More Than Normal

Normal.

Normal was what we tried to give Liam. We wanted him to do normal boy things like play in the mud and climb trees. I swore one day I'd be taking him to ER for a normal broken arm instead of breathing or feeding problems. We tried so very hard to give him a "normal" life. I realize now that his life was anything but normal. It was so much MORE than normal. It was EXTRAORDINARY.

Liam taught us how to be strong. He was the strongest little boy I have ever known. He didn't fit in. He stood out. Like the brightest star in the sky. His smile shone brighter than the sun and when you saw it you couldn't help but smile too. His eyes would light up, as if there were actual lights behind his eyes, when he saw something he loved. He wasn't meant to fit in and get lost in the crowd. He was meant to shine and shine he did.

Liam shone so brightly until his last breath. He shone so brightly that his memory still shines in our hearts and in our memories. He was loved beyond measure, no he is still loved beyond measure.

I had so many fears for him, yet he was fearless. I was afraid he wouldn't fit in with the other kids at school but it was so much more. He stood out and yet they still loved him. He was proud of his differences and spread awareness in his own way. He loved showing off his Gtube. When he started having breathing issues and was back on oxygen, I wanted to keep him home. I was scared. Liam wasn't. He walked into that room as if nothing was different. Everyone had questions so I explained. One little boy said "so hes like an astronaut!" Liam's differences were celebrated. He was accepted despite them because he shone so brightly.

I was stupid to think normal was for Liam. He was so much more than normal. He was EXTRAORDINARY.

To quote Peter Pan "To live will be an awfully BIG adventure". Liam's life was an adventure. Every day, all day, he was exploring the world around him. Flying like Superman. Exploring the stars like an astronaut. Racing. The world was whatever he created it to be. He lived a huge life of adventure and love. A life fuller than most who live a long life. That's what I try to hold on too. Life is short and I want to live life like Liam did, for him. For me. 

New Chapters

I won't lie, losing Liam took a toll on our marriage. It's an every day battle to not become just another divorce statistic. But it's worth it. Last weekend we took a spontaneous trip to Morro Bay, just the two of us. It was relaxing and so beautiful.

Saturday morning we ate breakfast at the Blue Sky Bistro. They're vegi scramble and biscuits and gravy were amazing.

It was really cold so we kept having to go back to the hotel warm to stand next to the heater. Even so we got a lot of walking in. We walked through the thrift stores searching for items to decorate our new home when we move. Then we walked to the Lil' Hut for lunch. Justin loves their clam chowder bread bowls. This time I decided to try their fish and chips. They were pretty good.

The sunset was beautiful Saturday night. It was the first time we'd ever got to see it set on the left side of the rock. Usually we're there during summer when the sun sets on the right.

This picture makes it look like there's an angel in the sky. 

We're ready for a fresh start. A new chapter to start. 

Grief Journal: Hurtful Words

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

"It's part of God's plan"

No. No it's not. God is not vengeful. He sees all and knows all and weighs the options before choosing the right path. Yes he could have saved Liam but what would have been the price? Would that outcome have been worse? Only God knows. My child was not taken by God. 

"At least you can have another"

For starters one child does not and can not replace another. Lanie did not replace the twins I miscarried. No other child can replace my Liam. Second, no I cannot have any more children. I suffered a uterine rupture during my pregnancy with Liam so it's too dangerous to try. My tubes are tied and I'm facing a hysterectomy due to health issues.

"You need to move on"

Imagine your life without one of your children. Can you? Can you imagine how you'd feel if one of your kids died? The heart ache that would follow? There is no moving on from losing a child. There is only trying to live each day with a whole in  your heart. 

"You lost a kid? Yea I know how that feels. I lost my grandpa (dad, mom or substitute anything here)"

I too have lost a grandparent and a parent. It's NOTHING and I mean NOTHING like losing a child. Your child. 

"At least you have your daughter"

Again one child does NOT EVER replace another. EVER.

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.

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: Thanful

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

Finding something to be thankful for is hard. Almost two years later and I'm still struggling to tread water. The things that come to mind wouldn't be what most would probably think of but grief is different for everyone and there is no normal.

I'm thankful for my cats. Jack is my therapy cat in every sense of the word. He can feel my anxiety and my pain (maybe even my PTSD/depression flare ups) because every time I have a bad day, he's right there in my arms. And Ozzy, our 20 pound Maine Coon, is always making me laugh. He doesn't like cuddles but on my bad days he will day on my feet.

Jack

Ozzy

I am thankful for my daughter Lanie. Most days it seems that she's the only reason I get out of bed. She's beautiful and smart and has such a loving heart.

Lanie and Me.

I'm thankful for my soft turquoise blanket that I like to caccoon my self in when I'm not feeling well. And for my heating pad.

I am thankful for the family and friends that have stood by me during this journey of life after loss. It hasn't been easy. I am also thankful God gave me an outlet and a way to help others through Sent from Heaven.




Click here to view the entire list 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.

Breaking Down

9/19/2012 Life through the bars. Liam's 13th hospital stay at just 14 months.

Just when I start to grasp some resemblance of "put together" a video pops up and I lose what little grip I have. Life isn't fair. In fact it sucks. I'm angry and hurt. It's been a rough month. I've tried to hold myself together but the glue just won't hold. Last week my iPad broke. It just turned itself off. After dealing with Apple support, they came to the conclusion that it had a hardware malfunction. I have no warranty because it ended last year so it could cost me $299 to fix it if it's fixable or I have to outright buy a new one which is like $600 for the same one. Stay with me here because I promise I have a point to this ridiculous "my iPad broke" story.

I didn't realize before it broke how much I actually depended on this thing. You see I have really bad anxiety. I have games and books on that thing that help me keep it under control. Sounds stupid I know but if you suffer from anxiety, you know how serious this is. I also HAVE to read every night before bed. There's no, and I mean NO way I can not. If I don't then I can't sleep. Not even kidding here. Since it broke, I've had to result in reading books on my iPhone, which isn't the XL. Hey at least it works.

This iPad though I also use to run my online businesses. I'm an It Works distributor as well as have my own online boutique. All info for both were on said broken iPad. I also manage and post to Liam's Facebook page as well as Shooting for Liam and Sent from Heaven. It's also the only device I used to check all my emails. Basically my whole life was on that thing and now its a pile of junk.

What frustrates me even more though is that fact that all the games I downloaded for Liam are on there. Sure I could re-download them on a different device but all his progress is lost forever. He passed away so it's not like he could just re-do it all. When you lose a kid, you tend to hang on to as much of them as you can for as long as you can. At least the pictures and videos I had on the iPad were backed up on the cloud as well as an external hard drive.

So since said iPad has died on me, I've been on edge to say the least. Then came yesterday, the hay that broke the camels back. First my car battery was dyeing on me and had to be replaced before it left me stranded. Then I hang my brand new letterboard on the wall on a hook that's been holding something heavier for years now, and not 5 minutes later it crashed to the floor bouncing off the counter then shattering into a bunch of tiny pieces. The frame is a goner. That's when I lost it, something that was unavoidable apparently because I couldn't stop it for anything.

I found myself alone, hiding under the blankets on my bed, crying. When I could finally hold myself together I got up for something. That's when I found the cat scratching up my brand new purse that my aunt had just given me for my birthday. Again, I lost it. Like seriously WTF?!?! Now that you've got an idea of how this last week has been, imagine two month of crap like that blindsiding you. Sucks right? So here's the hook I promised you....

My melt down wasn't even about any of those things. Sure I'm upset about all of it (especially that iPad) but did it deserve an all out sobbing melt down? On it's own no. But coupled with what I'm going through, hell yes!

My husband commented "Hey it's ok. It can all be replaced". Innocent enough. My reason?

"Oh we can just go replace my letterboard? With what? Oh yea like I have $299 laying around to fix my iPad. Sure why not. Lets go do that! What about my son? Can't replace him!"

And there it is folks. The root of the problem. My son whom I lost and can't replace. The one that I miss every second of every day.

Today was rough but I barely had myself put together. The hold was fragile. Then a video popped up of Liam 2 years ago today and again I can feel myself being pulled under water just like that. That's child loss. Every day I live with ups and downs. Some days are better than others but I never stop missing Liam.

Click here to see the video of Liam talking. 9/19/2015
Click here to see a video of Liam laughing 9/19//2012

21 Months Later

Photo's taken September 18, 2013

I've been trying to concentrate on planning our second annual Halloween party and all the fun things I want to do next month with Buggie. Truth is, it's all just a distraction. A distraction from the fact that, yet again, Liam will not be with us for any of the upcoming holidays. Planning things usually helps me keep my mind off of the sadness but it's hit me like a ton of bricks. I can feel depression grabbing my ankle and trying to pull me under the waters I've been trying so hard to keep my head above. I want to do all the things we weren't able to do when Liam was here because he was always too sick. I want them for my daughter. But I also want to do nothing but stay curled up in bead in sweat pants and hide from the world. Every day is a battle. Some days easier than other days. Still I put a smile on my face and continue on even when I don't feel that smile. It'll be two years in December. People will say things like "you need to move on" or "you need to get over it". What they don't understand is there's no moving on from the loss of a child. You carry it in your heart and in your soul until your reunited. There is no moving on. Losing a child is nothing like breaking up with a crappy boyfriend. You feel the loss of a child every day in everything you do. When your walking through the house and your no longer stepping on hotwheel and trains. When your doing the laundry and there clothes are no longer there to be washed. When your making dinner and there's one less person to feed. When you go somewhere fun like the fair and you and your husband turn to look at each other and say that you feel you've forgotten something but you haven't forgotten a thing. Your just missing a child. I wish I could hold my little lamb and tell him how much I love him. I wish I could smother him in kisses and play cars with him. It never goes away.

❤️💙Liam❤️💙

Child loss awareness month is October. Please help spread awareness. If you have an angel, feel free to share their name so we can pray for the when we light our candles on the 15th for the wave of light.

#childlossawareness #cdhawareness #pulmonaryembolism #littlelamb#alwaysmybaby

A Second Birthday In Heaven

I sat down many times to post about Liam's would be 6th birthday.

Every time I couldn't find the right words, but I'm starting to realize that there will never be the right words when it comes to the loss of my son.

As a mom you do all you can to keep you babies strong, healthy and even happy.

So when Liam was born with CDH I blamed myself even knowing there was no blame to be made.

I had spent every moment I possibly could by his side as he fought for life in the NICU.

When we brought him home I become more than his mother.

I was his nurse.

His nutritionist.

His physical therapist.

I was his caregiver.

All of that came before being his mother because his health came first.

I sucked it up and did whatever I had to do to help him.

After all I was his mother and it was my job to care to him at whatever cost.

When he came down with a "cold" in November 2015,

I followed all protocol we had set in place with his doctors.

I followed every step.

When it seemed he was getting better then suddenly ill again,

I took him into urgent care for chest X-rays as per protocol.

They refused saying his lungs sounded to good and he was too happy to have pneumonia.

So I took him home feeling that everything was ok.

But as the night went on I became uneasy.

He got worse each hour that past.

I wanted to load him up and take him to Children's hospital but because I had just taken him to Urgent care we reasoned that it couldn't possibly be so bad that we couldn't wait until the morning.

The next morning everything happened so fast and before I knew it I was sitting in the ER being told to call my husband and get him there asap that things were more dire than I could have imagined.

Next thing I know I listening to the doctor call TOD.

I was angry.

I was shocked.

I didn't want to believe it.

I begged Liam to come back.

And I felt like a failure.

I was his mom.

His nurse.

His caregiver.

I knew him better than ANYONE.

I should have been able to save him.

But I couldn't.

Still I blamed myself.

The moment his heart stopped,

a part of me died with him.

The me I was before ceased to exist.

And finding the words to explain the pain has been difficult.

There won't ever be the right words to explain how deep  the pain cuts.

(Liam's 3rd birthday)

As Liam's birthday approached I struggled with what to do.

Do I get together with those who loved him to "celebrate" and remember,

or do I suffer in silence and not even attempt to roll out of bed?

At the last minute I decided to give it a go and see if anyone wanted to come have lunch with me.

Honestly I didn't expect many people would want to sit with me through this day.

I honestly thought that most people wouldn't want to take time out of their day to sit with a mom who lost her baby and see her broken.

I was wrong.

More people showed up that I thought would be possible.

More people texted me to let me know they were thinking of me.

As another blogging mom says often,

"Love shows up"

That's exactly what happened.

Love showed up.

So much show that despite the heart break over losing my son and not being able to hold him and spoil him on his special day,

that it kept the tears at bay.

We laughed.

A lot.

Everyone told me how much they loved my little lamb.

Everyone sat with me and took my mind of the heartbreak for a little bit.

I watched everyone as they laughed and chatted.

I watched the kids play and be happy.

And I thought how amazing it was that this little boy of mine touched so many lives that they willingly came to celebrate and remember him on his day.

Some even brought presents for Liam's corner.

I can't even begin to tell you how special that is to me.

Some brought donations of toys for our care packages we put together for Children's hospital in Liam's memory.

LOVE SHOWED UP

(Big sister Lanie with sparklers for Liam's birthday)

At the end of the day the three of us celebrated in our own way.

We ate pizza for dinner because that's what Liam would have wanted.

And we had cake.

Then we set off a few fireworks and sparklers for him.

(See the video here)

I kept asking myself,

"what do I do? I can't buy him presents. I can't spoil him, hold him or cover him in kisses. What do I do?"

Things just fell into place.

I see that know but I couldn't see it then.

It may not have been a huge party like I would have done if he'd been here,

but it didn't have to be because love showed up.

To everyone who joined us physically and emotionally:

THANK YOU!

(Liam's corner decorated for his birthday. I found a mini pinata, a mini happy birthday cake banner, and a mini card with a goofy monster on it for him)

Pulmonary Embolism

On December 15th 2015, I lost my son to a Pulmonary Embolism. It took everyone, even his doctors by surprise. At the end of November Liam caught a cold like virus. Because of CDH his immune system couldn't fight it off. His body tried for weeks but because of his weakened immune system, the cold like virus caused an infection in his blood. The blood infection in turn, caused a blood clot that traveled to his lungs. By this point his body was too weak to fight. The ER doctor suspected the blood clot when Liam quickly went down hill. One minute Liam was sitting there and a few minutes later he started having seizures and his heart stopped. The doctor used an ultrasound machine and found a blood clot in Liam's neck. The clot had got lodged there and cut of the blood supply to the brain causing a seizure. The nurses tried over and over to get IV access but Liam's veins were too calcified from years of pokes and IV's. As a last result they tried to get a bone IV to delivery the adult strength medicine to break the clot up. The meds had never before been delivered via bone IV so they weren't even sure it would work, but they had to try something. They never got the chance. After Liam's heart stopped for the 3rd time, they couldn't get it to restart and we lost him. With Rare Disease Day coming up on February 28th, I wanted to share one of the rarest diseases Liam suffered.


What is a Pulmonary Embolism (PE)?
A pulmonary embolism is a blood clot in the lungs.
Most times, a pulmonary embolism is caused by blood clots that travel from the legs or, rarely, other parts of the body (deep vein thrombosis, or DVT).


What are the symptoms of PE?
Shortness of breath
Chest pain
Cough
Leg pain and/or swelling
Clammy or discolored skin
Fever
Excessive sweating
Rapid or irregular heartbeat
Lightheadedness or dizziness

Can it be treated?
Yes but it's important to get immediate medical treatment. Without treatment, PE can cause death. Treatments can include blood thinners, meds to break up the clots and certain procedures.

Are PE's fatal?
If not caught, yes. It's very important to seek immediate medical treatment if you suspect you may have a PE. The mortality rate for adult who suffer a PE is 15% overall. That's 42 in every 283 PE patients.

Can a child suffer a PE?
A pulmonary embolism in children is rare but can happen. 0.9 in every 100,000 children with a 10% mortality rate.

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.

Ramblings of a Grieving Mother

I haven't forgotten to post, I've just started several post but never finished them. It's like I can't ever finish a thought. All I seem to finish typing are ramblings. The ramblings of a grieving mother. Maybe that's the post I should share. The ones that start out so strong and with a point and then just like a snap of fingers, the thought is gone. Not gone but unable to grasp it in the sea of emotions and floating thoughts fighting to break free.

I've been so busy lately. I've purposely took on so much more than I know I should have just so I don't have time to truly sit and think. Or sit and feel the pain at its rawest. I get done with one project and add two more in it's place. I need to slow down, I know I do, but I can't. I literally can't. I don't  know how and I don't really want to if I did.

We had a Sweet Sisters birthday party at our church. It kept me busy for a few weeks. Team Kids and Simple Supper started back up so that leaves my Wednesdays chaotic at best. We have our first event this Saturday for Sent from Heaven. I've been busy shopping for supplies, creating centerpieces and writing speeches. I'm excited that  our nonprofit has come so far in such a very short time. I have no doubt that Saturday will be hard when I have to get up in front of everyone and tell my story of loss. I've yet to tell it without crying. Then it's all statistics and facts from there.

Lanie's 9th birthday is coming up quickly. I'm also busy trying to plan a surprise birthday party for her. I didn't realize how hard that would actually be. In the midst of this, I'm also trying to plan a baby shower, a gift for my husband's birthday and a revamp of my daughters bedroom that includes a new bed. One I have to order and put together. Plus I'm already planning this years CDH awareness picnic, organizing our toy drive and helping run a nonprofit. I'm not bragging. I'm just emphasizing how busy I'm trying to stay because when I stop, the pain sets in.

I don't want to feel totally broken inside. I can handle feeling physically broken but emotionally broken is a whole new level of pain that hurts beyond imagination. I have my moments. I can laugh with my coworkers. Enjoy a cup of coffee. See a movie. Read a book. There was a period of time when I could do none of those things. I would sit there crying uncontrollably or I was frozen, starring into nothing. I could easily be that again, on my worst days I am, but I don't want to be.

God's promise states that Liam is in heaven. He is completely healed and made new. God's promise states that I will see him again when I get to heaven. I cling to that promise like a life preserver in the middle of a harsh storm in the ocean. That promise gets me out of bed each morning. That promise got me to rejoin society and return to working. I'll never tell you it's easy. I'll never tell you that I'm over it. None of those things are true. I will tell you that things get different. The change isn't easy by any means. It's like surgery, it hurts and it's cutting a piece of yourself off your body. A piece you didn't want taken away. When you heal, it leaves this huge "ugly" scar. You'll never be the same.

You spend the rest of your life missing that piece in every moment. Especially holidays, birthday and any other celebration. There will always be that shadow that follows you around. You can't run from it because it's part of you now. It's in everything you do. Let me let you in on a secret though; that's not always a bad thing. Because of Liam Sent from Heaven was born. He's not the only reason but he's my main reason. We all have our own reasons. We do it for our own angels.

I had a choice. I could have ignored God calling me to be a part of this. I could have stayed home, comatose and shattered, where I would never heal. The truth is I wanted to heal. I wanted to get better. I don't want to "get over it", I want to live with it instead of ending my life to end the pain. Helping others going through what I'm going through is my band aide. It's aiding my healing. When your grieving you have to find your band aide unless you want to live with a gaping wound.

I won't begin to tell you that I know how this life will play out. I won't tell you after such and such time, things will just be better. There is no timeline. No expiration. No finish line to this pain. Like I've said a million times, it doesn't go away. It changes and becomes something different. Like energy. You can either choose to let that energy burn you, or you can choose to focus that energy and make it fuel you. My hope for anyone struggling with the loss of a child is that you let that energy fuel you to do something good.

Remember, God knows his plans for us. He's seen all and knows all, more than we can even begin to fathom. He wants good for us. He wants us to prosper and grow. He doesn't want us harmed or hurting. He doesn't take our babies from us. Yes he could have saved them, but he sees all and knows how any and every situation would play out. He chooses the best. Don't be angry at him, be angry at the devil who decided to pick on our babies. That is the hardest thing to remember when your hurting. Trust in God and his plans. One day they will be revealed to us.

“For I know the plans I have for you,” declares the Lord, “plans to prosper you and not to harm you, plans to give you hope and a future.” – Jeremiah 29:11

Trust in You

Hubby made a comment earlier.

He said that this last year has been the hardest year of his life.

He said "Trust in You" came on the radio the other day.

My brother in law,

nephew,

and husband,

all stopped working to listen to the lyrics.

They said even though they heard the song play in Liam's memorial video,

and on the radio a million times,

they never stopped to actually listen to it.

The song talks about how God is always with you.

How you ask God to give you miracles,

but it's not always how you wanted them,

or when you wanted them.

It's about always trusting in God,

no matter what hardships you face.

When I choose this song for Liam's memorial,

it felt right.

I was so broken and so lost.

Truth is that I still am broken.

I will always be broken.

I had two choices when Liam passed.

I  could be angry and deny God.

I could fight his every push.

I could turn away.

Or I could throw myself down at God's feet,

at His mercy,

and give him all of me.

I choose to throw myself at God's feet.

I choose to offer myself up to him.

I choose to follow God's path for me.

Why?

Because I wanted to trust His promise that my son was in heaven.

I needed to trust that my son was safe.

I needed to now that he was now forever loved and sheltered from pain,

thanks to God sending His son to die on the cross for us.

This past (almost) 10 months have been so painful.

I won't ever say that I don't miss my son to the point it's physically painful.

The very truth of the matter is that,

if it wasn't for God,

I wouldn't have made it through this last year.

That song got me through the toughest time in my life.

It reminded me that God was always there for us.

We haven't been thrown into a cruel world without protection.

We aren't navigating this world without a map.

He has seen everything.

He knows everyone's futures,

their paths.

"When You don’t move the mountains I’m needing You to move
When You don’t part the waters I wish I could walk through
When You don’t give the answers as I cry out to You
I will trust, I will trust, I will trust in You"

Listen to the song and watch Liam's memorial video by clicking here

October 2014

Capture Your Grief Day 4

Capture your grief day 4: What kind of loss(Es) do you have? What were the statistics of those losses?

I've been pregnant 3 times, yet I have only 1 out of 4 children living.

*My first pregnancy, I lost twins a few weeks apart. I later found out that it was most likely vanishing twin. This occurs in 21-30% of multi fetal pregnancies.  (Read more here)

*Miscarriage occurs 1 in 4 woman. 

Lanie was born a healthy rainbow baby. Then there was Liam and my pregnancy with Liam. Sometime during pregnancy my uterus ruptured (we're guessing it occurred at the end of March/beginning of April judging by when the pain and contractions started).

*uterine rupture occurs 1 in 1,146 (.07%)

*CDH occurs 1 in every 2500 births. 

*bilateral CDH is extremely rare occurring in less than 1% of CDH cases. Most die in utero, leaving only 35% to survive pregnancy. 

*50% of babies born with CDH do not survive. 

The doctors gave Liam a 0% chance at surviving NICU. They didn't think they'd get him stable for surgery. Yet Liam survived and left NICU at a mere 48 days. I say "mere" because the majority of CDH babies stay in the hospital anywhere from a few months to even years. Liam was also born with a partial biotinidase deficiency. This meant his odds of being failure to thrive increased exponentially. Not only did CDH create a higher risk of SIDS but his partial biotinidase deficiency increased those odds. Read more about biotinidase deficiency symptoms here.

*One in 109,921 for partial biotinidase deficiency.

 (Read more here)

*Pulmonary Embolism occurs .43-4.7% in children. 

(Read more here)

(Picture is of Liam sleeping soundly in my arms on 10/04/2011. We were at UCSF for a NG feding tube.)

Capture Your Grief Day 1

October is pregnancy, infant and child loss awareness month. I will be taking part in the Capture Your Grief challenge in memory of my son Liam. 

Day 1: A picture of you. How are you doing today?

Honestly I'm exhausted. Physically and mentally. My world has been turned upside down. I want to be able to reach out and hug my son. I want to call his name and have him come running. I'm also numb, or dissaccosiated. This morning, at 5 am, we woke up to a heavy shelf in our bedroom falling off the wall, taking the trim with it. It was full of books and photo frames of Liam and other things. We lost a few photo frames and a cross my aunt Rose gave me, but the little boy cherub holding a cat statue survive unscathed. I'm so thankful for that. Emotions ran high and rampad. When I explained to a friend what happened I started to go into freak out mode. That's when I just became numb. It was too much. Metaphorically, I've been feeling like the walls were crashing down on me. Now I guess they physically are as well. It seems... Appropriate to how I feel really. I could laugh at the irony. The hurt from losing my baby is something that is seared into my soul. I will heal, but there will be scars so I'll never be like I was before. Today, right now, I'm just exhausted. 

Me holding Liam's monkey that I took and had a 2 pound weight put in so its close to his birth weight of 2 pounds 4 ounces.