Guilt

Grief is a very unpredictable thing.
One moment you are laughing at your firstborn and the way he walks around with his hands in the air....the next you are crying because you just remembered your angel child will never do that.
I was told by a friend that it sounded like I was in the "anger" stage of grief.
I do not disagree.
I googled it. Found the stages on a website and thought I would share a piece:

"During grief, it is common to have many conflicting feelings. Sorrow, anger, loneliness, sadness, shame, anxiety, and guilt often accompany serious losses. Having so many strong feelings can be very stressful.
Yet denying the feelings, and failing to work through the five stages of grief, is harder on the body and mind than going through them. When people suggest "looking on the bright side," or other ways of cutting off difficult feelings, the grieving person may feel pressured to hide or deny these emotions. Then it will take longer for healing to take place."

I chose this section to share because I believe I am "stuck" in the guilt part of grief.
I feel guilty for not crying all day, every day.
I feel guilty for laughing.
I feel guilty for not visiting my angel baby's grave today.
I feel guilty that I'm not wallowing in a dark, depressing pool of sadness and tears.

Guilt is not listed as one of the "steps of grieving" but it should be.

Today, our area got hit with a pretty nasty storm. I drove down the road a mile or two to go pick up some drinks. As I was driving and watching the incredible power of a thunderstorm beat upon my windshield, a thought drifted into my mind.
What if I drove into the middle of the pasture, stood on the roof of the car, and reached my hands up toward the storm? Would I get hit by lightning? Would it be such a bad thing? I would see my baby again....

Now I realize this is an awful thing to say. No one should ever admit they have thoughts these things. That is what our society tells us anyway.
So I feel guilty for saying it, for feeling it, and most of all, for putting it out there for others to read. But I think it is important for me not to hold anything back.

So back to what I started out saying: Yes, I'm angry, but most of all I feel guilty. I think about it all the time. Things I should have done, would have done, could have done. 


I know it's too late...but guilt knows no timeline.

The little things

Today, I went to Wal-mart with my mother. We were chatting on the way there and she asked: " So, how are you doing through all this?"
Such a weighted question.
I tell her, "It's the little things that get to me."
Through out the days, I'm not drowning in sorrow; it's more like I have this constant, never ending feeling that something's missing. Of course I know what it is, but it's a shadow that follows me around.
Just a second ago, I was watching a video a friend messaged me and on the right of the website was an ad for cloth diapers.
*heartbreak*
I was planning on using cloth diapers with Corbin, seeing that reminds me of what I had planned and how now I don't have to do it.
The other day I went to Wal-mart and as I was checking out, I could see into the photography room where a family was getting their pictures done.
*heartbreak*
This, again, reminds me that I had planned on getting Corbin's pictures professionally done when he got out of the hospital.
I'm reminded how now I don't have to set up appointments for physical therapy, I don't have to schedule another hearing test, I don't need the four boxes of newborn diapers in the guest room, I don't need the blue bassinet in the bedroom, I don't need the baby bath, I don't need all the hundreds of baby clothes....it goes on and on and on.
I am reminded every day on what I no longer have to do, what I now have time for; well you know what? I DONT want to have time to work out, I DONT want to have time to go grocery shopping. I WANT my baby back. I want to be busy and hungry and sleep deprived.
Instead, I take care of my toddler but nothing else. I'm not swamped with two kids under two. I don't have to lug a toddler on my hip while balancing a diaper bag and an infant car seat. I don't have to get up multiple times during the night to nurse my newborn. I get a full nights sleep with no interruptions.
Like I said, I have a shadow. A shadow of Corbin following me around, reminding me of what all the plans I had. The photos, the outfits, the playdates.
No more.
No more plans, no more schedules.
I have all the time in the world to think about him.

God took him to his loving home...

The morning of the wake, I open my eyes, not wanting to go on with the day. I want to stay in bed and never get up. I toss and turn trying to go back to sleep.
It doesn't work.
My mom woke up with the Monkey so I could sleep in then sent him off to church with my father-in-law. Mom and I arrive at the church at 11.

Thankfully there isn't a lot of people. I am worried that I will walk in and be bombarded with condolences. My hubby had been bugging me the past couple of days about how he didn't think I should go. He kept saying that everyone was going to hone in and surround me, making me cry, and upsetting me. This only makes me more nervous.
I sit, feeling the eyes following me.
I listen to the songs, not singing along. Colt is wiggly and not wanting to sit still. I have to get up and chase him across the church a couple times. After the singing, the preacher stands up.
He says:
"God didn't give me a service today, so I will read a verse."
He goes on the read Psalm 23:
The Lord is my Shepherd, I shall not want.
He makes me lie down in green pastures;
He leads me beside waters of rest.
He restores my soul;
He guides me on the paths of righteousness for his name's sake.
Even though I walk through the valley of the shadow of death,
I do not fear evil,
For you are with me;
Your rod and your staff,
They comfort me.
You spread a table before me
In the presence of my adversaries;
You anoint my head with oil;
My cup runs over.
Surely goodness and loving kindness
will follow me
All the days of my life,
And I will dwell in the house of the Lord
For the length of my days.

"We will not have a service tonight as tonight is the wake for Corbin Caruthers. We hope to see you there"
I'm crying. People start coming around to give me a hug, shake my hand, and offer their "sorrys" and "I can't imagine." I can only nod and say thank you.

The programs for that day's service are what really get to me.
God took him to His loving home:
God saw him getting tired, a cure was not to be,
He wrapped him in His loving arms and whispered "Come with me."
He suffered much in silence, his spirit did not bend.
He faced his pain with courage, until the very end.
He tried so hard to stay with us but his fight was not in vain,
God took him to His loving him and freed him from the pain.


This puts so perfectly and eloquently how I feel about Corbin's fight. He fought so hard trying to stay with us. He never gave up despite all his suffering and pain. I felt relief when he passed because I knew he would never suffer again. I knew that God would heal his heart and lungs. He has no more tubes, no more wires, no more machine breathing for him. He is a perfect little angel now.

I tell my mom I want to put that passage on his headstone if I can. Along with a sleeping baby angel on top of the headstone.

The hours till his wake fly by. I kept myself busy cleaning and organizing the house. I don't give myself a minute to sit and think about what the evening is going to be like.

It is time.
We get dressed, drop Colt off with a friend of a friend, since all the family will be at the wake.
The drive down, my hands are shaky. I'm so nervous. I've never been to a wake before. I don't know what to expect.

We park in front, we are the first ones there. The Hubby takes Corbin's memory box inside.
The room is quiet.
There are about a dozen flower arrangements placed around his coffin. I remember feeling surprised that so many people sent flowers. There are flowers from family, from my mom's former workplace, from my dad's formal workplace, from a friend in LA, California, from Cody's coworkers, and from a high school friend of mine I haven't talked to in 6 years.
I take pictures before anyone arrives. We place the memory box in front on his coffin on the floor and open it up. I arrange some of his ultrasound pictures inside. We also place three 8x10 photos next to the coffin of us holding him.
People slowly start arriving. Seeing other mothers makes me cry every time. I know that they know the depths of a mother's love and even if they can't understand, they know how much it must hurt. I am surprised by how many mothers have lost a child. Be it a miscarriage, an infant loss, or the death of their 36 year old in a car accident; I am not alone.

I try and greet everyone. I'm not sure what to do with myself otherwise, so me and my best friend Rachel go hide in the coffee room. We come out periodically to "make the rounds" then go back and hide.
My brother arrives. I just hug and hug him.
Rachel sticks to my hip the whole night. I don't think I would have kept it together so well without her. We got asked about 4 times if we were sisters.
"I knew you had a brother, but I didn't think you had a sister!" My aunt-in-law tells me.
A lot of the Hubby's co-workers show up. I'm thankful he has guys to talk to. They will be able to keep his mind off the reason he is here and make him laugh.
I go to talk to another in-law. She has a two year old and immediately starts crying when she sees me. I can't help but start crying with her. She tells me that she would call her mother-in-law every day to see how Corbin was doing. She said the day she found out he passed, she just cried and cried. It helps, in a strange way, when I hear how hard other people took his loss. Maybe it's because they never met him but they were affected so strongly that makes me feel better. That his memory will never fade.

A couple that lives 2 hours away came to show their respects. I have met them once in my life yet they kept up with his story through the Caring Bridge website.

The Hubby's cousin-in-law's daughters colored pictures for Corbin. They came up to me and told me that they put the pictures in his memory box. I go over to look and burst into tears. One of them says "I miss you Corbin." I'm so moved and so heartbroken at the same time. I wish they could have met him. But I can only cry.

Overall, it wasn't as hard as I thought it would be. Seeing his coffin there, in the middle of the room made me sad. I tried to avoid it mostly, as did my Hubby. It meant a lot that so many people showed up and that tears, other then mine, were shed.
I have never been so greatful for such a big family. I'm glad it went smoothly.
Tomorrow will be rough.

Blue feet

A good friend of mine called me yesterday. Monkey and her boy were born only a week apart. She told me how her cousin just gave birth to a little baby girl. Lately, that baby girl's feet and hands have been turning blue and she is very jaundice.
I immediately felt alarm for this baby.
I asked if she had taken her baby to the doctor.
My friend told me that yes, she had, but the doctors told him "that's normal for babies", "she's just cold".

Bull crap.

I want to emphasize very clearly the seriousness of what I'm about to say: Blue feet and/or hands on an infant is not normal, and it is not because of the cold. It is possibly a sign of a heart problem.
I should know.

When we took Corbin for his first echo, the first thing the technician asked us is if his feet or hands ever turned blue. The answer was no but Corbin never showed any outward signs of a heart problem besides heavier breathing. Later on, specially directly after surgery, his feet would get very blue. This was a sign of poor circulation. (read more here)

I knew when Corbin was born that something wasn't right. His eyes were swollen and his breathing was heavy. I asked the doctors when he was born about it and they said "it's normal, nothing to worry about." Turns out, it was far from normal. The swollen eyes were a part of Williams Syndrome and the heavy breathing pointed to his Pulmonary Stenosis.

I am writing this to spread the word about heart problems in infants. Congenital heart defects are the most common defects in infants. (read more here) So please, please, please when something is off or your don't feel right about something concerning your child, keep asking your doctor. Get a second opinion. But don't let them tell you "oh, that's normal for babies" because a mother's intuition is no joke. 

The Flower Garden

Picking a burial spot for your child is a very special thing.
We were offered a spot in our families "section" of the cemetery but it didn't feel right. He would have had to shared a headstone with the other family members around him. I didn't want that, I wanted something special. Something more personal.
So we went to the Flower Garden they have for the angel babies. Walking among the headstones and seeing the toys and teddy bears left on the graves was sombering. One gravestone has quite a few Thomas the Tank Engine toys over it; it made me sad. Sad that Corbin will never play with the toys he had waiting for him at home.
I didn't want just any spot. I wanted a spot under a tree near the edge of the Garden. I wanted this so that Corbin won't be surrounded by many more headstones and just seem like another grave site. He deserves something special.
We were able to "reserve" a spot near the edge and under a tall tree. As we were wandering around, looking at different headstones a huge thunderstorm rolled in. So we all had to get back into the car before the rain started to pour. We continued to drive around to get ideas about what kind of headstone we would like to have. I really liked the white ones. They weren't common but they looked just right. I decide that I would like to order a white headstone with a weeping angel over it. I know it's sad and not the "usual" but to me it is perfect. I just imagine a little angel crying over his grave, saddened that such a young life had to leave this world.

The next day we have to drop off the outfit we want him buried in.
I didn't know what I wanted at first, but when I saw that little blue onesie with a lion on it, I started crying. It was perfect. Corbin was a fighter and a lion seems so appropriate. I have been drawn to them since he was born and I feel like it represents him perfectly.
My son may have been sick but he had the heart of a lion.
I also leave a little wooden lion, his silkie that they put over his head at the hospital, and the blanket I crocheted to be buried with him.

We pick out the verse we want on the programs at the wake. I don't remember who posted it, but I found this verse on Facebook one day and it has stuck with me ever since.
Isaiah, 41.10:
Do not be afraid, for I am with you.
Do not be dismayed, for I am your God.
I will strengthen you, surely I will help you;
Surely I will uphold you with the right hand of My righteousness.

Later that day after we get home, Hubby's cousin-in-law stops by the house to tell us something. She says the town had ordered a new playset for the park and it had just arrived. Hubby's other cousin-in-law works for the town and wanted to dedicate the playset in honor of Corbin. He wanted to know if that was okay with us. Hubby and I can only nod through the tears...such a sweet sentiment. I love the idea that later in life, we can take Monkey down there and show him the play set dedicated to his brother.

Hubby and I agreed on something. We don't like hearing people say that Corbin "lost his battle" with his illness. We don't believe that. Corbin didn't lose. He fought and he fought till God came down and took him home. That's not losing. He is in heaven with the Father, no more illness, no more broken heart; he is healed and healthy and happy. I believe God was in that room that day. He saw my poor baby fighting for his life and he came down and told him it was okay to let go. I believe he took my baby's hand, said "It's time to go" and took away all his pain. Corbin wasn't there when the doctors were trying to start his heart back up; he was watching from above holding the hand of our Lord. This makes me smile.
He didn't lose at all. He reached his goal and won an eternity of light and love with no more pain. 

Fired

It's hard to describe the feeling I had when I woke up this morning.
I knew I was home, but I felt like I was supposed to be somewhere else.

It was like I was just fired from my job.

I didn't know what to do with myself. I don't have any rounds to attend, no doctors to talk to, and no baby to check in on. I grew so accustomed to my schedule at the hospital that now: I don't know what to do. I surprise myself by not bursting out into tears. I expected to wake up, forgetting what had happened the morning before and to be hit in the face with the reality of where I was and why.
But I never got hit. It didn't happen. No tears, no shock. It was more like I had never really fell asleep so there was no need to try and remember. Because I never forgot.
So I try to go back to sleep.
I didn't sleep well. I thought I would sleep good in my own bed, in my own house. But I only tossed and turned. I missed the bed at the McDonald house.
My back starts hurting so I get out of bed. I have to wait on the funeral director to call anyway, we need to go down to the funeral home to start making arrangements.
My first day home in over a month and I'm picking out caskets.

Two hours later, the funeral director hasn't called yet, so I call him. He tells me that we can head on down. I don't know how to prepare myself for what we are getting ready to do. My parents offer to go with us for emotional support.
I'm sure I'll need it.

Walking up to the front door of the funeral home feels like I'm walking into something I can't walk out of. Like once I go in, there is no coming out.
My first thought when I step through the door is: its cold. I take a deep breath in, trying to calm my nerves and keep back the tears.
I do not want to be here.
We are shown into a room to wait. The ceilings are tall, the wallpaper is blue floral, the furniture is sparse. It feels so quiet, so old.
The director walks in, apologizing for not calling sooner. He rambles off the usual condolences: "so sorry for your loss...such a hard thing...can't imagine your pain..."
Blah de freaking blah blah.
I just want him to cut the crap and get down to it. I can tell he's said it a million times and it no longer sounds sincere. Or maybe it was, I just don't want to hear it.

We go over the obituary. He asks what the baby's name was.
Was? Was?! My baby's name IS Corbin, he IS still my child and still very much a part of me. I just want to smack him.
We go over family names and and on what days we want the services.
When will the services be?
Where?
Which preacher?
Do you want thank you cards?
How about a memory book?
Do you want to see the chapel?
Do you want us to release doves?
Do you want to show a video?
Which songs do you want played?
How about flowers?
Will you have pictures?

It feels unreal. Like I'm watching a movie. I cannot be sitting here, discussing caskets and lining. Blue costs more then white...infant sizes are cheaper...fee for grave site, fee for digging, fee for tombstone base, fee for wake services, fee for funeral services, fee for transport.
Just take my arm while you're at it.

I don't stress about picking the perfect casket; he only has one. It's small and made of a very hard, crush proof plastic. It's a beige color. He says its 22 inches long.
"And will he...." I can't finish, I press my fist to my mouth to hold back tears.
"Yes, he will fit in here."
I forget he has Corbin's body in the building. He had to pick him up from the hospital the day before.
"Now, do you want to see him before the...?"
"No." I quickly answer. No, I don't want to see him. I want to remember my sweet baby the way he looked before his last surgery. Awake, big blues eyes following me around, his little fist curling around my finger. Not like he was the day he passed...cold, swollen. No, no I want to remember my baby when he wasn't sick.

We wrap up the details, check the obituary one last time for mistakes, then make our way out. We have to head to the graveyard next to pick out a spot.
I can't wait...

From two, to one...

The day started out like any other.
My alarm goes off at 8 am: I hit snooze.
A half hour later it goes off again. This time I'm up.
*sigh*
I look next to me at my snoring husband. I hate waking him up but we need to get ready to head over for rounds.
We stopped last night at Wal-mart to buy the nurses some goodies. Even though we know we're not leaving anytime soon, we felt like it was the right time to show them how much we appreciate them. We pick out strawberries, grapes, bananas, apples, and cupcakes. We grab the fruit trays before we leave the McDonald house.

8:45am
We check out like usual.
It looks like it is going to rain, so we drive over. We make it across the parking lot and turn to head onto the road in front of the hospital.
My phone rings.
"Ruth?"
"Yes?"
"Hi, its Adrea, the nurse practitioner from the PICU? Things haven't been going too good for the past hour. You need to come over as soon as possible. We are giving him CPR right now."
I blank out, I can't find words.
"Uh...okay..um, ya. You caught us on our way, we will be there in a few minutes."

I look at Cody.
"They're giving him CPR"
"What!? Oh shit."

The few short minutes it takes to park, walk, and make our way to the sixth floor are a blur. A confused, numb, and in shock kind of blur.

9am
We dump the fruit trays at the front desk and look down the hall. There are at least 6 people standing outside the room just watching. One of the nurses waves at us to come down.
I'm start walking...not sure what to think. As I get closer to the room I can't look.
I can't look in and see what is happening. Is he alive? Are they giving him CPR or have they stopped? What is going on!? My heart is racing.
These thoughts race through my mind in a matter of milliseconds.
I can only keep my eyes on Christy, the nurse. I try and read her face. She looks sad, fearful. I raise my eyebrows in a questioning look. She doesn't nod or shake her head, just directs me into the room.
I see about 10 people. The Intensivist is standing on Corbin's left, giving him chest compressions with one hand and directing nurses with the other. The Cardiologist is on his right side, directing other nurses and giving orders for medications. There is the respiration lady, watching. Another nurse comes in with a huge handful of epinephrin doses. She just dumps them into a container. Another nurse is calling out dosage amounts while another is writing them all down.
It is chaos. Controlled chaos. Like a fast running, well oiled machine.
The doctor waves me over to him. He gives me a hug with his right arm, while still giving compressions with his left. He tells me that Corbin's heart has stopped and they are trying to restart it.
I only nod, the tears flowing.
We navigate our way to the back of the room to watch.
Christy comes over to sit with us.
We watch as gases are read off: they are high but that is normal considering the amount of medications they have just given him.
They keep going.

9:10am
Christy tells me, if we ever feel like the doctors are pushing him too hard, we can ask them to stop. I am torn. I can't stand to see him like this but I don't want to be the one who says "stop". I couldn't live with myself if I was the one that told them to stop trying. Cody agrees.
They have to keep trying.

9:15am
They send gases to the lab again. Compressions still going. They give him doses of different things to try and help his heart start. I can't keep track of how many epinephrin doses he receives.

9:18am
Christy tells me to go hold his hand.
"I don't want to say it but I don't want you to regret anything."
She holds my hand and pulls me toward the bed. I move in next to the doctor to hold Corbin's hand.
It's so cold.
It takes my breath away and I start crying. I shake my head, knowing in my heart he is gone.

9:20am
They attach the resuscitation machine to his heart. The doctor motions us back, away from the bed.
"Clear!"
There is no loud noise, he doesn't jump off the bed. It's only a low charging noise as his heart receives a dose of electricity. But no heartbeat.
"Clear!"
Again, nothing.

The doctors stop, watching the monitors.
___________________ There is only a flat line.

What happens next, I honestly don't remember. I know the doctors came over to us to apologize, give condolences, answer any questions.
I know I'm crying, Cody is crying, the nurse Christy is crying.
I know someone told me that they are going to clean him up, take off all the wires, take out the tubes, close up his chest, and wrap him up so we can hold him.
I know I got hugs, sad looks, and apologies.
I know it started raining.
"God is crying." Cody says.
Thats all I remember.

We leave the PICU, staring at the floor, avoiding anyone who looks like they might talk to us. We head to the waiting room to wait.
Cody starts making phone calls. I pace the room. One second I'm fine, the next I'm imagining my sweet baby and how he was when he was home. Then I think about all the baby things waiting for him at our house and I'm crying all over again.
I call my mom.
I can barely get the words out.
"He didn't make it."
My mom can only say "Oh baby, I'm so sorry."
She doesn't have to say anything. I know she understands. She had a miscarriage when I was about 8 or 9. He was about 4 months old when he died. They were going to name him Elijah.
She knows what I'm going through, there is no need for words.

We go back into the PICU, not wanting to be alone. Turns out when you lose someone, you don't want to be totally along. You want to be around people who care about you.
So we sit at the front desk, talking to the receptionist.
I munch on the fruit that I brought for the nurses.
I joke that I'm going to depress any family that walks through the door. My eyes are swollen from crying, my face is splotchy, and I cry on the drop of a hat. "Welcome to the PICU" I'll say through the tears.
It makes us laugh, just for a second.

They are ready for us.
They have brought a courtesy cart of coffee and snacks but I'm not hungry.
They have cleared out all the equipment and brought in a new baby bed. Its clean, quiet, and empty.
The OR lights have been turned on, shining down on the baby, turning the room a calming, surreal shade of gold.
Corbin is wrapped in a hospital blanket with his own baby blanket over that.
What they don't tell you is that he doesn't look like himself anymore. He is very swollen due to all the medications. His ears have almost closed up, his eyes are very tightly shut, his tongue is swollen and he's not as pink anymore.
I don't want to lie: I'm scared to hold him. I swear I keep seeing his chest rise. I swear he is still breathing.
But I know he's gone. I feel a tinge of guilt for not swooping down on him to hold him. I stand away from his bed, just staring.
Crying.
I come closer to stroke his head. Most of his hair has fallen out but he still have a little patch near the back. It's still soft. I pull him closer to me. He's very heavy from all the fluids. It freaks me out and I stop. The guilt is killing me.
Why am I not wailing in emotional pain? Why am I not screaming at the heaven's to return my son? How can I be this calm!?
I bend down to be closer to him, wrap my arm around his neck and hug him.
"I'm so sorry baby. I'm so sorry."
I feel like I didn't do enough. Why wasn't I here every night to read him a story? Why wasn't I here more often during the day to talk to him? Would that have helped him through? Could I have done more?
The questions race, one after another. why? why? WHY?
Should we have done the surgery? He looked SO good the day before surgery. Better then he had ever looked. He was awake, eyes open, and a healthy pink color. Maybe if we hadn't of done it he would have gotten better. Maybe it was a bad idea. Maybe we killed him. It was our fault, we should have waited....
I tell myself to shut up.
"Quit blaming yourself, its too late now isn't it?" I yell at myself.
Which only makes me cry harder.
I wipe my tears on his baby blanket. I kiss his cold forehead and lay him back down.
Cody steps in to say his goodbyes.
"I'm sorry Peanut, you gave 'em hell though"
He leaves, he can't stand to stay, his heart is breaking.
I stay, bawling over my dead child.

The doctor told us that Corbin did put up one hell of a fight. He says that he touched many lives while he was there, more then most people do in a lifetime. He says they were all affected by him and were heartbroken to see him go.

Christy tells us that another nurse makes plaster molds of babies feet for the parents that lose a child. She says it will take about 6 months, but the nurse will make them for free and send them to us. Then someone brings up: "What are you going to do with all that breast milk?"
"Well crap, I don't know."
There is talk of a milk bank in Ohio. Or if they don't take it, the Red Cross might. I make a mental note to call them when we get home.
They tell us Corbin's body will go down to the morgue until the funeral home can come get him. They have already called Wallace and Wallace.
I sigh...it's too soon to be thinking about a funeral. I just lost my baby and now I have to pick out his casket?!
This makes me cry all over again.

12:00pm
We head back to the McDonald house to pack.
We have a lot of crap. It takes me a good 45 minutes to get everything packed and put into the van. One of the McDonald employees comes up to help. She is crying as she gives me a hug.
We first have to take out all the baby stuff from the van. I have collected clothes, a baby tub, bassinet, crib pillows, blankets, and baby items since we have been at the McDonald house.
I don't need it anymore.
"Just put it all back." I tell Cody, he only nods.
I tell one of the staff to put the bassinet somewhere and give it to another family that left before us. They had a preemie and would give me a hard time about stealing the bassinet. They are actually arriving at the McDonald house that day so I want to make sure they can have it.
We say tearful goodbyes to the staff. They have been our family for the past three months. We have spent many nights with them chatting, laughing, and picking on each other. They were truly wonderful people and I will miss them. They made our stay enjoyable despite the hardships.

The ride home is long, and it's pouring down rain. We have two cars so we both have three and a half hours to think by ourselves. I know I broke down about 4 times on the way home. Its not a good thing to be crying, driving, and trying to see through the pouring rain driving 70 miles an hour.

6:30pm
We arrive home.
I walk up to the door, mom greets me with a big hug before I get inside.
I cry into her shoulder, a wave of emotions washing back over me. Cody's dad comes out holding Colt. He immediately jumps from Curtis' arms to mine. I can't help but smile.
God, I love that kid.
I'm smiling and crying at the same time. I cry thinking that he no longer has a little brother. I cry because he doesn't even realize it yet. He's just happy to see his mommy.
I get more hugs and shed more tears, all trying to hold Colt. He won't let me put him down.

The house is (what I consider) a mess. I just sigh. I'll worry about it tomorrow.
I take Colt back into our bedroom and talk to Cody for awhile. We have to figure out what we want to do about the funeral. We are both so emotionally drained, we can only figure out that we want him buried.

I tell my parents about how our day went. My dad cries when I tell him about the books the nurse gave us. They have special books they give to the dad, mom, grandparents, and sibling of a child that passes away. I still haven't looked at them.

We get a few visitors, not many. I don't want to talk to anyone. I don't care what I look like, I know my face is still swollen from crying. I chat with Cody's mom for awhile. She also understands: she lost a son too. He was 36 years old and died in a car crash. She takes Colt home with her so we can get good sleep. I feel guilty sending him away but I also feel so appreciative that she is available to babysit.

I put together a memory box for Corbin. In it I put his first outfit, stuffed animals, his book I read to him, a figure the nurse Christy bought for me, and his other belongings. Cody breaks down crying when he sees it. It really means a lot and we make a plan to take it to the wake.



And that's my story of the day I lost my child. The day I went from having two kids, to one.

Williams Syndrome Awareness Week-Definition

In honor of day three of WS Awareness Week, I am sharing the story of another WS mommy. Her daughter Abi needed heart surgery, but no one was prepared for what would happen afterwards. This is an emotional piece full of fear and love. Please take a moment to read her story.


As I go through this experience, the shared stories of other WS mothers help me get through the day. Imagine your life without the internet...now imagine if you were going through something like this and had no idea anyone else had too. Just knowing that I am not alone and that there is a whole community of other people who understand is very helpful. We have all come together and become a tight knit and loving family. The WS Facebook page is full of questions and answers, photos, and information. I know if I ever need someone to talk to or a question about Williams Syndrome, these are the ladies to ask.


I know a lot of people have never heard of Williams Syndrome, and quite a few may not even care.
I just want those people to at least heard the words: Williams Syndrome. After you read this, then you will be that much more educated and maybe some day, you will have the answer to someone's question.


Williams Syndrome

Williams syndrome is a genetic condition that is present at birth and can affect anyone.  It is characterized by medical problems, including cardiovascular disease, developmental delays, and learning disabilities.  These occur side by side with striking verbal abilities, highly social personalities and an affinity for music.

WS affects 1 in 10,000 people worldwide – an estimated 20,000 to 30,000 people in the United States. It is known to occur equally in both males and females and in every culture.

Unlike disorders that can make connecting with your child difficult, children with WS tend to be social, friendly and endearing. They show no racial bias. Parents often say the joy and perspective a child with WS brings into their lives had been unimaginable.

But there are major struggles as well.  Many babies have life-threatening cardiovascular problems.  Children with WS need costly and ongoing medical care, and early interventions (such as speech or occupational therapy) that may not be covered by insurance or state funding.  As they grow, they struggle with things like spatial relations, numbers and abstract reasoning, which can make daily tasks a challenge. And as adults, most people with WS need supportive housing to live to their fullest potential. Many adults with WS contribute to their communities as volunteers or paid employees, for example working at senior homes and libraries or as store greeters or veterinary aides.  

Just as important are opportunities for social interaction. As people with WS mature – beyond the structure of school and family activities – they often experience intense isolation which can lead to depression.  They are extremely sociable and experience the normal need to connect with others; however people with Williams syndrome often don’t process nuanced social cues and this makes it difficult to form lasting relationships.

(http://www.williams-syndrome.org/what-is-williams-syndrome)

Williams Syndrome Awareness Week

Today is the beginning of Williams Syndrome Awareness week. In honor of this week, I am going to share the stories of other WS moms.

Unlike Peanut, not all WS babies are born with heart problems. The effects of Williams Syndrome vary with every child and those effects can range from mild to serious. Peanut obviously, has suffered serious heart defects but that is not always the case.

A blog friend and fellow WS mommy has a child whose effects of WS are quite mild. She chronicles his story here. She is much more motivated then I, when it comes to breast feeding. She has completely rearranged her diet to accommodate her 20 month old she fondly calls, Bean.

Due to his WS, he cannot tolerate certain foods and she has to be very careful about what she eats, as he receives it through her milk. Like many WS children, he has high blood pressure, intestinal issues, and feeding difficulties.

I appreciate her and other moms sharing their stories so I get a preview of what I can expect. Hopefully their stories will help others to understand Williams Syndrome and how life may be for little Peanut in the future.

To read more about WS Awareness Week, feel free to check out the Facebook page. 

The Talk

I'll be honest. This morning was not my favorite.

After rounds, the doctor sat me down to give me "The Talk."
Now, "The Talk" is when your child is sick and they want to be sure that you know that things could go south. That you need to prepare yourself for a rocky road, some bad news, and possibly make a very big decision.
"We're not giving up, we just don't know what to do to make him better."

Peanut is very sick. His heart isn't healthy, his lungs can't keep up, and now his liver is being affected. They aren't feeding him today because the TPN(IV nutrients), after a long period of time, can cause liver failure. You can already see signs of it: his numbers are out of whack and his skin is turning yellow because his liver can't process like normal. His hair is falling out (side effect, I'm told), they had to raise the ventilator pressure, he doesn't tolerate being awake, and his numbers drop when he's turned on his right side. His is having bloody secretions after his chest PT, which is when they pat him on the back to loosen up gunk in his lungs. He does have an infection, they just aren't sure what kind it is. He will be on antibiotics for at least 21 days to make sure it's gone.
Over all, they don't know what to do. They don't want to make it worse, but they don't know what will make it better. He obviously can't go into surgery when he is sick, the operation will kill him. We just have to wait and see how Peanut does.
Wait and pray.

So I knew this talk would come. I could tell by the way the doctor was looking at me that he was going to tell me there is a chance my child won't make it. That I need to make the decision, that in the event his heart stops beating, do I want them to try and save him or let his disease take its course.
I don't know the answer.
I don't know what I want them to do or how I feel about it. I am still processing this and still trying to figure out my feelings.
I'm not saying this is the end of the road. I'm not saying Peanut is on his death bed. I'm just saying there is a chance that he may not make it.
On the other hand, it may be that he is just sick and weak and having a lot of trouble right now. But that tomorrow he will suddenly perk up, his numbers will even out, and he will come out of it. He could very well show us how very strong and determined he is to make it. This isn't the end, this is just a very low point.
Right now, it's all up to Peanut and God. If it is his time, then we all need to at least hear the words: He may die.

So here I am. Praying.
He hasn't given up and neither should we.

I'll close with something I usually never look at or even take seriously: my horoscope.

You simply shouldn't take negative things seriously today. Any metaphorical stop signs, refusals, brick walls or red lights are not the end of the world. They are simply annoyances that you must ignore. Give things another try -- figure out a new route. Maybe there's something you haven't thought of? Chances are someone who's been down this road before has some excellent insight, so why don't you drop them an email and find out what advice they have for you?

Sunshine

You are my sunshine,
my only sunshine.

You make me happy,
when skies are grey.

You'll never know dear,
how much I love you.

So don't take,
my sunshine away.

I sang this to my sick child today...choking back tears. I couldn't help but think how appropriate it is. He will never know how much I love him...and how very much I don't want to lose him.

I love you baby, please don't leave me.

Monkey

So, I received Monkey's monkey hat in the mail the other day.

It's adorable :D

Thanks again to Camille of Knit Knack Hats, I love it!

(You can visit her blog here )