to get a Subway sandwich today where Erik and I had gone.  I'm in stores where I routinely bought things for him.  There have been memories of Erik all over my little community. I drive by his 2 residences and can see the windows of the room where he lived and struggled.  Sadness would come. When I drive by and see those windows, I have to turn to the Lord.  What a comfort to know Him at times like these, reach out to Him from the depths.   And He understands.
I know He understands because of what He whispered to my heart one second after I recerived the news that Erik was gone.  Two words kept repeating over and over in my mind:  "Unspeakable Joy...unspeakable joy, unspeakable joy..."  It was 4:30 a.m. and I had to wake up mom, call my sister and everyone else, but those words were there over and over.  It was a message from God to me of the state of Erik's spirit at that very moment, present with the Lord at last!  God is helping me turn sadness to thanksgiving.

Erik became like another of my children.   A child who was a grown up.  Someone we hadn't had a real conversation with in over 4 years.  And someone who became more like an infant at the end.  Couldn't feed himself, bathe himself and - near the end - couldn't sing anymore.   You can't help but learn something when you watch someone you love lose those things one by one.  I think I learned to be more grateful.  When Erik began to refuse food and liquid - and eventually medicine - we knew his time was short.  His body was getting itself ready for his final journey.  Hard decisions were made during those days.  In the last few weeks, keeping him comfortable ruled out.   I had benefitted much by reading a book called Final Gifts.  It's written by hospice nurses to educate about the end of life.  I've had time to reflect on the dying process.  Our bodies are made to receive nourishment.  When we're at the end of life we don't need that nourishment any longer and we shut down. As a Christian, we're made to need nourishment from God in His Word.  We die when we don't take that in.  God used Erik to show this to me in a real way.

more coming.  thanks for reading.  Love from me.

March 5, 2013

Hi again! Epilogue #1

Hi again!
I received this facebook message from a friend a couple of weeks ago. She has a sweet teenage son with downs.

Hey Liz! I haven't seen many posts from you. Just wondering how you're doing and dealing with Erik being gone. Still praying for you! I don't know if I told you or not, but his funeral was so great. I've never laughed so much at a funeral!

I responded:
Your note touched me so much--that you'd write to check on me. Thank you.
I am doing fine. Of course experiencing feelings of missing Erik, wishing I could see him. But immediately find comfort in knowing where he is. But doing fine. I'm new to this kind of grieving, and assume it will take time. I'm still tying up loose ends with his medical bills and I have lots of his things to go through in the garage when the weather gets warmer.
I've been wondering what to do with his blog now. Mike suggested I write one more post, like an "epilogue". I'm open to that idea but just haven't acutally done it. I think I'm sad to end the blog.
I love what you said about his funeral. I agree, the laughter we shared that day was such a dear, sweet blessing to all our family. I loved laughing about him and the thing is -- there were so many more stories we could have shared that would have lead to more laughter. Wasn't it wonderful to laugh at a funeral?
How's C doing?  Hug him tight for me.

She wrote back:
I think a final post would be great. I still think about Erik and you a lot. We are doing okay. C is doing great. Every kid in his high school got new ipads. He loves taking pictures and videos of himself on it. I'm planning on downloading some apps that will help him. A friend of mine who works for the Bureau of Education and Research sent me a thick book full of apps for special needs kids. C just got done with basketball and is going to try soccer for the first time. He's playing for a team in Coppell. He's gone to one practice and their first game is Saturday! His school's "Grand Ball" is coming up in March, which is like a special needs prom. He is so excited for that. He dances all night. I'm sure I'll be posting some pictures from that. Take care!

So, encouraged by her and others, I'm back.  Even though I haven't written here since December, this place was never far from my mind.  I just needed time and space to experience "life now".  

And I didn't really know what to say.  
And I am sad to end this blog.

After reflecting, I decided - I will write more.  Just a bit.  I have more to say about individuals who are like Erik and my friend's son.  And how God uses them so beautifully.  
So, ok.  This can be Part 1 of The Epilogue.  :)  Thank you for reading.   Love to you all.