Grief Journal: Faith

24) Has your faith changed?

Right after my son passed I away, I was really confused. I struggled with my faith. I questioned everything. As I worked through my grief my faith became stronger. Because God sent his only son to die on the cross for us, I will be reunited with my son in heaven. If God loved us that much, then there is no way he would just take my son from me and cause me so much pain.

Now life is about trying to stay on the path that God wants me on and surviving every day that comes my way until I reunite with my son in heaven. I will miss him every second of every day, but I still have a life to live and God's plan to follow. Having faith doesn't make this an easy journey but it reminds me that I'm not alone. It reminds that even though it's hard right now, it won't always be that way.


Click here for the entire list of Journal prompts.

Grief Journal: The Only One

23) What do you do when you feel like you're the only one grieving?

More often than not, I feel like I am the only one grieving the loss of my son Liam. I also know for a fact that I am the ONLY one grieving the loss of the twins my first pregnancy. A lot of people just sweep the fact that you miscarried under the rug like it's something you should be ashamed of. Something your not allowed to talk about. A lot of people believe that it wasn't even a life when you miscarry in the early stages. I think about my twins all the time like I think of Liam. What would they look like?, how hard would it have been to care for two babies at the same time and so on.

For my 3 babies in heaven (Liam and the twins), I have this handle holder thats 3 kids holding hands as if to be playing ring around the rosie, around a candle. I've imagined the 3 of them in heaven doing so so many times. For Liam I have his urn, shelf set up and a candle with his picture on it.

But when I feel alone in my grief, I keep to myself. I write in a journal or blog. I look through his pictures and videos. I cry a lot. I even buy little things when I find them that remind me of him for his shelf.

There's no exact science to what I do when I feel alone. I've also been known to reach out to those that loved him just to try to not feel alone. And when all else fails, I do something for myself. I buy a new Rae Dunn piece, or letter board. I treat myself to something sugary even though it'll make me sick. I color and draw. And my favorite is cuddling with my cat.

Click here for the entire list of journal prompts.

Grief Journal: Common Quotes

22) Pick a common well-meaning quote someone has said to you. Do you believe that it's true? Why or why not?

"At least you can have another child"

JUST NO! There is so much wrong with this saying. Yea the person saying means well. They're not out to crush  your heart (at least I hope not) but it still does. For me I actually can't have anymore children. I had my tubes tied when I had Liam and suffered a uterine rupture while pregnant with him. To get pregnant again it would be high risk to that baby and to me. Also what are you thinking when you say this? Surely your not thinking having another baby would replace the child I lost right? Because that's impossible. Even if I had another baby, Liam would still be gone and I'd still miss him and my heart would still be missing a piece. There is NO getting over the loss of your child. There is only learning to live each day without them until you see them again in Heaven.

I know from first hand experience that having another child after losing one does not take the place of the one you lost. My first pregnancy I was pregnant with twins. I didn't even know I was pregnant until I miscarried one of them one night after a long walk. I immediately got in to see a doctor to find that I was still pregnant with the remaining baby. They said it happens. I cried my eyes out. Yes I was finally  going to get to be a mom, but one of my babies would always be gone. 3 weeks later I miscarried the second twin. There was no reason for it, it just happened. 2 months later I became pregnant with my daughter Lanie and delivered a happy healthy baby girl. Shes 10 1/2 now. The twins would be 11 years old now. 12 in November/December.

Lanie has been such a great kid. I miss those late night bottle feeds as I rocked her and sung her back to sleep but she never took the place of the babies I lost because she was her own self. As a mom who has lost children, I always think of them. Holidays and special occasions are the worst because I know I should be wrangling up 4 kiddos and not just the 1. I am a mom of four. No other child can take the place of the ones I lost.

Click Here for the entire list of journal prompts.

Grief Journal: What Have Your Learnt?

19) What have you learnt about yourself through the loss of your child?

Close your eyes and envision your babies. Feel the love you have for them overfill your soul. Now imagine losing one. Having to bury one. Imagine the pain, the heartbreak, even your soul shattering. Now know that the actual pain of losing a child is 10 thousand times worse than that. They say that you can actually die of broken heart syndrome, something that happens when you loose a loved one.

I learnt that you can live and breathe despite the pain of losing your child. It's difficult to say the least but it is possible. I learnt that you can still have a life. No it's not the life you imagined with your baby, but you can still live and even be happy. 


Click Here for the entire list of journal prompts.

Grief Journal: Word Cloud

18) Create a word cloud, print it or paste it in your paper journal or on your blog. You can use Wordle or Tagxedo.

I used wordclouds.com

 

 

Click Here for the entire list of Journal Prompts

Grief Journal: Acrostic Poem

16) Write an acrostic poem using your child's name.

Loving 

Imaginative 

Amazing

Miracle

Click here for the entire list of journal prompts.

Grief Journal: Letter to Liam

15) Write a letter to your child...


Dear Liam,
I miss your smile. I miss your laugh. I miss our cuddles and watching crazy animal videos with you. I miss reading "I love you Stinky Face" to you every night and "arguing" about which one of us is stinky face.

I miss how you use to climb on the back of the couch and lay there like the cats. How  you use to hang upside down from it and laugh. I miss how you use to stick your feet in my face and tell me to smell them and then laugh when I said your feet were stinky even when they weren't.

I miss singing the night night song to you. Lanie hasn't let me sing it to her since you passed. I miss watching you and Lanie play and laugh. She misses you too. It hurts her so much. Everyone misses you.

I will always love you. I can't stop. I don't want to stop. It's been 2 years sweet boy. 2 Years since I held you. 2 years and I haven't stopped grieving. I haven't come to terms with your passing. Maybe it's because I feel guilty like I shouldn't stop. But I need to find a better way to balance this grief and this life because I have to continue living.

When my time goes and I get to Heaven, I hope that you'll be waiting at the gates for me. I hope that you won't be mad I chose to see this life to the end and try to make a small difference in this world. I love you sweet boy and I will always love you. If I could change things, I would. I would have you here with me in an instant if it were possible but I have to come to terms that your gone. The only hope I have is that I will see you again. I love you sweet boy, always and forever.

3> mommy

(taken and edited October 2011)

Grief Journal: Secondary Losses

10) What are some secondary losses to the loss of your child?

When we lost Liam we lost an entire future. Christmases, Birthdays, watching him grow. We don't get to watch him graduate high school or college. We don't get to see him fall in love and get married. We don't get to spoil his children because he doesn't get to have any.

 I lost being a stay at home mom. I loved being able to spend all my time with my kids. Yes Liam's medical issues were extremely time consuming and mentally exhausting, but it was worth it. He was worth it. He was my reason and when we passed away I lost myself. Two years later and I'm still trying to figure out who I am. Now days I'm just trying to keep busy, keep my mind occupied so I don't go crazy.

Even then I question my own sanity. I feel as if I'm losing it. I remember him running through the house laughing and using my couch as a slide. Just today I was cleaning out the cabinet above the oven and found the very baby bottle I filled with water for him the day I rushed him to Urgent Care to try to get fluids in him. The day he passed away. I was immediately engulfed in a flash back. I was right back there. It feels like it just happened. So not only do I feel like I'm losing my sanity but like I'm losing my future. I don't know what I want out of life anymore or what I want to do with it. I feel stuck. I'm a mom with no baby to hold in her arms.

When I was pregnant with Liam I suffered a uterine rupture. Because of this it's too dangerous for me to be pregnant again. Because I lost my baby, and I'm a mom without a baby now, I'm now mourning the inability to have another. If I could turn back time I would find a way to save my son. If I could turn back time I would change my decision to have my tubes tied. I can't so I'm just stuck.



Click here for the entire list of journal prompts.

Grief Journal: The Things I'd Like To Say

8) If I Could Tell My Child Something I Would Say...

You were perfect.

I love you more than I have or will love anyone.

I needed you more than I needed air.

I miss you more anyone could possibly miss someone.

I wish you were here.

I miss our lunch dates.

I miss listening to you talk.

Your smiles and your laughter kept me going.

Every second with you was worth it.

I'd do it all over again to have you.

If I could have saved you,

I would have.

Click here for the entire list of journal prompts.

Time

Whoever said "time heals all wounds" never lost a child. Time cannot heal all wounds, but God can.

We're coming up on Liam's second angelversary and third Christmas without him. If I were to tell you that two years after loss that all will be fine, it would be a lie and I won't lie to you. To be truthful, it gets worse. That may seem daunting to you if your just starting this journey of life after the loss of a child but keep reading. 

It's the holidays without him that are the worst. I'm not sure if it's worse for us because the holidays and his angelversary are compounded on top of each other. I believe that it must be because we survive Valentines Day, Easter, and 4th of July with more "grace". The first Christmas without our Liam there were no smiles, no laughter and no enjoyment. If we hadn't of already decorated when he passed then we wouldn't have.

The second Christmas without him the numbness wore off and it was like a knife being driven into our hearts.There were fake smiles when we could muster them. Everything was a blur and we were like robots just doing things we normally did because that's what was expected of us.

This year, our third Christmas without Liam, I'm prepared. I threw up the tree as soon as I felt the depression setting in. We knocked out our Christmas shopping knowing that I would be basically useless the closer it got to Liam's angelversary. They're even mostly wrapped. The only thing we haven't been able to do is muster the energy to put up the outside lights. We're so sad this year that we even skipped the Christmas parade. We have moments when we cry. Moments when we laugh. Moments when we're just there. Moments when we're fully engaged in life. It's this constant ache in your heart that never goes away. A pain you can live with but always hurts. 

There are moments it feels like the air is sucked out of the room. Moments when the pain is so great you think surely your heart will stop at any moment. At our one year mark, I still wasn't sure I would survive the loss of my son. At nearly the two year mark and I know I'll survive it but I still have moments I think my heart will stop. We went from not being able to even see a future to now planning for the future again. It may only be a few months ahead but it's a start. There's hope because we believe God will heal our broken hearts.

I believe that you need a reason to keep living after the loss of a child. Sometimes that pain is so great that the fact that you have another isn't enough reason to want to live. Losing Liam broke me into so many pieces that I couldn't put myself back together again. Daily, hourly, I prayed to either die or be healed. When Liam was born sick, I thought I had found my reason for life. Taking care of him so that he could do something amazing and change the world. My reason for living was ripped from me when he passed but God gave me another reason. Another path. Using my own pain and story to help others through their loss. I share my personal journey here with you in hopes that it will help someone out there. 

I also co-founded a non-profit ministry, Sent from Heaven. Together my co-founder Amanda (who had the brilliant idea for SfH) and I spread awareness, put together care packages and share our stories and resources with other families going through this journey. Having a purpose, something to throw yourself into is important. At first it's a distraction then it becomes your mission and then one day you wake up and you've changed. Your pain has changed. If it wasn't for SfH, I don't know where I'd be right  now and I don't want to think about it. 

Nearly two years later and nearly every laugh is genuine. I still have bad days, days I don't even want to get out of bed, but it's changing. I have hope  now, where before I had none.

The Lord is close to the brokenhearted and saves those who are crushed in spirit.

Psalm 34:18

Grief Journal: Difficult

7) What do you find difficult that you didn't before you lost your child?


I find it difficult to hear another child have the same name as mine. Every time I hear it my brain automatically thinks of my son. Then there's a slight delay as my brain catches up and pushes through the confusion.

Holidays, birthday's, special occasions are extremely hard. We're coming up on the second angelversary and third Christmas without Liam and this year is harder than the others.

Three years ago today Liam was cuddled on my lap watching the Thanksgiving day parade but scared of the loud noises.

Two years ago today Liam and Lanie were making salt dough ornaments to hang on the tree.

One year ago we were navigating our first thanksgiving without Liam.

Today we are skipping the Christmas parade and feeling depressed. None of us even care if we put lights up outside. None of us feel like celebrating without our little lamb.

This is child loss. This is CDH. This is pulmonary embolism.

Click here for the entire list of journal prompts.

Grief Journal: It's All In The Name

6) How did you choose your child's name?

Choosing Liam's name was harder than I imagined. When I was pregnant with Lanie we had choosen the name Landon if she were to be a boy. I just thought we'd use that name. Liam wasn't a Landon though. It took way longer to come up with his name than it did Lanie's. We were watching a Liam Nesson movie and decided then that our baby boy was a Liam. It was fitting too, to name him after an actor since Lanie was named after a movie character.

Liam is an Irish boys name meaning strong willed warrior. That he was. He came out fighting for his life and never stopped. If it wasn't for that sudden pulmonary embolism then he would still be here with us, fighting. Even though he had a fighters spirit he shouldn't of had to fight for every breathe he took.

His nickname was Little Lamb. When he was a tiny baby during one of our hospital stays, one of the nurses thought she heard me call him Lamb instead of Liam. She thought it was adorable and so did I. It ended up just sticking. Liam was God sent to us. He brought us closer to God. He is one of God's lambs. In his death he has brought me even closer to God, making my faith stronger.

Click here to view the entire list of journal prompts for bereaved parents.

Grief Journal: Surprising

4) What has been surprising during your grief?

When my son passed away, it was soul shattering blow. The entire first year it was like there was veil shrouding the pain. Numb but not completely. I wasn't prepared for the pain  that would hit for the second year without him. The veil had lifted and there was nothing left to cushion the blow of another set of holidays and special moments without my sweet boy.

Now we're approaching the second angelversary of my sweet boy and the 3rd year without him. The depression seems to have set in sooner than it did last year. It feels deeper and darker. I find myself not doing things I would normally do. I've stayed home instead of attending get together's. Even one on ones I've canceled. I don't want to be around anyone. Not even  my family. I seclude myself. The pain keeps getting worse.

The most surprising thing during my grief has been that the pain keeps getting worse. That my heart is still beating despite the amount of pain I'm in. They say that you can die from heartbreak. They also say that time heals all wounds but that's a complete and utter lie. And despite being surrounded by family and friends, I feel all alone.


Click here to view the entire list of journal prompts for bereaved parents.

Grief Journal: Confusion

3) What has been confusing during your grief?

Grief is a "funny" thing. It messes with our hearts and our minds. So much has been confusing to be since the loss of  my son. Like how I've continued to live when my heart hurts so very much.

The most confusing for me though is the chain of events that lead to my sons death.

In November he caught a cold. He was sick yet he was his normal smiling and laughing, energetic little boy. He stayed sick for a few weeks then got better. After only 2 days he began getting sick again. On the Monday before he passed I took him to urgent care for chest xrays knowing how prone he was to pneumonia but because of how happy and energetic he was, the doctor refused.

That night he got worse. The next morning I rushed him back to urgent care, on oxygen. He was extremely exhausted but seemed fine otherwise. Suddenly in the waiting room he turned blue. They transferred him to ER where he later died suddenly of a pulmonary embolism.

Because of his weak immune system his body couldn't fight off the cold and it became a blood infection. That infection created the pulmonary embolism. If his veins hadn't been covered in so much scar tissue they would have been able to save him but years of being poked for IV's and blood draws left it impossible to gain IV access. We had just removed his mediport a year and a half prior to that.

It confuses me how he was so happy and bouncing around then suddenly he was gone. It confuses me how a cold turned into a blood infection. He confuses me that he was here and then gone the next second.


Click here to view the complete list of journal prompts.

Grief Journal: Telling About Your Loss

2) Describe a time you told someone (who didn't already know) about your loss.

The other day I had to see a surgeon. The nurse doing the intake had to ask me a series of questions. Those questions included needing to know how many children I had. That is a hard question for me since the loss of my son.

I explained that I had my 9 year old daughter and that I lost my 4 year old son.

I then braced myself for what was surely to come next. Most people get this look of pitty in their eyes and say how sorry they are for me. It confuses me because they never look truly saddened. It's always pure pitty and I hate pitty.

This girl however didn't react whatsoever. No "I'm sorry", no look of pitty, nothings. In that moment I could have hugged her. She was the very first person not to fake it. She probably didn't care one bit but she was truthful in her actions and I was so very grateful.

There are times where I can't bring myself to tell one more person that I've lost a child. Times when I can't bear to hear one more "I'm sorry" or see one more look of pitty. For instance there's a cashier at Walmart that I've yet to be able to correct when she asks where my babies are. She just assumes they're both at home or school. I haven't found the courage to explain that my son died two years ago this December.

So being confronted with someone who was real was refreshing.


Click here to view the complete list of journal prompts.

Grief Journal: What You Should Know

1) What would you like other people to know or do after someone loses a child?

To be perfectly honest the best thing you can do for someone when they lose a child is be there for them. It may be painful for you but I guarantee it's a trillion times painful for them and if you love them, show up.

You don't have to have the right words. In fact what you feel are the right words could very well be the wrong ones. Just hug them or hold their hand. Place your hand on their shoulder as their sobbing.

Little things will mean so much more than you can possibly imagine. Showing up on their doorstep with coffee or food is absolutely huge. During those first few weeks, everything is a blur. You forget everything, including to eat. If your at their house and you see the dishes need to be washed, just do them. Don't ask because they'll always say no. Do a load of laundry for them if it's piled up. It may seem trivial to you but it's extremely helpful.

Remember that after the funeral, they still need you. Just because they laid their child to rest doesn't mean they laid their pain to rest. They still need you to stop by and text them weeks after. Months after. 

Within a week or two after my sons memorial people stopped showing up or calling. After two months it felt like everyone forgot. At 3 months into this journey, I became so depressed  that I couldn't get out of bed. I didn't call or text anyone. No one bothered to check on me. I laid there without any concept of time. I was so engulfed in pain that I was sure my heart would stop at any second. Truthfully I prayed it would. At 6 months I tried to function but failed miserably. I felt completely alone in my grief. This is why I tell people that their loved ones need them long after the funeral. I had a friend who lost a child stand up and tell all our friends and family this very thing but they failed to follow through. 

The holidays are so hard on someone whose lost a child. They feel it even more because these are times for family. The birthday and day of loss are two big ones as well. Call them. Check on them. Let them know you remembered and your thinking of their angel as well. It means more than you'll ever imagine. 

Click here to view the complete list of journal prompts.

Journal Prompts for Bereaved Parents

As a parents whose lost a child I know how hard it can be to work through that grief and that pain. When my son Liam was born very sick in 2011, I needed an outlet and a way to remember the ups and downs on NICU and the CDH journey. I found writing in a journal or even blogging helped me better than anything else. You can be completely honest in your journal without fear of judgment. Sometimes all I needed was to write down all my fears and worries to work past them. So why would my grief be any different? I decided to start actively working through my grief through journaling and wanted to share these prompts with you. My hope is that they help us all in some way.

To see my answers click the "Click here" after each journal prompt.

1) What would you like  other people to know or do after someone loses a child?    Click here

2) Describe a time you told someone (who didn't already know) about your loss.     Click here

3) What has been confusing during your grief?    Click here

4) What has been surprising during your grief?    Click here

5) What have you been thankful for during your grief?    Click here

6) How did you choose your child's name?    Click here

7) What do you now find difficult to do that you didn't before you lost a child?     Click here

8) If I could tell my child something, I would say...    Click here

9)Some well-meaning but hurtful things people have said or done are...    Click here

10) What are some secondary loses to the loss of your child.    Click here

11) Try writing your child's story in 100 words or less.   Click here

12) What quote or scripture has been meaningful or comforting? Why?   Click here

13) Write a bucket list.  Click here

14) Plan something in honor of your child on a day that means something.  Click here

15) Write a letter to your child. Click here

16) Write an acrostic poem using your child's name.    Click here

17) Make a list of goals for yourself that you hope to accomplish by a year form now or what you would like to be different in a year.  Click here

18) Create a word cloud, print it or paste it in your paper journal or on your blog. You can use Wordle or Tagxedo.  Click here

19) What have you learnt about yourself through the loss of your child? Click here

20) How do you feel different than you did before you lost your child? Click here

21) Have your priorities changed since you lost your child? Click here

22) Pick a common well-meaning quote someone has said to you. Do you believe that it's true? Why or why not?  Click here

23) What do you do when you feel like you're the only one grieving?   Click here

24) Has your faith changed?  Click here

25) What are the ways of grieving you feel society expects of you because you are a man or woman? Do you break these "rules"?

26) Which ways of grieving seem to bring you and your partner closer? Further apart?

27) What is one of your favorite memories from your child's life, even if they only lived in the womb?

28) What would you like your friends and family to do to honor and remember your child?

29) Is there anything that happens or anything you do that makes you feel most connected to your child?

30) What song has been meaningful or comforting? Why?

31) Write a list of words that describe your child.

32) If you could keep only one memory of your child, what would it be?

33) When you're having a particularly hard day, week, etc, what do you wish others would understand?

34) What are the questions people asked that you appreciate them asking?

35) How have your relationships changed since you lost your child?

36) Do you have any new fears or worries since you lost your child?

37) How has your response to grief been different from those closest to you?

38) What emotion has been the most overwhelming through your grief?

39) What unanswered questions, if any do you have?

40) What things are you still able to find joy in?

41) "Grief ambushes" are times when you experience a flood of emotion at an unexpected time. Describe some of the grief ambushes you have experienced.

42) Do you think your grief will ever end? Why.why not?

43) Although the bible shares specific details about heaven, our human understanding is limited. What do you wish you knew about heaven?

44) Identify your own ideas about how you as a man or woman are supposed to "handle" your grief. Are you following these ideas?

45) No one can imagine what it's like to lose a child until they have actually experienced it. Has anything about your grief journey been different than you imagined it would be?

46) Are you doing anything unhealthy in response to grief or are you tempted to?

47) If death is a natural process of life, why do you think so many people act uncomfortable talking about it and various aspects of grief?

48) Identify the physical, emotional, and spiritual needs you have right now.

49) Has anyone said anything that made you feel they were trying to rush you through  your grief?

50) How can you use your grief journey to help others?

51) Is anger about the loss of your child a good or bad thing?

52) How has grief impacted you physically?

53) Name a flower than reminds you of your child.

Stormy Weather

"The Coulds Around the Monster" by Alessandro Patronu

Grief is like the raging, angry waves of the ocean.

During the worst of storms the waves can reach 100 feet high during a tsunami.

When they reach land those waves can cause absolute destruction up to 1,700 feet up slope.

It destroys and it kills.

Grief is no different.

It grabs you and it pulls you under threatening to drown you.

Then it lets you up for air only to pull you under again.

The waves that reach the shore are the damage is does to those around you.

Grief changes everything.

Or really the loss that caused the grief changes everything.

You no longer are you in the eyes of others.

Those that you've known forever start to look at you differently.

Many pull away and one day stop talking to you all together.

The reason is always the same.

They say it's too hard for them to see you,

to watch you go through the loss and the grief.

It hurts them too much.

Every now and then there is a few trees that survive the storm.

A few friends willing to stick around.

Then there are the old scarred trees that you never noticed were there before.

Those are the new friends who've been through this storm before.

They offer strength and wisdom and comfort while the storm rages.

12-15-15 Me holding Liam for the last time shortly after he passed.

The rain came when Liam was born.

If you know me you  know I love rain.

The sound, the smell, even the dark clouds.

It rained off and on for nearly 4 1/2 years.

Then he passed away and the tsunami hit.

It grew and grew until I thought it would take us all out.

It's been a storm for the last 19 months.

The length of time since Liam's been gone.

There are no words to accurately describe the heart ache and pain of losing a child.

My child.

The pain is so intense I thought my heart would stop.

Grief causes your heart muscle to weaken.

It increases your chance of a heart attack.

It also causes your blood to become "stickier".

I was having anxiety attacks before Liam passed away that caused my heart to skip beats and to beat a few beats super fast and hard.

It was painful.

This started about 7 months before he passed away.

After he passed these episodes became frequent,

happening daily and sometimes multiple times a day.

I was waiting for my heart to stop.

I still don't know how it didn't.

19 months later and my heart still holds a constant ache.

Like a tree that's been through the tsunami and struck by lightening many times,

I'm damaged.

But like the old Sequoia trees in the National forest,

I'm still standing.

There is no timeline for healing.

No guide book to tell you what to do and how long it will take.

I hurt constantly but I am also healing.

One I'll wake up and realize that the healing is done and wonder when it happened.

The scars will always be there.

They'll always hurt but they'll make us stronger.

When you endure a severe injury your body will try to heal it any way it can.

The more severe the injury the more scar tissue it creates.

The scar tissue is meant to be stronger than the skin that was previously there.

It's your bodies way of trying to prevent the injury from happening again.

Personally my scars have never bothered me like they do some people.

The difference with these scars are that they are on my heart.

They are on my emotions and my soul.

You can never go back to the person you were before.

That person will never exist again.

That time to be that person is over.

The storm still rages for me.

The waters still drag me under until I have no air left in my lungs.

Then it lets me go before pulling me under again.

Even though the clouds are pitch black,

the sun still shines through every now and then.

For 18 months I didn't see the sun.

It didn't matter how brightly it shown,

I didn't see it.

I was too far under water to see.

Then one day things just changed.

The sun broke through and I laughed.

Not a fake laugh I've been using to hide behind,

but a real one.

That was just the beginning.

It started with my husband trying to get me active and off the couch because the doctors keep saying that's what I needed.

Then we went on a anniversary trip to the beach.

A few times the sun shone through the darkness and I laughed.

It wasn't enough to cause a break in  the storm though.

One day about a month ago he drug me up to the lake.

Said I needed to get out.

Mind you I find the lake very boring and it only aggravates my allergies so why would I want to go.

This day I gave in.

I don't know why because I never go.

About 2 hours into watching him fish and I couldn't take it anymore.

He could see it so he tried one last thing to keep us from leaving.

That's the day I tried kayaking for the first time.

Read all about it here...

That day things started changing.

The sun started shining through and I started feeling something I hadn't felt in a long  time...

Happiness.

Since then there have been moments.

Even some caught on camera and frozen forever.

How I've survived this long I can't begin to tell you.

I know I counted 1-10 a lot.

I focused on 10 seconds at a time.

Told myself that if I did good and tried another 10 seconds.

I still have days or moments when I survive 10 seconds at a time.

I put one foot in front of the other with no destination other than going through the motions to survive.

But then there are days or moments when my soul feel freer,

my heart feels lighter.

Me laughing at Chilli's after being made fun of for turning bright red after being sung Happy Birthday to by staff.

About a month after Liam passed I posted the following picture along with these words:

When Liam was born, I forgot who I was. Who I was and what I wanted didn't matter any more. All that mattered was what Liam needed to be healthy and happy. When Liam passed I lost part of myself again. Right now it feels like all of myself. My heart will never be whole again because part of it is in Heaven with Liam forever. But is not just a broken heart. It feels like a shattered soul. I don't know how to fix it. I don't know how to be better. I gave Liam my best. I keep moving forward because I don't know any other way. My entire life since the day I was born has been about surviving. I don't know how to not survive so I just keep moving. I keep moving yet in stuck. Like I'm on a treadmill. I just have to wait. And keep surviving.

Flash forward to now and I'm still confused.

I'm confused and I hurt but I haven't given up and have no plans too,

but maybe,

just maybe,

I will find my footing and my purpose again.

Processing

(Imagine is of Liam holding a brand new toy. His first Ugliest Pet Shop toy, taken Fall 2015)

          Liam's passing was hard on everyone. It was hard on us as parents. Hard on his sister and other family members. It was hard for our church and our friends. One group of people I've not really written on is the preschool kids and families. Yes it was hard for them.

          Liam started out the 2015-2016 school year with his class and gained a class of friends. He got to know them and they got to know him. Everyone was his friend. The parents also got to know Liam because we were all required to volunteer at least once per month. They got to see his smile and his crazy antics. Liam loved to make people laugh just as much as he loved to laugh. They got to see him grow and develop and change before their eyes.

          Then one day we threw them for their first curve ball when Liam showed up on oxygen for the first time. All the parents looked at me questioningly and confused. All they saw was this little boy, seemingly normal but smaller than the rest of his classmates. They had no idea he wasn't normal, or that he wasn't healthy. A few parents even had the courage to ask me why he needed oxygen. It was then, on that day, that I stood in front of a room full of Liam's classmates and parents and revealed the truth that Liam was special.

          I was scared to death as I drove him to school that morning. I was worried that the other kids would look at him like he was a freak. I was scared they would make fun of him and shun him. I was frightened to my bones that Liam would become self conscious. I had worked so hard to make Liam proud of his scars and his "button" (feeding tube), and comfortable with wearing oxygen. We just began to not have to tape the nasal cannula on. I didn't want all that work and progress to be ruined.

          I stood in front of this large group of kids and parents and explained that Liam's lungs didn't work as well as our lungs did. I explained that the big canister following Liam around held oxygen that we need to breathe. I explained how the tubing from the canister to his nose allowed the oxygen to travel from the canister, into his nose and into his lungs. I explained that Liam's lungs just got so tired sometimes that he needed a little help breathing. Then I stood there and waited for the questions.

          I stood there as the children stared at me, processing what they heard. I stood there as the parents held their breath and waiting for their reaction. Then tiny little hands flew up in the air.

"So he needs that to breathe?"

-Yes

"Does it hurt him?"

-Not at all. It just helps him.

"So he has to wear that thing on his face and stay with that thing?"

-Yes

"So that makes him like an astronaut!!"

I just stared at them letting that sink in.

"That's so cool. Liam's an astronaut! He's so cool!!!"

          I could have cried right there on the spot. I wasn't expecting that reaction. I looked up at the parents and a few smiled back at me. I didn't know what to say. I just smiled at them. I realized something in that moment. Little kids are so accepting of things that are different. They want the facts because their curios. Some stare because they're just trying to figure it out. Not one kid in that room said a negative thing about Liam being on oxygen.

          When it came time to go for outside play, I worried again. There was no way he could run around. I wanted to keep him inside but his teacher easily came up with another alternative. She took building blocks outside and sat Liam at a table. He happily build whatever his mind could think of. All  the kids took turns hanging out at the table with him because they didn't want him to be alone. Each took turn sitting right next to him. He was the happiest boy in the world at that moment.

          Liam going to school on oxygen the first time was nerve wrecking for another reason. I didn't know how his teachers would navigate moving him from one station to the next with the tank. I stayed in case they needed my help. Like the amazing people they are, they quickly figured out how to move him effectively as well as check the flow setting on his tank to make sure neither he no the other kids changed it. They knew the moment he got pale to either grab me if I was there, or call me. They knew the moment he was quiet that something was wrong. Because of their willingness to learn Liam's needs and work with him, he was able to attend school and effectively learn.

          Liam went from seemingly "healthy" to sick and needing oxygen quickly, but no one ever expected the phone call I would one day have to make. The phone call to inform them of Liam's sudden passing. That morning I had called to explain how I was keeping him home to take him to the doctors. They wished him well and asked me to keep them updated. The next day I had to tell them that he was gone. Class was in session already. I know it wasn't something they wanted to hear let alone get the news while trying to teach 27 other littles. I know it was hard for them to tell the kids what happened and to tell the parents.

          I know the parents held their babies tighter and did their best to explain what had happened. I know because so many times I've read about the passing of a fellow CDHer and held my son tighter as I fought the tears unsuccessfully. It's a pain that sticks with you but hides away until something triggers the memory. Seeing me, or hearing his name probably triggers their pain all over again.

          Since Liam's passing, I have become Facebook friends with several of the parents of his preschool friends. I've watched as they've changed so much over the last year. I attended their preschool graduation, where I watched every one of Liam's friends walk across that stage for their metal and diploma. I clapped proudly for them, even as I broke more inside because Liam wasn't with them. I saw pictures from their first day at Kindergarten as their parents dropped them off at school. Those proud faces smiling back at me through the computer screen. I've watched as they've grown taller and their personalities become more developed. I see them every day I pick up my daughter from school and they smile and wave at me. "Hi Ms Aubin!" they greet me as they walk past.

          I watched as each one turned 5 and parents posted pictures celebrating. And now I watch all over again as they each turn 6 years old. It's bittersweet. I'm happy for their parents that they don't have to know the pain of losing a child, but I'm broken for myself as my son will forever be 4 years, 5 months and 1 day old. I see some of their sad smiles when they look at me. Most choose to "ignore" me until I'm within a certain distance. I know it's hard for them to see me and that they fight their own demons each day. It's hard for me too. Some days I pretend I didn't see them. I don't want them to go through it all over again. Other days, I just stay in my car and hide so they don't have to see it. The few that do say hello in passing or actually attempt to talk to me, I make a huge attempt to put a smile on my face and pretend that I'm happy even when I'm not.

          I hear the emotions in their voice. I hear when their voice cracks. I see the tears build in their eyes and the look that they want to say more, but aren't sure it would be ok. They struggle with the mentioning of their children, like they aren't sure they should. The conversations always start out awkward and most end awkwardly, though I try to ease their fears.

          I struggle every day with the loss of my son. I want people to remember him. I want people to be able to talk about him with me. I want those preschool parents to not be afraid to mention their children to me. Yes I went through hell, but I can also celebrate the living. Sure the celebration or joy is much more muted than it was before I lost Liam, but you can't expect me not to be changed. I struggle every holiday not to sent treats to every kindergarten class that has one of Liam's preschool friends. I don't do it because it seems so weird. I don't send treats to the new crop of preschool kids for that same reason.

          I know that I'm probably already labeled that weird mom, you know the one who lost her son. After Liam passed, it seemed that news spread very quickly through the school and to the parents, Whether they knew Liam or not, they all seemed to know. When staff members started wearing CDH awareness shirts with Liam's name on the back, I'm sure lots of parents asked why. They still wear the shirts every Thursday so show their support and their love. To this day, parents all look at me weird. Before, I was just another mom at pickup. Now I'm that mom who lost her kid but still has to come pick up her other kid. Many times I've even heard hushed whispers. They weren't quiet enough for me not to hear them. One mom even tried hard to get me to rejoin PTA. Three days she asked me and tried coaxing me. When I laughed and said I'd never rejoin PTA again, she stopped trying. She never said a word to me again or even waved hello. That probably solidified my status as the weird mom but I don't care.

          Losing a child changes you. Things you once thought were important, you begin to see as a waste of time. Your time becomes more precious and you refuse to waste any because you know just how short life can really be. I understand why people avoid me. They just don't understand why I avoid them. Some days seeing Liam's friends causes so much pain that I can't handle it. Watching them celebrate birthday's seems to be the hardest. Some days I watch them walk in their little straight lines at the end of the day and just think how Liam should be right there with them. Some days the tears fall, some day's I can keep it all in. I don't expect anyone to understand what I'm going  through. It's safe to say that I only expect them to hug their children a little tighter each night like I wish I could do to my son.

          

The Tight Rope

2/2/2015 Little Liam was exhausted so he climbed up in my lap and fell asleep. It seemed by lap was his happy place. I'm glad I could give him that.

Today has been emotional. Liam's big sister is getting ready to turn 9. We're throwing her a surprise birthday party. On my way home from work I thought about how much fun it would be. Then a dark fog descended. Liam wouldn't be there. He will miss all the fun and we will miss his smiling face and his laugh.

How am I supposed to do this? How am I supposed to cope with this kind of pain and continue to live? I sat there in my car crying uncontrollably. My baby boy was gone. Just like that the scab was ripped off and I'm once again bleeding.

I sat there and thought about my daughter. I sat there and thought of what my husband would say once he saw all the party supplies. Especially the pinata. He's so predictable that I imagined he'd tell me that I was going overboard. I imagined my response to him. "She's the only baby I have left and despite whatever you may think, I'd do anything for her. I only have 1 now. My boy is gone. I can't have anymore kids and we will never be in a position where adoption is an option. She's all I have so yes, I'm going to spoil her on her birthday and any other time I feel like it."

All day I've been thinking about how every happy time, every holiday, every celebration will always have this shadow lingering in the corner for me. Last October, we threw Lanie her first Halloween party. We invited a ton of kids and our friends and family. The yard was full and over flowing with joy as the kids danced to the monster mash, gorged on sweets and played games. I imagine that Liam would have been right in the mix playing and laughing if he had been there. I could almost see the shadow, about his size, weaving through the crowd.

I'm at that "stage" in my grief where I walk this tight rope strung from two skyscrapers. As long as I keep moving forward, don't stop and balance correctly, I won't fall. It sounds easier than it really is. I think walking a real tight rope would be easier than the emotional one I'm walking now.