When Elderly Parents Fade

(My family when we were young)

I've been blogging about child loss.  This week's focus will be on a different kind of loss.  A few years ago, my vibrant, hard-working father started to fade.  The doctor diagnosed him with senility.  He could no longer work as he had.  He couldn't drive as he always had.  He couldn't learn or remember.  As he walked away from his last job and mourned the loss of his license, he still tried to function and did a pretty good job.  But as the years passed, he became less and less eager to get out and about.  He'd go to movies then return to his bed, his TV, and his beloved little Pom-poo (Pomeranian poodle) we brought him and that he loved with all of his heart. 

(At the Bear Lake Beach, camping with Mom, Dad, our Pomeranian, and Dad's dog.)

A couple of years ago, we knew he was fading and took him and my mom to southern Utah, where they both wanted to go to see Zion's and Bryce.  We've taken him on a few little adventures over the years because we knew he had a traveling bone.  Over the last year, he's increasingly faded to the point that his only opportunity to see the light of day was periodic trips to the movies and walks with his dog.  On July Fourth, most of my full siblings and I got together with Mom and Dad for a barbecue.  My unstable-footed father rolled down the last two steps and broke his foot in two places.  He got out even less, mostly staying in bed. 

(Flying away for vacation)

All of his life, he longed to see Disneyland, but they never could afford it when he was young, and then through his first wife plus four kids, his brief second marriage, and his marriage with seven kids to my mom, he never could afford it.  So we, two of his daughters and our families and one of his sons and his family, took him to California.  We helped my elderly parents pay for Disneyland and their hotel.  We surrounded him with love as we celebrated his life and 78th birthday to come, doing just what he wanted to do. 

(Dad enjoying Disney with us.)

He only did California Adventure, Disneyland, a beach, and church while there, spending the rest of the time in bed.  He fell on the slick floors of the hotel a couple of times.  But he came back okay.  We got him home.  He and Mom drove up to my brother's house to pick up his beloved Pom-poo.  Mom went out for a few minutes, then she came back in to find him speaking incomprehensibly, in a way that seemed to indicate he'd just had a stroke. 

Over the last several days, he's been tested and prodded as all family that could rushed to visit, including three kids and some grandkids from his previous marriage.  We have started to pull together to support him.  It turns out it wasn't a stroke but possibly a seizure, though we're still not sure. 

(My Dad over the years)

All I know is the dad I've built a fairly close relationship over the years, the dad that went from a distant, angry tyrant, to a soft, sweet grandpa to my kids, the dad with whom I joked and played pinochle with, the dad that could be hard and sweet by turns, has become like a small child, frustrated in this shell, which is all that is left of his body.  He can't move much but still struggles to get around when the hospital staff won't let him because he could cause more damage.  He is used to being able to get out and do when he wants, even though he mostly doesn't want anymore. And now, no one can understand much of what he says.  He's stuck in a place where strange faces drift in and out of his consciousness, some of which he feels like he should remember.  He's become helpless, like a small baby, but with memories of being so much more.  It hurts to see him like this, but I'm thankful he's not gone entirely.  Not yet, but who knows what tomorrow or next month or next year will bring?  Meanwhile, my mother is left alone, trying to support him and deal with an empty house.  I'm thankful we could be there for them, but it's hard not to be able to do more. 

I miss him.  I miss my daddy and wish I'd hugged him a little more, talked to him a little more often, just given him more of myself.  I know when he leaves here, he'll go see my brother, who he loved fiercely and who died the month before Alli did.  I know his mother and several other family members are waiting to embrace his return.  But in the meantime, we'll do the best we can for him.  I just wish we could do more. 

An Angel's Birthday

I watched someone I know approach her angel's birthday in fear and trepidation and then have that day fulfill every fear and every expectation for a terrible day.  I saw her pain, her celebration of that child's life through pictures, and above all, the inclusion of others through an invitation to celebrate her little girl's birthday through a joint birthday party.  It was a beautiful, heart-rending thing.  Few things bring back the pain more than birthdays and angelversaries, the day on which the angel got his/her wings. 

I saw all of this from a distance, but my heart ached as I knew at least a part of the pain that family was undergoing.  Each person's loss is unique, and each person's grief hurts in a unique way.  At the same time, there's a unity in grief.  Those who have been through it know what it is to be in the empty arms club, to feel those empty arms and long for one person alone to fill them. 

It warmed my heart to join in the outpouring of love and support for this family.  I know nothing will make that pain any less except time and the healing touch of Jesus Christ.  But I also know few things help more than love, support, and prayers when days like this come with their accompanying sense of pain and renewed loss.  It brings me peace knowing they're getting that support they need.  I wish there was anything any of us could do to make that pain go away.  But it helps to know there are people supporting for you, pulling for you, standing by when these painful days come.  And that's what makes these days survivable. 

Another Holiday Season

Anyone who has lost can tell you holiday seasons are hard.  You tend to feel the absence of the one you have lost more than most times.  We haven't gotten very deeply into the holiday season, but so far, this doesn't seem as bad as some of the other seasons.  It doesn't seem as painful.  Maybe it's because I'm busier than most times.  Maybe it's because other events going on in my life or the world make my pain seem small by comparison.  It's hard to say why.  I just hope my pain stays this muted for the whole season.

As I have done for previous years, I will seek out opportunities to serve.  But I feel less compelled to do so for my sake.  I'm not having to bury myself in service to survive.  The things I do this year are for others and for others alone.  I will still write down services we as a family do and put them in a jar as a gift for my angels to be opened Christmas morning.  Alli and the other angels are still part of the family and always will be.  I'm not sure what's different about this year, or if the emotion hasn't stricken yet.  I guess we'll see.  In the meantime, I will continue to search for ways to make others' season just a bit brighter as I go about my own                                                                                                          

Gratitude

I have had some hard days recently.  But I know that I have to focus on gratitude for what I do have rather than on sorrow for what I don't or for what I've lost.  When I think back over all we've been through with my baby's death and five years of miscarriage, I'm tempted to fall into a dark place of pain and sadness.  It would be easy to do.  

However, this week is Thanksgiving in the US.  It's a time to reflect on all we've been given.  It's time to invite joy in by showing my living children how much I appreciate them by spending more time with them.  It's time to hold my husband and those two sweet kids close to my heart and focus on the joy that comes with counting my blessings.  Thanksgiving is about more than food.  It's about cherishing the moments with those we love.  It's about making memories.  And this week, I am determined to cherish every moment and make wonderful memories.   

Healing Conversation

I have had healing conversations before, chats with people who make me feel understood and my concerns appreciated.  This week, I had one of the more healing discussions that I've had in a while. Just after my baby died, I joined all these support groups online and in person because that's what I needed at the time.  I haven't needed that for a while.  But I've also been a bit stymied about what else I could do to seek healing.  I have done everything I knew to do including reading books on healing, studying scriptures, sincerely praying, joining support groups, talking it out, and writing my pain.  I purchased a book I have been told I need to read about healing spiritually, The Infinite Atonement, so that's one item on my to-do list.  But otherwise, I was at a loss as to achieve forward momentum.

Then through a series of Providential events, I ran into my sister's friend who had lost her baby less than a year ago.  I was impressed with how much peace and joy she was able to attain immediately.  She had sacred spiritual experiences that helped her, but it seemed like a gift from God that she was able to accept and find peace with her loss before she even left the hospital.  Within a short time of her loss, through angelic visitations and inspiration, she was at a point where she could find joy in the memories rather than ache over her loss.  I'm sure she still has down times, but her healing process was nowhere near as rocky as mine has been.  I am 6 years out and still haven't found the joy and peace she received right away.

She hit upon a possible cause for this.  Just after our baby died, the state attempted to tear apart our family.  Through purjury, tampering with evidence, and other unlawful actions, they put my husband and I through hell for power and financial gain.  I won't go into details at this time, but needless to say, the situation made graceful, immediate healing impossible.

Through a series of miracles and divine interventions, we were eventually delivered from their power.  But whenever we start to think about our baby, the pain of that series of injustices we suffered eats at both of us.  I read these books about healing and finding consolation after loss, but the authors don't talk about complicated healing.  They don't talk about how to find joy and light when your world is plunged into darkness beyond just loss.  That's the book I need to write one of these days, particularly with the help of my husband since so little has been written by fathers of angels.

My new friend suggested that we write out the events of those months in all their lurid, ugly detail and then burn that record, bury it and let it go, forgive the people and events involved.  I thought I had let it go, but when she made this suggestion, it felt right.  Even though the supervisor was removed from ongoing cases for breaking laws in another case, even though the direct "investigator" who committed so many crimes against us is no longer in the area or even working for the same organization, we are still haunted, fearful, angry.  Every knock at the door feels like a threat.  It's hard to trust or feel safe.  There is so much pain still beneath the surface, and not all of it loss.

I pray I can find a way to follow this friend's very wise and inspired advice.  I pray I can let that part of my pain go, so I can continue to heal.  I also pray for those who suffer like this, who go through a loss complicated by family, legal, financial, or other considerations.  I know I'm not alone in this.  I know others need my voice, and one day, the Lord will guide me to a way I can use it.

Happy Mother's Day?

Mother's Day reminds me of those I cannot hold.  Mother's Day is supposed to be a day to celebrate motherhood.  But that day can be complicated by so many things.  Some people have lost their mothers, so Mother's Day is a reminder of loss and emptiness.  The same is true for those who have lost a child.  A mom can have 15 children and still have a rough time on Mother's Day because of the one she cannot hold.  That's where I am today.

I love the children I can hold, but I'm feeling the ache of today more than on most such holidays. A really good book I read on the topic is Josie Kilpack's Unsung Lullaby.  It's about a couple who wants nothing so much as to hold one of their own children and yet who face nothing but hardship and pain when it comes to bringing one into this world.  Mother's Day is a hard day for them because of it.  I think a lot of people can identify with that.  

I wish I could call Mother's Day a time of joy, but I can't.  I can still hug my mom, which is great.  And I've brought live children into this world.  I still have two I can hold.  But I have a fleet of angels, Allie and those I never got to hold, whose losses haunt me today.  It does not help that my brother, my best friend all through childhood, died on Mother's Day.  It does not matter when Mother's Day falls.  It will always be, for me, the anniversary of his death and a time of mourning.  

Tomorrow, I will feel nothing but gratitude for my children, my mom, all the many things with which I am blessed.  Tomorrow, I will remind myself that families are forever, and I will hold all of my angel babies and my brother again.  But today, I will feel the loss, allow myself to mourn, and look forward to better days.  

Serial Loss

Miscarriages: 

If I were to get pregnant again, I would be considered extremely high risk.  As I've closed in on forty, pregnancy in the first place has gotten harder and harder.  The fact that I am approaching forty is another risk factor.  And the fact that I have had 14 miscarriages, 13 of them in a row, several of them medically proven, makes me just about highest of all but not quite.  The farthest along I was for any of those was 12 weeks.  Most were six weeks and before.  Some of those, I would take the test and within a few days, I'd start to see blood.  One of those, I had to have a D&C.  That was rough.  Another, I took drugs to pass the baby to avoid another D&C.  I wouldn't recommend that at all.  I lost so much blood, I was seeing black spots and nearly passed out.  Even after several hamburgers and an iron pill, by the time I was rushed to the ER, I was only on the low end of normal.

These miscarriages really had an impact on me.  The worst were those where I made it as far as looking at an ultrasound, only to hear those dreaded words, "There is no heartbeat."  The first time, the one before Alamanda came, about killed me.  I'd never heard such horrible words in my life.  I've since learned there are more painful words like, "The baby isn't breathing" and "We couldn't revive her."  I've heard other more painful words since then as well.  But the sight of ultrasounds has become painful since I haven't seen a single live one for me in over six years.  Some of those miscarriages launched me into some of the deepest, darkest bouts of depression of my life.  I have the deepest empathy for those who have miscarried once.  It's not a pain I would wish on anyone.  

I went through all of the recommended tests for serial loss short of genetic testing with nothing to show for it but medical bills.  No answers and no rainbow baby.  I have stopped trying.  I have prayed about it and felt it's okay to stop trying.  I can cherish the two live children I have and be thankful for them.  I can also look forward to the resurrection to hold all of them, including those I never 

Kell Antibody:   

I said this serial miscarrying makes me almost as high risk as is possible.  There was something I discovered during the pregnancy with Alamanda that I had never heard of before.  My husband is homozygous for something called Kell antigen.  During my second pregnancy, I became sensitized to it and had a Kell antibody waiting for Alamanda as she grew inside of me.  

When I started researching Kell, I couldn't find much in the way of useful information, only support boards full of traumas and horror stories or doctors' words that didn't make sense to me.  I did see a study that followed six women with Kell who got pregnant with six babies, and all six babies died before the advent of high-tech modern ultrasounds.  For those who haven't heard of it--and there were many when I dealt with it, including nurses--it's a lot like RH factor where the mom's immune system sees the baby as the enemy, as a disease.  The mom's body attacks the baby, leaving the baby anemic.  If the situation is not caught, the baby could end up dead.  And the truly scary thing about this is that one day, the baby could be fine.  Two days later, the baby could die of anemia.  

There are preventative shots to be taken for RH.  No such luck for Kell.  All that can be done, or all that could have been done six years ago, was careful monitoring via elaborate ultrasounds, several per visit, to make sure the blood flows freely through the baby's brain.  The good news is Kell does not impact the baby until after about the sixteenth or seventeenth week.  Now, this is information that I was told three years ago when I was looking at it as a possible cause for my serial miscarriages.  I was told it could not be the cause because the losses were too early.  

Another bit of good news about this is that only 8% of the human population has Kell, and of those, all but 2% are heterozygous, meaning every pregnancy has only a 50% chance of being affected by the Kell antibody.  Here was the nasty part for us: we won the genetic lottery.  We were of the 2% who were homozygous.  We should have had all sorts of problems with anemic babies after the first.  My second child should have been affected by Kell since I should have been sensitized with the first pregnancy, but she wasn't.  Kell wasn't even in our sites until baby three.  The bad news is the only two options for a baby made anemic by Kell are both dangerous: transfusion or induction.  Induction isn't so bad if the baby is fairly far along but very high risk for an early baby.  

                                                 (Painting: "Security" by David Bowman)

Hope: 

And here's the hope for mommies and daddies struggling with Kell: it didn't affect Alamanda's pregnancy at all.  I was there at the specialist's office every week and a half from week 18.  Each visit, we expected problems.  I worried nonstop about stillbirth.  But Alamanda was protected.  Even the specialist turned to me, mystified, and asked how is this baby not affected?  I can only say she was preserved.  She was induced to spare her more danger, tiny but perfect at 37 weeks.  We lost her four months later in an accident.  But those four months were a true blessing, and I'm thankful for them.  

Like I said, this information may be dated.  It is not intended to replace a doctor's advice or words.  I just thought I'd throw this out there into cyberspace for those who struggle with serial miscarriages and Kell.  You are not alone and there is hope.  The most important hope and protection for those struggling with the Kell antibody, other than a doctor's help, is faith.  I pray for those facing issues of either Kell or serial miscarriage.  But one has to understand faith and prayer in God don't always work like we'd like them to work.  I've been praying to have a live baby for years and have finally had to find peace and gratitude for the family I have.  Sometimes, we have to submit to the Lord's plan for us.  It's called "but if not" faith.  I would love to have a baby, but if not, I will still believe and obey.  And it can be hard.  Feel free to contact me if you'd like a listening ear.