I had no idea...

Being a caregiver is hard. Being a caregiver of an intellectually disabled adult is even harder still. But being a caregiver of someone who cannot be civil or have any concept of showing appreciation is exasperating. Even though I accepted this appointment as guardian knowing he had limitations, challenges, and behavior problems, I really had no idea how taxing this would be emotionally and spiritually. Over 20 years ago, when our father asked me if I would take care of David when he was no longer able to, I agreed wholeheartedly to be his guardian and caregiver, and asked Dad what I needed to know to take care of my brother.  His answer? "Barb, you have no idea." That was it. I thought, "Well that is a strange answer! That's it? 'You have no idea'? Really?"

Fast forward to the present, I still have no idea what to tell people who ask that same question, so I too say, "You have no idea." Period. Nothing else. Just that.  I have tried to define the person that is my brother, to describe his personality and quirks and issues and care needs. But all people really see is whatever persona David presents upon that first meeting. I had no idea how exhausting and overwhelming this journey would be. To provide total care to a 73-year-old child trapped in a man's body. Who upon meeting anyone new, says, "Hi, I'm David." What does that mean? Who is David?

David is the oldest of five siblings, my sweet brother, and I love him dearly, with all his issues and idiosyncrasies. He was born with his disability, and our mother, who was mentally imbalanced and cruel, abused us all, but most of all, David. When she and our dad divorced, she was awarded custody of us, but after a year she put 13-year-old David, a pillow, and a suitcase out on the porch, locked the front door, and called my dad to come get hi "$%*! son!" as I watched from the living room.  My dad and stepmom took care of him for the next 53 years, putting David's needs above their own, even moving three times to ensure he had the best special needs programs. When Dad's 94-year-old body began to fail on New Year's Day, 2018, David moved in with us; since that time I have been his caregiver, guardian, trustee, and surrogate parent.

By the end of 2018, I knew exactly what my dad meant. Or thought I did.

I had no idea... how sweet David could be. He always remembers birthdays, anniversaries and holidays, and hugs everyone (and anyone) he meets. He loves music, old TV shows, food, bowling, and looking at photo albums. He saves everything anyone gives him, whether a picture, card, memento, or ratty t-shirt; I know because I have had to purge his closet and dresser numerous times. He has photos in his wallet folded so many times the images are barely recognizable. 

I had no idea...about the depth and breadth of his love for music. He owns over 200 record albums (yes, vinyl record albums), both 33s and 45s, and well over 200 music CDs; his most prized possession? His record player. The music genres span not only decades but centuries: classical, jazz, big band sounds, Motown, disco, movie soundtracks, patriotic tunes, crooners, ballads, R&B, soft rock, and some country. Herb Alpert and the Tijuana Brass, Elton John,  George Gershwin,  Louis Armstrong, the Carpenters, Beach Boys, John Denver, KC and the Sunshine Band, Frank Sinatra, Smoky Robinson, Dean Martin, Michael Jackson, and ABBA are in his repertoire, and he loves to sing along with each, as loudly as possible. Mention karaoke or a concert and he is all in!

I had no idea...how many memories he is capable of recalling in perfect detail: the name of his elementary school, his bowling scores,  Special Olympics achievements, who gave him what for Christmas, and special moments with Dad. One day he recounted a trip to hear the Cincinnati Pops Orchestra in the late 1970s, recalling details about the conductor (Erich Kunzel), the music played (Rhapsody in Blue and some Duke Ellington jazz), and the surprise appearance of Arthur Fiedler of the Boston Pops at that concert. Intrigued, I looked up all the names, and was shocked at the accuracy of his memory recall. 

I had no idea...about the challenges he faces on a daily basis, both physical and mental, and how frustrated he gets because he cannot understand why he has these difficulties. As he has aged, he is experiencing what all of us will experience one day--problems with hearing, vision, and coordination, all of which create a lot of angst. Hell, I don't even understand it because, like David, I too feel my body has betrayed me somehow. Routine and structure are his best friends; any change, no matter how slight, throws him for a loop. He once spent over an hour trying to get his alarm clock to reflect the exact same time as his wristwatch (it was two minutes fast), cutting his hand in the process, ignoring the blood dripping on the dresser and floor, until I took the damn thing away from him, so you can imagine how crazy he can get because his body won't cooperate with normal functions.

I had no idea...how much I would learn from this "intellectually developmentally delayed" brother of mine, the joy and laughter he would bring to our lives, yes, amidst tears and frustration. The three of us--Alex, David, and I--enjoyed life together, a life of moments ordinary but made special because we shared them. I learned more about myself and my faults through my relationship with my brother than I learned from any other person; some of the things I saw in myself were not so pretty...but to David, I was always his "amazing, beautiful, best sister ever." Seeing him with new eyes--actually the eyes of my much younger self, when he was simply my big brother--I realized how special David is, that he too was created in God's image.

I had no idea...how much I would miss him when he was gone. 

Death Knell of a Friendship

When I was seven years old we lived in my nana's house on a little street in a nice neighborhood where there were lots of families with children and we'd play outside with each other; my best friend lived next door--Tina Tenunfeld. We played dolls, walked to school together, and swore we would be friends forever. That was 1962. We moved the following year and I haven't seen her since.

Starting in fourth grade, I attended St Clare elementary school for the next five years, then McAuley High School for freshman and sophomore years and was friends with four other girls for those years; we hung out at each other's homes, were in Girl Scouts together, passed notes at school when the nuns were not looking, and went downtown to go shopping on weekends. We were convinced we would get married and have kids, live on the same street, and grow old together. That was 1970. Never saw those girls again.

In 1971, I changed schools in the middle of my junior year in high school because I moved in with my dad and stepmom--that was rough because the school was huge, with over 1,000 kids in the graduating class. I got on the school bus on my first day, and sat in an empty seat by a window. At the next stop, a girl with long, dark red hair got on, laughing and talking to everyone else on the bus; she sat down next to me and introduced herself. "Hi, I'm Jenny!" That was the introduction to a beautiful friendship--we were inseparable! I was maid of honor in her wedding (to which I was over an hour late!), and we were such good friends she refused to start her wedding until I got there, breathless and crying. We still send each other Christmas cards, connect occasionally on FaceBook, but other than that, nothing. The last time I saw Jenny was probably 25-30 years ago. We were "best friends."

Through the years, I have met thousands of people, become acquaintances with many, friends with some. Friends have come, friends have gone, but few have remained through the years. Some have simply moved away or grown apart, with only 3 or 4 leaving as a result of a disagreement or misunderstanding. But most? Well they simply outlived the friendship due to not having anything in common. Right now I probably have less than 10 really good friends--people with whom our friendship is an easy, fluid thing. We understand each other, celebrate each other's joys and cry together over loss. We laugh, joke, pray, and honestly would do anything for the other. I cherish these friends and the relationships we have. At my age, great friends are worth their weight in gold.

Sometimes, however, someone who seems to be a friend, maybe even a "best" friend, is not what they seem, or our lives bifurcate so abruptly that the friendship becomes strained. Communication that was once easy and effortless becomes less frequent and mundane. Phone calls and video chats are replaced with text messages and tags on FaceBook posts, and this person you thought was your BFF turns out to be someone with whom you have nothing whatsoever in common, nothing but having known each other for two decades or more. But you hang on, resuscitating it, even shocking it with the defribbilator paddles every so often, in a futile attempt to keep it alive. Finally, however, you realize there is nothing more to be done. There is no cure, no magic elixir, no miracle that can revive this "friendship." And you look back. And realize you wanted a best friend so badly that you yoked yourself to a person with whom you had nothing in common. Sure you had fun, you loved each other's company, but in the end, you were both so diametrically different, so toxic to each other, it was a wonder it lasted as long as it did. 

The older I get, the more I realize what a true friend should be. A true friend shares commonalities; in my case, we must share a love for Christ.

"Know this: In the last days perilous times will come. Men will be lovers of themselves, lovers of money, boastful, proud, blasphemers, disobedient to parents, unthankful, unholy, without natural affection, trucebreakers, slanderers, unrestrained, fierce, despisers of those who are good, traitors, reckless, conceited, lovers of pleasures more than lovers of God, having a form of godliness, but denying its power. Turn away from such people." (2 Timothy 3:1-5)

"Cast out the scorner, and contention will go out; yes, strife and reproach will cease." (Proverbs 22:10)

"Make no friendship with an angry man, and with a furious man you will not go, lest you learn his ways and get a snare to your soul." (Proverbs 22:24-25)

You’re never too old

Wait, what? How old am I??? 

Seventy. That’s right. Seventy years on this beautiful planet God created for us to enjoy.  Seventy years of laughter and tears. Seventy years. Let me say that again. Seventy years. It blows my mind! I don’t feel 70, although I have no idea how 70 should feel. I don’t think I look like I’m 70. My hair isn’t grey yet—the bonus of being a blond. Sure I wear progressive bifocals and hearing aids, I get a new age spot every other week (usually on my face), my feet, hips and butt have spread, and Newton’s Law is proving itself on a lot of other body parts. But to have the privilege to wake up every morning for the past 70 years is amazing. 

God continues to surprise me with his goodness and challenge me with his will for my life. Here I am, 70, and he still has plans for me! How amazing is our God that he trusts his work to an old woman! 

When Helping Hurts

A few years ago I heard about a book titled the same as this blog post, and I remember thinking, "what a stupid title for a book!" I mean, how does helping hurt? Who does it hurt? Who is being helped? Who is helping? Well, turns out the authors wrote about how to help  alleviate poverty without hurting the poor, all from a Christian perspective. Never read it myself--I am not in missions or dedicated to alleviating poverty, so it never appealed to me. However, when I sat down tonight to blog more about the situation in which I am embroiled right now the words "when helping hurts" seem to be the perfect intro.

Everyone needs help, whether they want to admit it, ask for it, accept it, or not. When I was growing up the radio was filled with songs about it: Simon and Garfunkel built a Bridge over Troubled Water, the Beatles could always Get by with a Little Help from their friends, Bill Withers told us to Lean on Me , Louis Armstrong croaked about What a Wonderful World we live in, and Carole King assured us You've Got a Friend.  (Yes, I am dating myself with those references, and I am sure there are more current ones...but I am comfy with the oldies but goodies.) 

Not only will everyone need help with something or someone at some time, but most of us in the human race want to help, especially those we love, the less fortunate, victims of disasters. Most of the time we offer our help sparingly, rationing out whatever resources (time, advice, money, energy, shelter, physical needs, etc.) we can give without hurting ourselves, and then go back to living our lives. 

But what about when someone needs more help than that? More than the clothes I outgrew, extra canned goods from the pantry, a couple hours a week, or a few dollars I would have spent on some silly Amazon purchase? What if someone needs all of me? What if I have to completely shift my focus, redefine what is important to my life, rethink my goals, and retool the vision of my foreseeable future? What then? How do I put the brakes on my life, my wants, my vision, and my (yes) selfish, comfortable habits and reroute my life without resentment, grief, anger or pain? And, more importantly, how am I going to hide all those feelings from the person(s) I am helping? 

When helping hurts. 

Lamenting and grieving...both are intertwined with any changes we make, buit especially with sacrificing oneself for another. To not recognize how essential and natural grief is would be pointless, creating resentment or providing ineffective, inadequate help. Helping by sacrificing ourselves, our wants, our needs, our dreams, does hurt, and to deny it is just plain stupid and hurtful to ourselves; it would be like telling people at a funeral to not cry, or to dismiss the sadness a friend feels when he does not get the job he wanted. So I count my blessings, yes, but I also count my griefs, my losses, my sadness, and ask God to help me give them to Him to relieve--because God knows. We have no farther to look than the cross, the place on Golgotha where God sacrificed His only Son to help us to realize how much that helping hurt God, Jesus, and those around him that day.

Not only does helping hurt the helper. Helping often hurts the person being helped: guilt, shame, embarassment, depression, a sense of failure, anger...all of these emotions bubble up to the surface, ready to erupt at the slightest hint of an offer of unsolicited help, even help that is desperately needed and sincerely wanted. If you have ever been the recipient of a truly heartfelt, selfless act or gift, you know what I mean. We want the help, we know we need that help, we appreciate the help, but damnit we would much rather be the master of our own ship, and do everything ourselves with no help unless we ask for it, and then only from those who have no problems themselves (ha!). It boils down to pride. Simple human pride and our obsession with wanting to be in control. Accepting help takes away the control, bruises our pride. 

When helping hurts. 

What am I learning through this season? That sacrifice is hard, helping unconditionally ain't easy, and I am not as magnanimously unselfish as I would like to think I am. Change is hard, I am stubborn, and I still have a few idols in my life. When someone I love hurts, helping her hurts us both. We both need help from above to resolve it by giving it to Him.  That is the hard part...giving up the grief, the hurt, and the loss. Humbling--the more I grow, the more I realize how prideful I can be, and how often I try to tell God how this "helping thing" should look.  

Just celebrated my 70th birthday, too...you'd think I would know better by now. 

"And he said to all, “If anyone would come after me, let him deny himself and take up his cross daily and follow me. For whoever would save his life will lose it, but whoever loses his life for my sake will save it." (Luke 9:23-24)

Dealing with the unexpected

Life. It throws all kinds of things at us--good, bad, horrible, wonderful. Does not matter who you are, where you live, your age or your income, life will sneak up on you and take your breath away. At times you may be amazed and excited and can barely speak because of the blessings. But other times, you get dealt such a horrible blow, it knocks the breath right out of you like a punch in the gut, or like an elephant sitting on your chest. Everything seems okay, something happens and you think you are handling it, that it will all come together, when BAM! Life turns completely upside down, your world is on the brink of collapse, and you have nowhere to go, no one to turn to. Your situation is hopeless, you are lost, there is nothing you can do. Even Christians with strong faith get sucked into the pit of despair. 

The past 18 months have been a test of our mettle, stretching our faith to its absolute limit. And right now, I am having trouble holding on. And lost as to what to do, how to help, unable to wrap my head around this. This new family crisis threatens to crush all of us.

Our son-in-law, husband of our daughter, father of little Sophie, is in the Navy. He has been stationed out west on an unaccompanied tour for nearly two years while his family is in Mississippi. Last year he thumbed his nose at some Navy regulations, covered it up, and when he was discovered, tried to delay the inevitable punishment by committing a crime. A crime of which he thought he could manage the consequences, but it got worse. He got caught, and has been on administrative hold for nine months and faced a court-martial this week. We could not do anthying to fix it, to mitigate it, other than be with him this past weekend, testify on his behalf, and then wait for the outcome. 

That outcome came this evening. His sentence: 12 months confinement, reduction in grade (rank) from E-7 to E-4, and a fine of over $30,000. Although we were prepared for it, and though we knew it could have been worse, that news has knocked the breath out of us, especially his wife. The financial burden is cataclysmic, let alone the shame, embarrassment, and anger over his actions and its consequences. The impact on their marriage, their relationship will be huge, and can only be healed with time and lots of talking. And prayer. 

We knew 9 months ago this day was coming, and struggled with the decision of how to help, how to be there for our daughter who now had to get a job, find healthcare and benefits for her and her daughter, and rethink her entire life. We thought about the issues she would face, and face alone. We knew what we had to do; we simply did not want to do it. Not now. Not in retirement. 

Then we remembered we are only here for the blink of an eye, a moment in time; we are here to help others, especially those whom God has given us to love and raise. So we are buying a house in Mississippi, four minutes from our daughter, so we can go back and forth and help wherever we can--childcare, daily chores, home maintenance, finances, and most of all, to be the light to lead her out of the darkness of this horrible situation.  

"God is our refuge and strength, a very present help in trouble. Therefore we will not fear though the earth give way, though the mountains be moved into the heart of the sea, though its waters roar and foam, though the mountains tremble at its swelling." (Psalm 46:1-3 ESV)

Mother’s Day revisited

Today is Mother’s Day. At least for another 118 minutes here on the West Coast. I’m spending Mother’s Day this year in Bremerton, Washington, with my husband and son-in-law. We had coffee at a nice little cafe, then lunch at an Indian restaurant. When I couldn’t get a contact lens out of my eye I asked them to drop me off at an urgent care (where I was able to remove it), then took a short nap while the guys explored the area. Later I enjoyed a margarita and queso dip with chips while the boys ate good Mexican food in downtown Bremerton. Good margarita too. 

But I’m not here to eat food or sightsee. Not here to shoot the shit about life in the military. My son in law, the husband of my youngest daughter and father to Sophie, faces the fight of his life in two days. Alex and I are here to support him, to go through this with him, to love him and let him know we are here for him. 

Mother’s Day. In Britain it’s called Mothering Sunday. And mothering is a bigger calling than nurturing our own children. It’s about recognizing those who need nurturing and support. Filling in for mothers who cannot be there even though every fiber of their beings ache to be. I’m here for Ben’s mom today. Because she cannot be. 

Drowning in my tears

• Tears of regret for things I should have done but did not do, for things I did but should not have done, for things I did but could have done better
• Tears of sadness for the state of the world, for the hate and dehumanization I see every day on social media, for lost and damaged friendships, for friends and family who do not love Jesus
• Tears of frustration for my inability to calm myself and my lack of faith when things fall apart
• Tears of resentment towards my sisters who have hurt me and betrayed me,  shunned me, and have no responsibility or even desire to help us, and towards my brother for needing me to help him
• Tears of confusion with today's convoluted bureaucracies in education, health, and social services when those things should be simplified to allow equal access to all
• Tears of anger towards believers who spew hate at those who are different, especially nonbelievers clinging to sin, when instead believers should be loving them instead of pushing them away
• Tears of shame for my actions and words and thoughts that are anything but Christ-like
• Tears of hopelessness when I continue to hit wall after wall 
• Tears of anxiety when faced with more than three things to do a day
• Tears of grief over the loss of our parents, and the loss of my family

But then...

• Tears of thankfulness to my husband for his support and love even through hard times
• Tears of joy when I think of my beautiful daughters and the wonderful women they have become
• Tears of happiness every time one of my granddaughters calls me and wants to talk to me
• Tears of amazement over God's faithfulness in answering my prayers
• Tears of love for my husband as I lay in his arms every night
• Tears of pride for the children I tutor, children who work so hard to overcome their challenges
• Tears of wonder for the beauty and majesty surrounding me 
• Tears of joy for my salvation and assured place with God for eternity