A Post by Lainie. Disclaimer: RAW, EMOTIONAL FEELINGS CONTAINED.

I didn't sleep the night before.
I have always struggled with bouts of insomnia, be it from anxiety or just simple worry. Some nights I have difficulty sleeping.
That night was different.
I thought that something was wrong. Every part of me wanted to do something to fix how I was feeling, but the feeling just wouldn't go away. I didn't understand what it was at the time.
I got up in the middle of the night to get some water, and I found the front door to be wide open. I knew that must have been the reason my brain wouldn't let me sleep, and I closed and locked the door and went back to bed with my glass of water.
I slept maybe 3 hours when I heard them leave for the airport. I had given my mom a big hug and kiss right before she went to sleep, and I told her I love her and that I would miss her until she got back.
She wouldn't be back, though.
Bear with me as I write this, on the blog that used to be (and will forever still be) my mom's. It is oh, so painful, but I know that I need to get it out. I also feel it might be something some of you need to read.
I texted her as soon as I got up. It was about 9:30, and their plane was almost ready to leave. I sent her pictures of our dog, who had dragged me out of bed to lay with her. My mom said she felt anxious, because she always hated flying. I told her I loved her, to have fun, and that she would be okay.
Again, very painful, but if you're still with me I thank you.
I am blessed that that was the last thing she heard from me. I really am.
I will not go through the details of hearing about her death. It was the most horrible moment, and I could not do justice to explain. I just sunk into the floor, and forgot about everything else. I was also blessed that I was with Phoenix and his mom who were able to somehow take care of whatever I was in that moment. I could never thank them for all they did that day.
That day was so difficult. I know difficult seems like a rather trivial way to phrase it, but that is honestly what it was. It was harder than the other days, I think because instead of feeling singular emotions in waves like I do now, it was literally every single emotion going through me at the exact same time. Pain, fear, sorrow, anger, confusion, rage, emptiness. But I also felt incredibly blessed. That was another thing that was so difficult. My good friend for a long time and her mom came over as soon as they heard. My cousin was there, and some of my mom's friends for many years from our homeschooling community came, as did some of her childhood close family friends. My aunts and uncles came. Everyone was surrounding me and my family while we waited for my dad to get back to us.
Time was not even real that day. Phoenix just held me the whole time, and rubbed my temples periodically to try and ease all the physical pain that came from the intensity of emotions that had ripped through me. I kept falling asleep, as if my brain just had to shut down now and then to protect itself from feeling too much.
I was a puddle of a person, lying in the middle of the floor.
The people that surrounded me, just telling me to feel things and that there isn't a wrong way to act, and especially just being there meant so much to me. I felt like God had me in that moment right in the palm of God's metaphorical hand. And that, let me tell you, was a difficult feeling to have. But I remember noticing the forces I felt. And it was comforting.

We can flash forward to now, a little more than 5 entire months later.
Things are still SO difficult. But in a new way. It of course got better from that first day, but as I now understand, grief is not a linear process. There are ups, there are downs, but I am ultimately better after each low point.
The thing about my mom, though, is that she really was a self-named control freak. That woman was the most amazing mother, homemaker, and business woman I have ever been blessed to know. My family was so lucky to have her when we did, but I've discovered we can barely do a thing without her. I don't know how she did it all, when even a fraction of it is so hard for me to remember. My school payments, dinner at home, buying whole foods, keeping up with oils? Yeah, no. That is too much for one person, and she did so much more than just those things. I wish I could have her teach me all these things, but I have been learning. We all have.
I am glad that I am where I am now.
I wasn't proud of the things I thought the first few weeks.
The people I had picked who could have died instead.
Wishing we weren't so incredibly close, because maybe that would be less painful.
Thinking maybe it was all just a sick, twisted nightmare that I had so often dreamed.
The times I wished I wasn't the spitting image of her, because it was too painful to see her in me right away.
Wondering why, just why God would pick our family.
But God doesn't choose who the bad stuff happens to. Life is a mofo, and God can only help. That is my personal belief. And honestly, looking at my family and how strong we always have been, I know that sure, we were left completely shattered by the death of our beautiful Lori, but because our foundation is Jesus we have been able to rebuild together a lot better than we ever would have if we didn't have Him.
I wasn't proud of the things I thought those first few weeks, BUT I am proud of who I am now.
Not in spite of death, but because I know my mom lived every moment to the fullest. She traveled to all the places she wanted to see, many times even. She had a beautiful marriage, and did a great job raising her kids to be women she was proud of. She died of natural causes. SO many people loved her with all their hearts. She touched people's lives that she never even met. All around the world was she mourned, and hearts are still broken from the loss of her magnificence. And I'm so proud that I look just like her, too.
I miss talking to her. Getting her silly texts, receiving care packages here at the dorms even though it would save $5 to just drive 10 minutes over to here and hand it to me.
But it makes me feel a little better to see her friends post on Facebook about how they miss her, too. How they saw something and thought of her. How it's just not the same anymore to go through their news feed and not have her "realness". How she inspired people.
I looked up "lori stull blog" to try and get on to this page and write this tonight, and instead I found two blogs written about her by her good friends a short time after she died. So much love was out there for her, and we all were rocked by it. It's just nice to know that it's not just my family and me who still miss her. It's not just us who think of her each day, and wish we could just have a little more time.
It's all of us who had the honor of knowing her.
And I am proud of that. The magnitude of grief caused by one, single person is beautiful to me. It makes it clear just how inspiring, loving, hilarious, and fierce my Mommy was.
So yes, I am doing okay now. I have an amazing support system always around me. People brought food and whatever we needed the first few months, and it helped so much. It's been rough coming back to school. Harder than I expected, but I am making it. It will all be okay.

To wrap up this post (because I know it was all over the place), I just want to say that I can't STAND one phrase that I hear people say, mostly to other people going through a hard time.
"God never gives you more than you can handle!"
Well, my friends, that is complete bullsh*t.
We are absolutely, 100%, given more than we can handle. I'm just a person, and I can only handle so much. That is a simple fact, and sometimes it utterly sucks. Like, really, the DAY before Mother's day? F-you, world.
However, do not fear! I am not so pessimistic, just wait for my wisdom bomb that is about to drop...

I believe that sometimes, you are given way more than you can handle.
But we are never given anything that God cannot handle.

Boom! That was it. Get it? There is nothing that is more than God can and will handle.
That is what keeps me holding on. The fact that I can't carry this burden does not matter, because I don't have to carry it. I have God on my side, and Jesus suffered more than I ever will have to, and because of that my Mommy is up in Heaven right now. And I am surrounded by people here on earth who love me, and who will always help take care of me.

Thank you for your time, and I hope my first crack at this blog was worth your time and/or tears. I know it is hard for us all. I feel a lot better having got this all out, and I hope you maybe got something out of reading it. Maybe you didn't, and maybe not one person will read this! That would be okay. This was cathartic for me, and I have been meaning to do this for a while. I hope if you were friends with my mom and read this that you know how much you meant to her, and mean to me as well.

Much love,
Lainie

It's Hospice Time

Please don't be sad.  I know the title is sad.  But this post is actually about being blessed!

Most people think Hospice means the end in imminent...weeks or even days away.  But you can qualify for Hospice care if you are expected to be on this earth for 6 months or less.  And you can be re-certified if you surpass that mark.  I didn't know that.

My Dad has reached this point.  His dementia coupled with the new diagnosis of congestive heart failure mean he probably won't be with us for very much longer.

The first thing to point out here is that my Dad (the REAL guy, not this one with dementia) was always a strong believer in Jesus.  He helped show the love of Christ to hundreds of kids over about 25 years or so in a church Youth Club program.  And he was there so long that he did the same for some of THEIR kids! He was a Lay Leader in the church, very involved.  He literally helped run just about every aspect of his church.  He knew what lay ahead and that our time here on earth is temporary.  It's hard to feel very sad especially since I read Imagine Heaven by John Burke and I really learned what is in store for my Dad when he gets there.  He gets to be with my brother! He gets to be with his sister, and with one of his best friends who went ahead of him.  He gets to be with Jesus, and be 100% healed! No more pain.

Pain.  That brings me to what has been on my mind so much lately.  The pain of dementia.  Now, admittedly, MUCH of that pain is ours.  He has been gone for a long time now.  We see a little bit of him peeking through now and then.  But mostly, he is gone.  That hurts us, a LOT. What some people don't realize is that he is mentally in pain very often.  Anguish, sometimes.  There was a doctor at the hospital who was in charge of his care and this man didn't seem to understand that pain.  His goal seemed to be to remove as much of those calming medications as he could.  "He is too sedated," is what he told me.  Yes, some of those dementia related meds make him sleepy.  But you know what? Sleepy and calm is better than confused, nervous, angry, sad, agitated, frustrated. Can you imagine feeling all of those emotions all day and all night, 24/7?

Enter the Hospice team.  So far, these people get it.  His nurse today gave me a new perspective on his crankiness as well...he is quite possibly feeling physical pain somewhere, and he just can't describe it, so it comes out as these emotions.  So that is yet another view.  What has been incredible to me so far with Hospice is that they understand my Dad shouldn't have to feel all those nasty emotions these last months of his life.  They are all about his comfort and happiness.  It's such a blessing!  They also provide so much help, with supplies, equipment, medical personnel, bathing.  They make this process so much easier.

When you don't have to worry about the long term effects of certain drugs, there are different doses you can give.  My Dad had some extremely rough times in the past month (hospital and rehab center) where he was the meanest person you could imagine (NOT his pre-dementia personality).  He doesn't have to feel that way now, and we don't have to hear him talk that way anymore.  He has gotten physical a few times with my mom, nothing serious (YET...) and we can now avoid that with meds before he reaches that extreme level of agitation.

Thankfully, he loves my essential oils and lets me apply them to him, diffuse them, and I made him a little aromatherapy inhaler that he is enjoying.  I have become very into avoiding medicine for my own family whenever possible! However, to see him without it...it is NOT a pretty sight.  I will continue to oil him up, I will welcome the Hospice aromatherapist with open arms (and an open notebook so I can learn from him!)  We will use the oils as a supplement to his meds, and will gladly use everything medical Hospice has to offer to keep him calm and happy.

I shouldn't speak for my mom, but I am :)  We are both feeling relieved for everything they can do to help him.  It IS sad to know his diseases mean he won't be here much longer.  But he is already not here.  Dementia started taking him from us FOUR years ago.  Hospice will help him have peace, and that is just priceless.  He is definitely having more happy moments here at home than he did when he was hospitalized.  And most of the time, when he is angry, it's at my Mom and he thinks I am the big hero!  I am relishing those moments while my Mom just rolls her eyes.  We have to laugh, it's the only way to survive this!  One funny story, he uses eye drops often because of eye issues he has.  He lost his drops at the rehab center and she gave him the bottle from her purse when she got there one morning.  I came in a bit later, and he showed me the eye drops and told me the others were gone.  The next day, he was mad at my mom for not giving him eye drops, and went on and on thanking me for the drops.  (that SHE brought him hahahahah) So Brad and I are often the Golden ones.  hahahaha Mom!!

Brad helping him shave at the rehab center

I know we still have many challenges ahead.  But I have given it to God.  Well, that sounds past tense, like it's done.  I have to continually give it to God.  He never promised things would be easy and wonderful.  He DID promise this, though: "For I know the plans I have for you," declares the Lord, "plans to prosper you and not to harm you, plans to give you hope and a future." (Jeremiah 29:11)  I find comfort in this verse, because it tells me that everything will be ok.  My Dad taught me to trust in Jesus, and that is what I need to do.

This song gives me so much comfort as well.  Please give it a good listen!

https://www.youtube.com/watch?v=Cm_u9BjxahA

No Mom Guilt Here!

OK that title isn't quite true.  It's what I'm working toward.  The current situation is Brad and I leave for Germany in less than a week.  For 17 days.  Without kids.  During their birthdays.

*read the title, Lori*

Taking deep breaths.  It sounded like a great idea at the time!  We haven't been away, just the two of us, for years.  And this is REALLY away.  This is so away that if anything happens back home, there is nothing we can do.  It still IS a good idea!  It's just been a bit of roller coaster of emotions for me.  (And I am only speaking for me.  Brad has zero Dad Guilt...is that even a thing? Not around here.)  He had to make a trip to the lovely Augsburg, Bavaria for work.  FOR WORK....key words.  That means his flight, a week of hotel/car/meals are covered.  So all I need is a plane ticket and a few bucks to join in!!  How could I say no?  Then Brad went and threw a side trip to PARIS in there.  He sealed the deal.  We were there for a weekend 3.5 years ago when we lived in Germany for a short time.

I fell in love with Paris.  I know how cliche that sounds.  But it's in my soul.  I absolutely loved that city!  Even though we were there in Feb. and it was frigid out.  Brad knows the way to my heart, he always has.  He knew I would never let my Mom Guilt take over and prevent me from going with him.

He has always had a good understanding of needing to have dates and spend quality time together for our relationship.  He knew this would help us connect.  That's not always easy.  While it gets easier in some ways because we have older kids, there are still work stresses and family stresses and parenting an adult child with special needs stresses and aging parent stresses that get between us.  There have been times we weren't sure we would even make it.  But lately it's been good.  Even though we are past the huge issues (for now....hopefully forever, but let's be real....) we still don't always talk every day.  I mean REALLY talk. About our dreams for the future.  About our goals.  About US.  I never want to hear him say again "are you even happy? Because I am not happy." We have to do this for us.  Which actually IS FOR THE KIDS! That's why I am trying really hard to fight that Mom Guilt.

We leave on Lainie's 19th birthday.  We most likely won't see her that day.  She is living in the dorms at school, and it's only a few miles away.  But with her classes and us packing and getting to the airport, we probably won't be able to see her on that day.  We fly home the day after Lea's 22nd birthday.  That end date of our trip was non-negotiable.  Since Brad is flying from Germany to Hungary for a business meeting and not returning until the night before her birthday, there would have been no way we could have made it home anyway to see her on her day.  (Our start date could have been flexible, but ticket prices are much better on a Thursday!)  Anyway, I have never not seen their faces in person on their birthdays.  Never.  Mom Guilt....

They both agreed that they would be fine with this whole trip. No guilt necessary! But here it is, a few days away, and it's creeping in....

I need to keep in mind what my friend just told me.  She just went on an amazing vacation with her husband, something they really needed as well.  She said they connected in a way they hadn't done in so long.  She said she would pray the same for us....that we would find the same connection on our trip.  Wow, that warmed my heart! I know people will pray for our safe travels, and that is fantastic, but to know someone is praying for our LOVE....well, that made my day!

Life is good.  Brad has a good job that he does well with, and a recent promotion to keep him challenged.  My business is the most fun thing I have ever done professionally.  Our girls are amazing loving wonderful people.  Our parents love us.  But we all have stress, right? Brad lost his step dad and his dad within a few months of each other. I have blogged before about Lea's struggles with depression.  That hurts us, too.  Lainie has her own struggles...trying to be grown when she doesn't always feel grown.  My parents live in our house.  (SIDE NOTE: this is an incredible blessing in more ways than it is stressful!! But it's still stressful....) My dad's dementia is from the devil himself.  Sometimes it's hard to just chill out at home when there is all this on our minds.  And let's get down to it, People.  When you travel to fabulous places, without children, you are gonna have some great sex.  (I warned my kids not to read this....if you went against my wishes, Girls, this is your punishment. hahahaha)  Who couldn't use that? That is not always an easy thing, being at home.  While I am now blushing, I will say we all know it's true.  Part of that great connection between Man and Wife is sexual.  If you need to get away to get that part right, then by all means, GO!

OK this has taken a turn that is slightly uncomfortable.  Back to the Eiffel Tower...

We will celebrate our 24th anniversary in Paris...so much a dream come true that I can't even fathom it!  We will spend so much time together that we have to come back better connected!  And possibly a little sick of each other.  But I will take it!!  We will get to visit some of the greatest people we know that live over in Germany.  True friends, and by deepening our relationships with them, we deepen our relationship with each other.  We get to visit our German "daughter" Anne, whom I love almost as much as our biological daughters!! Someone who changed our family's life forever.  I know there will be some disagreements.  We ARE Brad and Lori after all.  (OK seriously, in all honesty, you may be shocked to find out that I am not always easy to live with.) I can already predict that we will argue about my Mom Guilt...I will tell him at some point that we shouldn't have come, it's so hard for me to be away from them and leave so much responsibility to my Mom and literally a team of friends to help Lea get where she needs to be.  He will tell me to just not think about it.  I will tell him I can't.  But then he will give me some chocolate or a Spezi (my fave German drink ever) and I will look into those blue eyes that still take me down...and I will be fine.  I will remember it's not all sunshine and rainbows, but you need the rain to remember how great those things are.  I will probably remember how we really almost lost each other a few times, but we kept fighting for us.  And I will remember that the greatest gift we can give our girls is for us to be happily married.  To each other.  haha.   Even if we have to miss birthdays and open gifts via FaceTime.  Even if Grandma wants to kill us by the time it's over because she has to take care of these monster dogs of ours.  Even if I have to give up control of things here for 17 days (but who's counting.)  He is worth it.  WE are worth it.

It's you and me until the end, Poopie.  (sorry that is your nickname. too late to change it now.)

Bread is really good in Europe.  This has nothing to do with connecting to Brad.  But I will also connect with Bread.

It Ain't Over Til It's Over

I was listening to my Lenny Kravitz faves today, and this song is #1 for me.  When he played it last summer in concert, I SCREAMED like a school girl and hugged Brad while jumping up and down, as if he had anything to do with Lenny's playlist! 

It Ain't Over Til It's Over

We have been through so much together.  (Me -n- Brad.  Not me -n- Lenny.)  Even from the beginning of US.  We lived in 2 different countries for our FOUR dating years!! That's not easy.  During that time, I lost my brother, my only sibling.  Brad lost an uncle he was close to.  Then we had the usual issues of people first married/first living together.  I remember saying at least a million times in those first years "I just want my own towel." Oh, and also "I just want my own toothbrush."  How does someone like me, that is annoyed by almost everything, marry someone like him who doesn't even care whose toothbrush he uses? I would absolutely rather NOT brush my teeth than use someone else's toothbrush.  Anyway, that's the small stuff.  I didn't think so at the time.  But it is.  Also, I have learned to keep my towel out of reach of the shower.  Muahahaha that will show him!

He put up with me through my partial bedrest during the last few weeks of my first pregnancy.  We survived...no we THRIVED...when we found out our baby had Down syndrome.  Many couples don't even make it through having a child with special needs.  This wasn't all fun and games, though.  We didn't see eye to eye on MANY parenting issues, with both girls.  His laid back, just let it happen personality didn't always mesh with my control freak, just let me do it and make it perfect personality.  (This may or may not still be an issue for us....)

There were always issues with our extended families.  Like most couples have.  I won't go into a lot of detail here, but there was usually something going on with our parents.  That time that Brad and my Dad were screaming at each other in our living room, and Brad yelled "F#*% You!"  Yeah, that was awkward.  (It all turned out ok...just so you know.)

"So many tears we cried, so much pain inside." Yep.  We caused each other so much pain, so often.  My high (and admittedly unrealistic) expectations of him.  His fear of disappointing me that led him to hide stuff from me, even if it was no biggie.  "So many years we tried to keep our love alive." Have you married folks ever heard your spouse say "Are you happy? Because I am not happy." And you can't even be upset that he isn't happy, because NO you are not happy? Those conversations were hard.  Gut-wrenching hard.

We attended a Marriage Encounter weekend.  That's where you spend a weekend listening to speakers  who talk about marriage, and you learn a communication technique where you write to each other.  It was a very helpful thing!! I highly recommend it.

Then came our BIG stuff.  I don't think either of us really care to share that here in a blog.  I can tell you that no one cheated.  But that doesn't mean it wasn't big huge marriage killing stuff.  I truly didn't think we would make it.  But we found a counselor and went through our first counseling sessions.  I don't know what that is like for other people, but we DID know we had a lot of love between us.  We decided we had to invest in us.  We didn't have much money at the time, and counseling is freaking expensive.  But we kind of made a date night out of it each week for a few months.  We rode Brad's motorcycle there, which is kind of intimate anyway.  It's hard to be mad at someone who has your life in his hands (or be mad at someone who is holding on to you for dear life.  Depending on which seat you are in.)  So it wasn't over yet!  We made it!

A few years after this, God led us to a new church.  Away from the denomination I had spent my entire life in.  We found Christ in a whole new way.  We learned so much, and we started putting Him in our marriage.  All those years of church going, but He was never at the center.

A terrible tragedy happened in our family...I have shared the details before.  Bottom line is that my 20 year old niece was murdered by her father.  This had (still has) a huge impact on just about every aspect of my life, including our marriage.  Not because Brad had anything to do with it, of course.  It's just that something so horrific seeps into your being.  But he stuck with me and helped me through the whole thing. And he understands the fact that this will always be a part of us.  Sad, but true.

Then came more BIG stuff.  Different big stuff.  Still no cheating,  don't worry kids!  But big nonetheless.  This time, we chose a Christian counselor.  Honestly, it was a bit awkward.  He was a very quiet dude.  We talked and spilled our guts and he never cut in to say anything.  Once we were done, he would remain silent for what seemed like 10 minutes, then he would drop these TRUTH BOMBS on us that just about took our breath away.  It was worth the wait to hear what he would say!  By helping us put Christ between us even more, he helped us stay married, which was obviously such a blessing.

Do we still have problems? No.  We are perfect and never fight.  hahahaha just kidding.  We argue, we disagree.  We just know that most of it is NOT big stuff.  He tells me more stuff (yay Brad!) and I try not to overreact (yay me!) and when we mess up, we forgive.  I'm sure the 24 years of marriage has made us more wise, but I know that one big change I made is that I pray for him all the time.  For work, for his situations that bug him, for God to just be with him and help him through his days.  I am sure this had made a big difference!

Why am I telling you this? Because over the past several months, marriage counseling has come up for one reason or another in a few conversations.  And people have thanked me for sharing that we have needed help, because maybe they need help, too, and it feels better knowing others have gone through some shit, too.  It's hard to believe that people have said to me "Oh, you guys seem so happy all the time!"  haha #facebook (As if I would post "Brad left his dirty clothes on the floor next to the hamper AGAIN" or he would post "OMG why won't she stop nagging me about those dirty clothes?")

"How many times did we give up, but we always worked things out.  And all my doubts and fears have kept me wondering, yeah, if I'd always, always be in love"

We may not always be "IN LOVE" every minute.  But Baby, it ain't over til it's over.

Not Fair.

It's the anniversary of a terrible day.  The day my brother Scott died.  27 years ago.  That sounds like forever ago.  It IS forever ago.  It's a lifetime.  I was just a "kid" then, 20 years old and in college.  I had just started dating the love of my life.

Scott was just 25.  He had 2 tiny kids who were not quite 2 and 3.  His diagnosis of chronic lymphocytic leukemia came in April 1989.  I was living in the dorms at school when my mom called me.  I clearly remember standing in our little foyer on the phone (back when phones were connected to the wall with a cord).  I remember her saying "the doctor says the average life span with this disease is 6 years."  I remember thinking, SIX YEARS? That is just not fair.  His kids will still be so young! OMG.  What I would have given if the 6 years actually came true....

It was just 2 short months before his body went into a blast crisis....when those horrible immature white blood cells blast through the body, the marrow not even able to make the stuff it needs to make.  I remember being alone for a moment in his hospital room.  He was intubated and so sick. He began to gag and choke on that tube.  I didn't know what to do.  I was 20.  (Would I even know now, at 47?) I cried and ran out to find a nurse.  Why didn't I stay and just comfort him? That's all he needed, to calm down.  It's just not fair that he had to go through that.  That I had to see it. He died a few days later after being "brain dead" for a time.  (A casualty of this is that even now, when people make jokes about being brain dead because they are so tired, this is where my brain goes.  To him laying there.)

You know what's really not fair? Since he was 5 1/2 years older than me, with no other siblings between us, we didn't really hang out much as kids.  When I entered kindergarten, he was in 6th grade, I think.  He was supposed to walk me to school, but as soon as we were out of sight from our house, he would run away.  *brothers*  He was just so much older, and a boy, and we really had nothing in common as kids.  He was also a trouble maker, and I was a good kid.  He ran away from home a few times, had trouble with the police.  I believe he was 12 when he stole our moms car and went driving.....Not the kind of role model a young girl wants to be with.  Sure, there are good memories of Christmas morning and stuff.  (Even those Christmases where I knew all my gifts, because he found them and told me, with me in tears.)  It's not fair that I don't have 8 million stories about growing up together.  Brad and sister can laugh like hyenas for hours about their 8 million stories together.  Scott and I just didn't have a lot of that.

Fast forward.  He gets married.  He has some kids.  And he becomes a great dad!  He was still a partier and was by no means an angel.  But he really seemed to enjoy being a dad.  I was in college and we started actually talking.  Like 2 adults.  I still remember when he called me for the first time EVER, I was in that same foyer at my dorm, and he called me to say hi.  He told me about being excited for a new job.  I was getting my mom's old car, and was giving him my old car (OK I was the spoiled one.) He was excited for that.  He asked me questions about my car which of course I didn't know the answers to.  "Um, it's white." I remember that feeling SO clearly to this day, being so uplifted that he actually LIKED me.  I always knew he loved me.  But now, we were peers.  We were adults.  We were becoming friends.  He liked me!  

Thankfully he met Brad.  Sometimes it's easy to focus on who didn't get to meet a departed loved one.  He never knew my kids.  Hell, he never knew HIS kids.  They were just babies.  He never knew their kids....his grandkids.  He has 9 of them!  NOT FAIR.  But what a blessing that even though he didn't get to know Brad very well, they did know each other for a couple of months.  

These days, my "it's not fair" tantrums in my head are all about my parents.  He isn't here to help us with this phase of life.  Quite frankly, it's a shitty phase. Dementia is so horrible.  Why isn't Scott here to help?  Make a place in HIS basement for our dad? Hold my mom while she cries, because while his body is still here, she has completely lost her soul mate? Why can't he be here to talk to our dad and try to convince him to turn that TV down before I lose my mind?  Why isn't he here to help Brad put locks on the doors to the furnace room, the electric panel, the sump pump because our dad likes to "fix" things? Why isn't he here to help our dad with the catheter he had?  Why isn't he here to just LIKE me again? Chat on the phone? Laugh that our dad brings out his talking Yoda toys to anyone who comes in his room, like a toddler? 

Brad's step Dad and his Dad both passed away very recently.  It's so sad, of course, and while I loved them both, too, his pain is different.  He has his sister to talk to about that, to share those memories, to discuss what to do to help their mom and step mom make it.  Insurance calls.  Banking.  Financial planning.  I take a backseat because it's not my place.  Brad helps me a TON with all of my parents stuff.  I mean, he is a saint.  Truly.  But it's not fair that I don't have Scott here to bounce ideas off of.  To drive to the hospital when my dad has issues.  To take turns.  I don't know if it feels this way for people who are only children.  I imagine not.  Lately I have just been having a big ole pity party that it's NOT FAIR that he left me alone in this.  I need someone else who has to deal with this crap with me.  I need my brother.

The pain of losing him is no longer with me every day.  I mean, 27 years is a long time.  It's not raw.  I rarely have those moments now, those split seconds where I think of something I need to tell him.  If you have ever lost someone, you know what I am talking about.  Time does help heal, for sure.  And I will get through all of this with Brad, my girls, my Mom, lots of friends and family.  I just wish I had Scott to lean on as well.

Black Hole

Feb. 2016

Some things are overwhelming and private and full of stigma, so we keep them to ourselves.  But at church the other day, the message was all about how God can take your terrible story and use it to help someone else.  I'm a sucker for helping someone else, so I am going to tell you a story.

First things first: if you are even reading this, it's because I asked Lea if I could write about it.  I wouldn't publish the blog without her reading it first and giving me permission.

A bit of background in case you don't know my family.  Lea is 21 and has Down syndrome. She is very active and just fun to be around!  She brings a smile to your face when she sees you! She is in a public school program that offers job training and life skills to adults with special needs.  While she doesn't have bad behavior issues, she does get herself involved in some drama at school that we could all do without.  She is very sensitive to other people's feelings and wants to please everyone.  These 2 things (drama mixed with wanting to please) have gotten her into some sticky situations.  She often feels very pressured by other students and allows them to make decisions for her.  In the last several months especially, she has come home very upset and crying.  But people get upset and cry sometimes.

We thought Lea was being a bit too dramatic, dragging things out that aren't even her problems.  So when she came to us with feelings of self-harm, we were quite shocked.  A young woman with Down syndrome? Hurting herself on purpose? No.  That doesn't happen!  We made an appointment with a new therapist since her former one "released" her awhile ago.  (We have a murder in the family that has taken much therapy these past 4.5 years).  We knew she should talk to someone.  We still weren't grasping the gravity of the situation.  The earliest appointment we could get was 3 weeks away, but that flew by as we were packing and moving.  Just a couple days before her appointment, she threatened to hurt herself again.  Admittedly, our reaction was not great.  Again, she has Down syndrome.  This doesn't happen to people with DS!  I have read a ton in the last 21 years about DS and what it comes with.  I have never read about situations like this.

Imagine our surprise when the new therapist not only diagnosed Lea with depression, but said she was on the verge of needing to be hospitalized to keep her safe!  I certainly lost it then.  I wouldn't say I didn't believe she was sad.  I just didn't realize it was so REAL.  I didn't realize the depth of her pain.  "It's like I'm in a black hole," she says.  The therapist decided that a hospital stay would be pretty scary for Lea, so she put her in our care with instructions to hide all the sharp objects in our home and not leave her alone at all.  Ummm.  If you haven't been in this situation, can you just think about that for a sec? The weight of that? (If you have been here, then you already know.)

Lea went to a local mental health facility for 7 school days instead of school.  She was with the adults in their program.  I know she heard some pretty adult stuff and problems from the other women.  But she did learn some good coping mechanisms and got some tools to learn how to handle her feelings.  She also got a prescription and that made ME very unhappy.  I hate drugs and chemicals.  Have you read the side effects of this stuff? It's just as scary as depression.  It can make it WORSE!!  WTH.  When I say that having her on this drug causes me anxiety, I am not exaggerating.  I spent years getting toxins out of my kids' systems and treating them with oils and homeopathy instead.  Don't make me put this crap in her body!  (and before you say "if she had diabetes and needed meds, would you be upset then?" YES I WOULD.  She is still on thyroid meds and it makes me upset.  Oils have halved her dose, and I am still working on getting rid of that medicine completely.)  There is a time and a place for drugs and when used on a temporary basis, they can be helpful.  But how many people are on drugs for depression just temporarily? Have we seen her mood improve? Yes.  But with several very unpleasant side effects.

The few people that knew about this have been so supportive and kind!  I get calls, texts, and even dinner made by a friend while we were in the depths of this!  I know we will receive more support once "the whole world" (aka Facebook) knows about it.  It's hard to share when it's depression or another mental illness.  I don't think there should be a stigma surrounding it, but there IS.  But if I hadn't shared with a few people, I wouldn't have had the support.  Lea wouldn't have had some people tell her "I struggle with that, too." I also am not ready to be a champion for this cause.  There are several things I preach about regularly including Down syndrome and how to make the world a better place by embracing it!  I knew that if I let everyone know about this, I will need to be ready for people to send me articles and maybe expect me to speak out about DS and depression.  I am writing this, and that is all I can handle right now.  It's too new and I am not ready to be the spokesperson for it.  Still, I need to tell the story.  And people need to know that reaching out for help is the best thing to do.

Our girl is hurting and it makes us hurt, too.

The point of this whole post is to let others know that depression can happen to anyone.  It doesn't matter if you are viewed as the "happiest person" I ever met.  Or if you have Down syndrome.  It's real and it can do such harm.  If Lea's story can help anyone, and I think it can, I want to share it.  And she wants to share it.

It's a big, scary world out there.  Just knowing others feel like you do can be comforting.

Sunburned Heart

July 27, 2015

It was on this day 4 years ago that we said goodbye to my niece Megan.  She would finally have some peace.

Almost 3 months prior, she lay sleeping in her bed early one morning.  Her father, who adored her for her 20 years, succumbed to what I can only believe is some sort of untreated mental illness, and beat her in the head with a baseball bat.

I know, it's hard to imagine.  You may even stop reading this, as the thought is unbearable.  Especially if you are a parent.

She lay in a coma for a long time, disfigured, unrecognizable except by her pretty purple nail polish.  She fought hard, she was a fighter.  A terrible infection.  Unimaginable injuries.  Many surgeries, including some that removed much of her brain tissue.

She was taken off life support and was let go.  Except that stinker hung on for 2 weeks!  I told you she was a fighter.  There was a sense of peace when she finally passed away.  Although as strange as it sounds, there was a part of me that still imagined she could recover.  She may never be the same, but we could all help care for her.  I thought I would be more relieved to know she wasn't suffering anymore.  But the finality of it was hard.

So, as you can imagine, this changed my family in ways too numerous to count.  In ways we are still discovering.  Therapy for me and my children has been very helpful.  But this is etched in our lives now.  It's a part of us.

Since it's been 4 years, and life goes on, there have been many times when I don't think about this every single day.  Almost every day, but sometimes I am going along with my busyness and I forget this wound is there.  It's like a sunburn.  It doesn't always hurt every minute, but you forget it's there and scratch it and BOOM you feel the pain.  I was feeling pretty normal awhile back.  No disturbing images in my brain of how Megan looked after this attack.  I was in even Pontiac, the city where her first hospital was.  Where she went to the ER and then stayed for about 2 months.  I had driven by here a hundred times since then and was fine.  But this one night, Brad had a band gig near the hospital.  We were driving home, and he drove a different route near the hospital.  I have no idea why this affected me.  I had a breakdown, sobbing.

Then there was the time we were going to binge watch The Walking Dead.  Violent TV shows have not been a good idea for me since this.  But it's zombies, right?  Totally fake!  I can take it.  Well, episode 1 starts.  I am not loving the gore, but try to stick with it.  Try to be normal.  Most of America watches and loves this show, I tell myself.  Then out comes the hero to fight off a zombie.  With a baseball bat.  He raises it above the zombies head.  And I hyperventilate.  Run upstairs sobbing, barely able to breathe.  Poor Brad, he was just at a loss.  He kept apologizing.  He just held me until I calmed down.  Needless to say, I have never seen another minute of that show.

There are so many times when someone jokingly says something about beating someone with a bat.  I know you may not believe that, but it's true.  They don't mean anything by it and have no idea about my sunburned heart.  It was fine a minute ago, but you just scratched it unknowingly with your words, bringing those images back up in my brain.

It's 4 years later, FOUR FREAKING YEARS.  And I cannot LOOK at a bat without thinking about this.  Our daughter plays softball on a special needs team.  And every single time someone picks up a bat, I am imagining what happened.  The force it would take.  The fact that it was his beloved daughter.  I mean, I try to be normal.  And I truly enjoy her games.  I get in the car, not thinking about Megs, drag my chair out to sit and watch.  And there goes that damned sunburned heart, getting scratched and hurting.

I would love to end this post with a nice little thought about how healed we all are.  But.  That will have to come later.  I pray it will.