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A Letter To A Grieving Parent

[What to say when a friend loses a child is such a mystery. I was the mom at her daughter’s casket in the fall of 2008. So when a friend of mine lost her young son to a progressive fatal disease, I wrote her a letter somewhat like this. When my daughter died, I craved a letter like this.]

Oh my friend. My heart breaks that you find yourself here, where I have walked and wept. Every hour I lift you and your family in prayer, pleading with God to pour out grace and strength and rest over you.

I was so encouraged by the outpouring of support for you and your family at your child’s visitation and funeral. I well remember how exhausting that was, but how much the presence of friends both old and new holds you up in those initial days after. I pray that you drew strength from that love poured from so many who love you and loved your child.

Please consider me a willing listening ear to hear whatever you need to say, or to just sit in silence when the words won’t come. I’ve walked this dark road and would be pleased to walk it again with you, if that would help.

Even now, 21 months later, some of life’s moments still seem surreal. It’s like I step out of life and look at it in disbelief. Can this really be the life I’m living?

The day Ellie died I felt myself split in two. I remember riding in the ambulance with her and yet looking at the scene and thinking, “Is this really IT? Look at the way they are working on her. I think she is gone. Is this really happening? Is this really the way it’s going to end?”

And that numb detached feeling persisted through the funeral planning, the visitation, and the services. Whenever I’d step back into my life, I was saturated with sadness. I remember thinking that I had to figure out how to stop crying because it hurt too bad. My sinuses and eyes were swollen, throbbing, aching. Grief is a physical pain. So I would step back out when it got to be too much.

Ever so slowly, the crying slowed, though it will never stop completely.

Ever so slowly, I could move through a day a little more.

Grief is exhausting. I had no idea. I needed help with food preparation, clean-up, housework, laundry… for weeks. Every task took everything I had. Things I had done before without a thought took every ounce of concentration so that I didn’t leave water running or the stove on or milk on the counter.

At the same time, all those days I couldn’t figure out what was taking so much time and effort. Without Ellie and her needs, the days gaped empty. Again, another surreal element of that time. Those days finding your way through is so awkward. You feel the yawning emptiness in your family: Folding laundry and folding your child’s things for the last time, and then having one less pile of clothes. Their empty bed. Their silent equipment. I constantly looked for what I was forgetting, constantly counted heads because I wasn’t confident I could keep track of everyone anymore.

It took at least a month for my energy to return.

If I may offer a bit of advice? Many will say, “If there’s anything I can do…” Take them up on it. Mention the lawn that needs to be mowed, the dirty dishes, the vacuuming, the leaf-raking, the snow-shoveling, watching the kids so you can sleep, writing thank-you notes (I personally think that a grieving parent should never be expected to send thank-you notes.), doing laundry. It will give you rest and they will love to be of some small help to you.

And in the midst of crying your own tears and asking your own questions, your other children have fears and questions. They are worried for their parents. They make valiant efforts to understand death and funerals and where their brother or sister is versus where their body is.

I write in hope that knowing others have walked through this gives you hope. I hope that you can feel my arm around you as I weep with you.

Love and prayers,
Joy

PTSD And My Sinking Ship

As women, we have to learn to listen to our gut. {Even when it’s telling us something we don’t want to hear.} And in March 2010 my gut was telling me one thing – loud & clear – “You must turn this ship around or it’s going to sink!”

I know, right? Clearly, something I didn’t want to hear.

You see, my son was nearly killed in an accident in July 2009 and eight months later, the bones were healing, but I was still broken.  And, something had to give.  I was bending and bowing under the heavy load I was carrying & I had to make a choice. The first choice that would turn my life, this ship, around was telling my husband the truth. I had to tell him of the awful thoughts that would fill my soul and haunt my nights.

I had to tell the man I love how often I had pictured him dead or dying, with our beautiful, innocent, children at his side. I had to tell him of the times I lied and told him I was sleeping downstairs, when really? I was sitting in one of the kids rooms crying. Picturing them dead. There is no marriage course that prepares you for that conversation. No book that tells you what to say when you’re wife is losing her mind.

I am blessed. And he reinforced what my heart knew and my mind couldn’t comprehend when he hugged me and held me and told me that I needed to call a doctor. {I knew in my gut that this was what I needed, but it was nice to hear him say it.}

You see, I was dying a slow death at the hand of post traumatic stress disorder. At the time I didn’t know what it was, but I knew that anxiety and fear were ruling my life. I was not living with intent.

Post Traumatic Stress had taken over & changed the woman I had once loved. It had stolen my husband’s wife & my children’s mother. I am a firm believer that life shouldn’t be the same after trauma, I expect that. I accept that. But, I also knew that I was not living and I didn’t want to settle for anything less. When you believe in your heart that one of your children is dying, is going to die, may die…there are no books or blogs or words or friendships that are inspiring enough to settle your soul.

And, even after I tucked my boy away in a bed, EIGHT long months later…safely upstairs, without a wheelchair, after a long day of school and baseball practice, I couldn’t shake my spirit of those haunting thoughts. Those reoccurring nightmares, I had when I was awake.

Nighttime would creep up on me like a thief and steal any sanity I had managed to build up in my reserves for the day. It was always worse at night.

The blackness would slip under the door frame and suddenly I would grow weak under the urge to hold my children tightly and scream into the thick air. The thoughts that filled my head were not that of a “sane” woman. I no longer recognized the woman that replaced me when night fell. The fear of losing my loved ones began to grow…and grow…and grow…

I didn’t tell the therapist everything right away. But after a week of visits, I let it all go. I told him that I pictured my baby dying of SIDS every time I closed my eyes. I would sit in her room in the dark on the floor and use my phone to light up her face so I could watch her breathe. I would rock in her room through the night and cry. And torture myself with the thought of finding her lifeless in the morning. A thought that wouldn’t let me close my eyes.

The blanket the boy brought home from the hospital would trigger phantom day-dreams that would leave me shuttering. I could hear him screaming in the night, in pain, even after the pain was gone. I would lay awake at night and watch my husbands’ chest rise and fall with each breath. I would picture how badly my heart would/will hurt when he dies, I would think of losing my parents…losing my aunts. Death consumed my thoughts.

I couldn’t drive in my car without sobbing uncontrollably. Every slammed brake or rushed traffic light would leave me in a puddle of doubt and fear. I was convinced someone was going to hit me, hit us, kill my family…

And, I knew this wasn’t right.

There were times when my mind would convince my heart that I was better off dead, rather than face the sadness the future holds. I would pray to please let me die before my children, my husband…and at times, I would even think “before my parents.” I would remember the agonizing pain of the unknown – as my son was air-cared to the local Children’s Hospital – and I would pray that the demon of memory be taken away from me.

But, as I told my therapist of my thoughts & fears…as I spoke of the anxiety that chased me in the night…the fear seemed to find a place where it could lay dormant. And I was fine with that. For now.

It’s been just over one year since the accident. And I still know that the dormant monster is waiting. Lurking…

And, there are times when I have talk myself off the ledge. Times when I feel the anxiety creeping back in. I accept the fact that life will never be the same. I accept the fact that it’s not suppose to. And, I know that with that change comes baggage, that at times will be too much to carry. But I also know I can face this demon head on, with the help of my family & friends…and even my blogging community.

I am working hard to turn this ship around. To make up for the ground that has been lost. To find my way back to the shore of safety and maybe, just maybe, even learn how to live on the sandy, white beaches of satisfaction.

Someday.

The Blame Game

Your baby got sick. Your baby has lasting health problems. Your baby died. What’s next? Who do I blame? Surely somebody is to blame, right?

Not always. *

Our son Charlie died from late-onset Group B Strep in June of 2003. He was 24 days old. The doctors said there was a 50/50 chance that he got it from labor (me) or that he just got it from “life”. So my husband and I made the conscious choice to not dwell on or even think about who or what was to blame.

That’s crazy, you say. We could sue somebody and get lots of money if they were found to be at fault.

OR

On the other hand, I could blame myself daily and end up sinking into an even deeper depression and spending the rest of my life beating myself up for carrying GBS and killing my child.

No amount of money would bring my baby back. If there were a specific amount, I would beg, borrow, steal, cheat and maybe even kill to get enough money to bring him back. I would sue whomever and whatever I could if they would bring me back my sweet, pink, smell-goody, bright-eyed Charlie.

But that isn’t going to happen. Ever. So I have made peace with the fact that no negligence was done, by myself or my husband or any medical staff, and have told that part of my grief to take a hike. I’m not thinking about it anymore.

*Exception: If there was gross negligence on the part of a caregiver, doctor or hospital, and you have the resources and truly believe you have a case, then going after compensation may be okay. I’m not attorney, but I do know it won’t bring your child back or make your child whole again.

The Funeral

A year ago a limousine sent by Mike’s company showed up in front of our house to take us to our daughter’s funeral.

I climbed in the back, carefully smoothing my purple dress so it wouldn’t get wrinkled, and then realizing how ridiculous that was. I stared out the window and thought, “I can’t wait to take Maddie in a limo!” And then I remembered.

I wore a set of gold bracelets that she loved to play with, even though they clanged and made lots of noise. In the pocket of my dress I had the first hat she ever wore from the day she was born.

We arrived at the church early, and looked at how the pictures and Madeline’s things had been arranged.

Maddieshrine Three

La-Z-Moozer

Maddie's Piano

We then sat in a room in the back while we waited for everyone to arrive. We walked out right before the service started. I stared at my feet as we walked to our seats in the front row.

I looked up when I heard chuckling, and I realized the laughter was at a funny picture of Maddie from the pre-service slide show.

The service started, and I listened to the celebrant, then my dad, Mike’s dad, my brother, and Mike. As it came closer to my turn to speak, I started to feel sick to my stomach. My body felt cold and my legs felt like jell-o. I clutched her Abby doll close and walked up to the podium.

Abby

Podium

I looked out at the crowd and was amazed by all the people.

Front Chapel Wide

four purple ribbons

Somehow I managed to address the crowd.

After the service there was a beautiful balloon release. The wind blew right when the balloons lifted into the air.

Gathering for Balloon Release

maddie's purple balloons.

As my balloon floated away, I wished that it could take me with it.

The reception after was a blur. So many people came, people I hadn’t seen in years, wonderful people. I didn’t eat, the food smelled both delicious and awful. There were a lot of hugs and tears. I didn’t cry. I couldn’t.

Many people told me how beautiful the reception was, and I wanted to say, “well, we don’t get to throw her a second birthday, or a sweet sixteen party, or a graduation, or a wedding. This is it.” Instead I said thank you, and gave credit to my wonderful friends that had handled everything.

We stayed until the sun was down, the cold wind blowing steadily. We stayed until the last person left, and then we got back in that limo and returned to our empty, quiet home.

all photos by the wonderful Casey

Solitary

I’m turning into a hermit. Not in the traditional sense, exactly. I leave my house almost every day. But I hate leaving. When I leave, I can’t wait to get back. I can’t wait to put on the same clothes I’ve worn for twelve weeks, even though they stink and have stains on them. I long to lay on my couch and stare blankly at the TV.

I’m not finding comfort in anything anymore. Flipping around on the internet, my surefire way to escape, now makes me tired. I have thousands of unopened emails, dozens of unread text messages. I want to look at them but I just don’t have the stamina.

The only things I seem to have energy for? Envy and crying.

When I was on bed rest with Madeline, the only time I was allowed to leave my house was to go to the doctor. I remember sitting in my OB’s office, seeing happy pregnant ladies with their growing bellies, and being overcome with jealousy. Or when Maddie was in the NICU, I would constantly see happy parents going home with their new babies, and my body would become hot with anger.

This is so much worse.

Everything sets me off now. Seeing a child walking down the street with a parent, or a man buying diapers, or a plastic toy in the grass turns me into an ugly, hateful shell of my former self. I say that I wouldn’t wish this on anyone, but that’s not entirely true. If it meant I could have my little girl back? If a magical genie said, “OK, pick another family and they’ll lose their child instead,” there isn’t a single person in the world that would be safe. Even the people I know.

I felt guilty about this at first, but I realized that everyone who knows me or reads this would feel the same way. And everyone who knows me or reads this has already had a similar thought. “Man, that sucks, but better them than us.” Who WOULDN’T think that way? I know that, before Maddie passed, when I heard about a family that lost a child I would be so relieved it wasn’t MY baby that was gone. It wasn’t MY family whose worst nightmare came true.

So I’m slowly becoming a hermit, because I’m afraid soon I won’t be able to keep it in. So that the next person that says something well-intentioned won’t get me screaming in their face. So that the next person who rightfully complains online about their cranky child won’t get an expletive-filled email or comment. So that the innocent man buying diapers won’t have to see me glaring at him with my swollen blood-shot eyes.

Am I protecting others, or myself? I don’t really know.

Falling

again. my spirit, that is.

its one of those days where i have to consciously push against the gravitational pull of grief.

it has been a week since T left. it has been almost ten months since i was pregnant with my babies

by accident i typed ‘ten weeks,’ realized that it has been so much longer than that and just crumbled.

where did all the time go?

i have never been prepared to not realize my goals or get where i want to be in life. i am intelligent and capable. i am kind and helpful. i go over and above in almost every exchange and interaction.

but none of that means anything, and failure could be here to stay.

i feel very alone, and not because T isn’t here, i have felt this way even while in his arms.

i’m not the person i thought i would grow up to be and i’m not sure how to live as the substitution