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Year 11

by | Nov 30, 2010 | Cancer and Neoplasia, Coma, Grief, Help For Grief And Grieving, Hospice, Loss, Parent Loss | 3 comments

t was 11 years ago today.

I sat in the middle bedroom at my Granny’s house holding his hand. His breathing was shallow and staggered. He had faded in and out of consciousness several times that evening and we had taken turns sitting with him. We knew he wasn’t in any pain and we weren’t exactly sure he even knew we were there. But we like to think he did. After a very long day and evening, and a day or two prior of much of the same, we knew the time was near.

It was decided by one of us, who exactly I can’t remember and it really doesn’t matter, that maybe we should all go in and tell him it was okay to go. We knew he was ready and it was okay. No matter how many times I say it was okay, it really wasn’t. And still isn’t. Just don’t tell my Dad that.

They tell you that people in a coma or not in a real state of consciousness can still hear you if you talk to them. I know now they are right. Either that, or God heard us and passed the message on to Dad.

It wasn’t more than a few minutes after that, although it seemed like much more, he slipped away. Hearing from us that we were okay and it was time allowed him to let go as well. It was very peaceful. It was heartbreakingly sad. It was something I would never wish on anyone else and at the same time a memory I would EVER want to trade away.

It was 11 years ago today and it still feels like yesterday.

It was 11 years ago and I still miss him terribly.

I love you, Dad.

Three Weeks

by | Nov 29, 2010 | Dementia, Grandparent Loss, Grief, Help For Grief And Grieving, Hospice, Parkinson's Disease | 8 comments

3 weeks ago my grandma fell and broke her neck.

3 weeks ago she was rushed to Peoria to see if they could fix her.

At 82 with severe Parkinson’s Disease, degenerative bone disease, (from which she’d lost a whole 12 inches off her height) dementia, and multiple other health problems, we didn’t know what the options were.

The surgeon suggested surgery to repair the fracture. He was hopeful that it would work. Do nothing and she could become a paraplegic if she so much as coughed too hard. Or she could live with the neck brace, which she hated, her lungs could fill up with fluid and she could develop pneumonia. In such poor health, that’s not good.

We opted for surgery; really the only option. Grandma was scared but we all told her we loved her. I told her we would go dancing after she was done as she hasn’t walked in over two years.

She smiled and held our hands, said she loved us and off she went.

Surgery went well and they were able to fix the break. That was not the major hurdle though. Even in good health, Grandma has never done well with anesthesia. Two days before her fall, the dentist didn’t even want to give her a local to fix a couple teeth as she’s allergic to Novocaine.

After surgery, she was put into a regular room and about an hour later, her vitals crashed.

She was gasping for breath. She looked so very scared. She gripped my hand as a wonderful nurse held the oxygen mask on her for close to an hour until they were able to get a bed ready in the Surgical ICU. Once she was settled in the ICU, we each took turns going to see Grandma. She was on a ventilator to help her breathe and give the swelling a chance to go down after surgery. This was against her wishes and she was miserable. She had the vent in for 3 days until it was removed. She did so well.

They observed her for a day in the Surgical ICU (SICU), then transferred her down to another room for a few days.

When she was ready, she was discharged.They didn’t send her back to her assisted living apartment, but to a skilled nursing facility with hospice. Everyone came to visit. Friends, grandchildren, family, everyone. Someone was by her side 24/7. She would talk a little, barely a whisper. Grandma looked at pictures and had us to sing to her while we sat by her side. She told us that she saw my grandpa who passed away in 1978.

She told us all of the beautiful things she was seeing and hearing. It was amazing to listen to her. She told us so many stories. She told us there would be no more pain there and no more wheelchairs. We all laughed and cried and held her hand.

On Tuesday November 16, Grandma took her last breath while my mom sang to her. My mom said it was very peaceful. Grandma wasn’t afraid like she had been in the hospital. I am so very thankful for that. I miss her, maybe more than I can ever express.  My kids miss her too.  They are hurting.  I have given them songs that help them feel better, or so they say.  I don’t know where to go from here. I don’t know how to fix their hurt, or mine.

This holiday is especially going to be hard for me.

Last year I was upset because I wouldn’t get to spend it at Grandma’s house. At least I got to spend it with her.

Now I don’t even have that.

Happy Birthday To My Type One Diabetic Dad

by | Nov 27, 2010 | Dementia, Diabetes, Juvenile Diabetes, Myocardial Infarction (Heart Attack), Stroke, Transient Ischemic Attack (TIA) | 11 comments

Today is my dad’s 64th birthday and it’s a miracle he’s here to celebrate it. He’s a Type I Diabetic and has been since he was four years old.

Growing up, I thought diabetes was no big deal, my dad seemed like a regular guy.  He water skied, ate chocolate cake and drank Coors Light. If he ate or drank too much, he just had a little extra insulin. It seemed simple and without consequence. The only “drama” was that he almost went blind when I was a baby, but several rounds of laser treatments fixed that. I thought my dad was invincible, which was perfect, because he was my world.

Fast-forward to my senior year in college. I was on a bike ride with my fiance in Southern California, when I got the call that my dad had suffered a heart attack and was in a hospital in Northern California. I pause here to wipe away the tears because  even eleven years later, the panic of that memory still grips me. What?  A heart attack? My dad is invincible.  I peddled hard and fast to get my ass home, packed a bag and drove like a bat out of hell to get to my dad.  (Pausing for more tears.)

As I raced across the parking lot, I heard my dad’s voice yelling my name. I looked up to see him hanging his head out the window, waving at me. Okay, he’s still invincible.

My stepmother had driven him to a Kaiser hospital (where we are not members) rather than have an ambulance take him to his hospital. I spent the next several days getting him transferred.

Once in his hospital, he had to have a simple angiogram.

After the procedure, the doctor explained that being a Type I Diabetic had shot his vascular system (a statement I would come to hear many times) and that from here on out things would get dicey. The irony is I didn’t believe him, he didn’t know MY dad, he didn’t believe that my dad was a superhero.

What happened next should have opened my eyes. There was some complication from the angiogram and something went wrong, very wrong. He didn’t look right, he was acting funny. I asked my grandmother to take my younger brothers down the hall to get a soda. I screamed for a nurse. They ran in and assessed him, I stared at the Code Blue button on the wall, I knew it was going to be hit.

It was.

The next thing I knew, the room filled with people and a crash cart as we -the family -were ushered out.  I stood in the hallway praying, shaking, crying. My brothers, thankfully, had no idea, my husband (fiance at the time) heard the Code Blue call and didn’t imagine that it could be MY dad.  hey stabilized him, put in a stint and he was sent home. Then the deterioration began.

Fast forward four years of minor emergencies, medication and doctor’s appointments. I got another one of those calls that makes your blood run cold. Dad had another heart attack and it was major. He needed triple bypass and fast – “the Type I Diabetes had thoroughly shot his vascular system.”

They were transferring him by ambulance to the hospital to perform surgery the next morning. This time, we were three hours away from him  My aunt and I took off, driving through the night to make sure we were there to see him before they put him under for surgery. I wanted to donate blood but there simply wasn’t time. I wanted something, anything besides wait. I was a wreck.

He made it through surgery and we were allowed to see him when it was over. He unconscious and still on life-support. I have never seen so many tubes and machines.  The equipment that surrounded him, dwarfed my larger-than-life dad.

The next five weeks were tough. When I ran out of sick time at work, I drove up every weekend, sleeping on his bedroom floor, giving my step-mother a break, listening to make sure he was breathing. (I don’t think it was medically necessary, but it was emotionally necessary for me).

On one of these visits, I was upstairs when I heard my stepmother screaming. I ran down the stairs, my dad looked catatonic, she had a phone in her hand that she handed to me as 911 picked up.  (Pausing for more tears.)

I explained to the emergency operator that we needed an ambulance, it looked like a seizure, but I wasn’t sure.  Of course I wasn’t fucking sure, I was just a terrified girl who didn’t want to lose her father.  It was the middle of the night, I said no sirens, I didn’t want my little brothers (who were 6 and 11) woken up to more scary sights.

By the time the paramedics and firemen arrived, my dad had come back.  They determined it was a vasovagel reaction from the pain.  But they wanted to take him back in, just to be sure.  I rode in the front seat of the ambulance because I am protective like that.  He recovered from the surgery, but he dropped out of cardiac rehab because apparently, he still thought he was invincible.

As years passed, he did deteriorate as predicted.  He has suffered multiple TIA’s.  He has no long-term and very little short-term memory.  He is bound to a walker.  He can never remember the names of my kids or my husband. He can’t be left alone for long periods of time.

Diabetes has caught up but it hasn’t won… yet, sort of.

My dad is still alive today to celebrate his 64th birthday, but the man I knew is gone. Every visit with him is hard for me.  I used to talk to him multiple times per day.  Now I have to remind myself to call him every couple of weeks. It should be more frequent.

I still panic if the phone rings too early or too late, but in some ways, I don’t have much left to lose.  I talk to him to make him happy, but it pains me to see him confined to his wrecked body.  I struggle with guilt every day because I should call more, visit more, do more.  But I feel empty and I know that is not right.

Sure, there are extenuating circumstances – my stepmother and I have always had a strained relationship. She wanted me there to help with my dad’s recovery, but she doesn’t want me there for family vacations and birthday parties.

They would put me in charge at hospitals and then berate me when it was over for trying to control things.  I could go on and on.  I could explain that I have a family that needs me with them now.  But in the end, they are just excuses why I don’t go more, do more and watch more as my superhero continue to fade away.

Happy Birthday, Dad.  I love you and I miss you.

But the you I miss is gone.

Finding My Faith

by | Nov 26, 2010 | Anger, Anxiety, Baby Loss, Compassion, Coping With Baby Loss, Faith, Family, Feelings, Forgiveness, Grief, Help For Grief And Grieving, Hope, How To Help A Friend With Infertility, Infertility, Livng Through A Miscarriage, Loss, Medical Mystery Tour, Miscarriage, Pain And Pain Disorders, Rheumatoid Arthritis | 8 comments

*I know that not everyone out there is a Christian and I hope that nobody will take offense to this post. My faith is a very personal thing, but it helps me get through so much. My prayer is that everyone dealing with a life crisis will find something that will bring them peace and hope, whether it’s faith in God, faith in humanity, or faith in herself.

When I wrote about my miscarriages and TTC journey, it was the hardest piece I’d ever written. What I left out, though, was the behind the scenes issues. The emotions that I’m still ashamed of feeling. That probably sounds stupid. I mean, you can’t help how you feel about things so why feel shame? Well, it’s been six years and I still do, so I guess I can’t answer that.

When Jordan and I decided to start trying to get pregnant, we didn’t broadcast it, but we also didn’t hide it when people asked. And people did ask. We’d been married over a year at that point, and apparently that’s the time that everyone from your grandma to the cashier at the grocery store deems you ready to have a child. But when we realized we would need a little help expanding our family, we clamped our mouths shut. Our families and closest friends were the only people who knew what we were going through. But when we got that first positive test, we told everyone! I’ve never been the best at keeping my feelings under wraps and we were thrilled.

A few days before I got that positive test, my sister-in-law gave me the news that her sister-in-law was pregnant. I was pretty discouraged at that time thinking that the round of Clomid I had just finished had not worked. But here was this girl (who I love dearly, BTW) who had become pregnant accidentally. It hardly seemed fair.

But then I found out that the Clomid had actually done its job and all was right with the world again. I could be happy for my sister-in-law sister-in-law-in-law sister-in friend, if a little worried for her. After all, my faith had always dictated that “everything happens for a reason.” But then it all changed.

During the few days that encompassed the fateful ultrasound experience and gut-wrenching D&C, I lost more than my baby. I lost my faith.

I left the hospital a bitter, heartbroken person that I no longer recognized. I was angry at the world. I was angry at God. I didn’t go to church. I didn’t pray. I didn’t even sing; something that has always been my solace. For three months I was in this dark pit. Every time someone who didn’t know would ask about the pregnancy and we had to break the news again, I sank further.

At that time, I worked for an agency that provided low-income housing. It seemed like every other day I encountered another woman who was expecting yet another child that she couldn’t afford. All these women around me were getting pregnant so easily, some while actively trying to prevent it, and having the healthy babies that I wanted so badly. I couldn’t understand why I was being treated so unfairly. I couldn’t bring myself to go to the baby shower for my brother-in-law’s sister. Every time I saw a pregnant woman I would cry.

It kills me to finally admit those things. There are very few people in this world that I’ve told about that dark time. I still feel guilty for being so angry. But if my first miscarriage caused me to lose my faith, my second one brought me back.

My second miscarriage happened on a Saturday morning. I was in the ER for a few hours then sent home. The next day at our church was Youth Sunday. I hadn’t been to church in three months at that point, but Jordan’s best friend, David, was delivering the message that day, so I insisted on being there. Not many people at church had known I was pregnant that time, so we didn’t really have to talk about the loss.

Something happened that Sunday morning, though. The youth members all did a great job with their testimonies, prayers, and music. David delivered a beautiful message. And then the youth sang a song to tie it all together – Here I Am Lord. I had heard the song a hundred times before. I had sung it about half that many times. But that day, I actually listened to it. It suddenly spoke to my heart in a way I had never felt before. Thank God we were sitting in the balcony so the whole congregation didn’t see me burst into tears.

I suddenly was at peace. After being angry for so long, it was an incredible feeling to let go of it. In that moment I knew that, like Abraham and Sarah, we would eventually have a child. And that there was a reason for my losses. I knew that it was going to fall to me at some point to support others going through it.

I was able to do just that several months later when my best friend had her first miscarriage. I’ve reached out to others as well – old high school friends on Facebook, a friend at church, etc. It’s what I hope to accomplish by contributing to this site. It also sort of paved the way for me to do the same thing as soon as I was diagnosed with Rheumatoid Arthritis in 2008. Since then I’ve found myself in something of an online support network of people living with chronic illness. Without that moment of clarity, I’m convinced I would still be that bitter person. I’m sure that the RA diagnosis would have been much worse than it was, emotionally speaking. I honestly don’t know how I would have made it through either of my full-term pregnancies, much less through a certainty of life-long pain, had I not had that renewal of faith.

I didn’t tell anyone about what happened to me that day until a few months ago when Jordan and I had the privilege to see David ordained. I figured that was probably the right time to tell him about the impact he had on me that Sunday so long ago. Today, my relationship with God is the most important thing to me. Through Him, I can do anything. There are days when I just need a nudge and there are days when I’m forced to ask Him to carry me. And I’ve come to realize that everything truly does happen for a reason, even if that reason isn’t revealed during this earthly life. But the choices we make when facing hardship will usually go a long way to reaching that revelation.

“But those who trust in the Lord will find new strength. They will soar high on wings like eagles. They will run and not grow weary. They will walk and not faint.” ~ Isaiah 40:31

[Thankful]

by | Nov 24, 2010 | Encephalocele, Happiness, Love, Neural Tube Defects | 0 comments

Embryonically, I had the idea for Band Back Together after my daughter, Amelia, was born and landed in the NICU with an extremely rare neural tube defect called an encephalocele. I’d run multiple-user blogs before; in fact, my first blog was a group project. But the idea of creating a space like this was daunting.

First, I had to figure out what the hell this space was supposed to be. My initial thought was to make it a place for special needs parents. Then I figured that I should add my baby loss and infertile friends into the mix. Then I realized that I was thinking too narrowly. I’ve never limited what I do on my own blog (I don’t, I want you to know, think of this as my own blog. I think of it as yours), so why should I start here?

Band Back Together is a light in the darkness.

Our darkness may not look the same, it may not feel the same, but underneath, we are all the same, and we are all so very good. This space and the community we have created proves it.

I am truly honored to have all of your stories here. I believe in what we’re doing. I believe that each of your stories will touch somebody else who may still be in the dark. I believe that someday, someone will stumble here and find your words, and when they do, they will be moved. They will sit on the other side of the computer monitor, just as you are now, and they will feel the light breaking through the darkness. They will feel hope.

You may not think that what you do is important. You are wrong. You may feel like your story isn’t good; it isn’t enough. You are wrong.

Every word you write connects you to another.

So please, Pranksters, write hard. Help me get our words; our stories to other people. Tell your stories – all of them – and please, help me spread the word about the site. It’s time to take Band Back Together to 11.

December 31, 2009, I wrote this,

So I approach 2010 full of renewed hope for the future, because no matter how full of the darkness I feel, I can feel the light on my face and I know it’s all around me. Soon it will be within me.

I am hopeful.

I have hope.

Happy New Year.

Through you, I have found my light. I was right. It is so, so good.

Thank you for helping me find my light.

A very Happy Thanksgiving to each of you, Pranksters.

My Daughter Is Angry

by | Nov 16, 2010 | Anger, Caregiver, Faith, Family, Fear, Feelings, How To Help A Friend Whose Child Is Seriously Ill, Maple Syrup Urine Disease, Pediatric Caregiver, Pediatric Transplant | 4 comments

My daughter has been waiting over nine months for a liver transplant.

And my daughter is angry.

She’s angry at God. In her eyes, He’s the one who created her with this disease, it’s His fault.

She’s angry with me. I’m her mom. I am the fixer of boo-boos. Yet with this, I am powerless, and that frustrates her.

She’s angry with the transplant coordinator; afraid that she’s completely forgotten about her.

She’s angry with the organ donors who, as terrible as this is, haven’t died yet. She doesn’t completely comprehend that a tragedy has to happen to a family in order to have her transplant. She just knows that a donor has the liver she needs.

I try to soothe her anger, but I’m not very successful.

Maybe because I am, well, not angry, but frustrated too.