The House of Doo

The House of Doo

Thursday, October 22, 2015


This song is so appropriate. Thanks, Gavin Degraw.

"Where did all the people go?
They got scared when the lights went low.
I'll get you through it nice and slow,
When the world's spinning out of control.

Afraid of what they might lose
Might get scraped or they might get bruised.
You could beg them, what's the use?
That's why it's called a moment of truth

I'll get it if you need it,
I'll search if you don't see it,
You're thirsty, I'll be rain,
You get hurt, I'll take your pain.

I know you don't believe it,
But I said it and I still mean it,
When you heard what I told you,
When you get worried I'll be your soldier.

Funny when times get hard,
At the last moment when you're supposed to charge,
Always on the longest yard,
Oh, they feel their feet getting cold.

Hiding here, hiding there,
Find them underneath the stairs,
People hiding everywhere,
Trying to be still like a stone.

I'll get it if you need it,
I'll search if you can't see it,
You're thirsty, I'll be rain,
You get hurt, I'll take your pain.

I know you don't believe it,
But I said it and I still mean it,
When you heard what I told you,
When you get worried I'll be your soldier."

I just wanted to tell you all that we are doing okay. It still hurts. I still hurt physically. The physical healing is harder than I was imagining. I am really struggling with anxiety and I feel the beginnings of PPD. I really struggled with this after Colt, but found little help. I refuse to get by on my own this time, but I also have a new doctor this time. We cry, but we can talk about Collins now without crying every time. Colt talks about her a lot. He wakes up crying in the night some and when I ask him what is wrong, he just says he is sad. I don't know if he's dreaming about her or what, he won't say. He is so very sensitive, I know it's going to take a long time for him.

This song I posted above fits so perfectly for this time in our lives. Our loved ones are incredible. Last night a precious friend gave me this beautiful necklace, cooked dinner for us and entertained us, then sent us home with homemade pumpkin bread.

When we got home, there was a huge box of homemade cookies and a sweet note on our porch. Every day there are cards in the mail. Every day there is a text or a call from a friend, or a message on Facebook. A sweet friend looked up blogs on second trimester pregnancy loss to try to understand how I was feeling. So thoughtful. We appreciate these things more than we can say. Thank you.

Wednesday, October 14, 2015


My last blog post, I shared some happy news - we were pregnant with a baby girl named Collins. Today, I have to say that our sweet Collins is going to live out her days in Heaven.

One week ago, I went in for a regular checkup. I was in my second trimester and wasn't worried about a thing. While doing the usual Doppler check of the heartbeat, my whole world crashed around me. Baby Collins' heartbeat stopped. I heard her very last heartbeat. The nurse tried to assure me she was "just squirmy" and we were just losing the heartbeat with the Doppler. My doctor came in and tried to find it, but it wasn't there. Two ultrasounds later, it was still not there. I had literally listened as my baby girl's heart beat for the last time. I cannot even explain the feelings that caused.

Here we are, a week later. Ryan, Colt, and I are at the beach for Colt's fall break. Our first vacation alone ever. Funny how that worked out - this was not our original destination  (Disney) or our originally planned week. It just happened to fall right after the worst week of my life. I am trying to enjoy myself - and I am, in spurts - but it is hard.

I have all of the typical postpartum feelings, and then some. I have your typical post-baby body, but no baby to show for it. I hurt physically and emotionally. Ryan hurts. Colt hurts. Colt is angry and aggressive, particularly with me. I failed him. He doesn't understand that I didn't choose this.

People can't warn you for what you feel after you lose your baby. Everyone feels it differently. No one wants to talk about it. No one wants to admit to the self-loathing that you feel. The anger. The grief. The complete sadness. The exhaustion. The never-ending tears. The guilt. The guilt you feel when you find yourself smiling, because you will. Then you will hate yourself for it.

I am trying not to feel guilty. I am crying, a lot. I am angry and short-tempered, and emotional. I am mad at people who weren't there for me, but trying to understand they probably have no idea what to say. I am also infinitely grateful for those that were there. The ones that sat at my table or on my couch and let me cry. The ones that were there (even before me) when I showed up at the hospital to have surgery, the ones there when I came back - empty. The ones that took Colt to school, home from school, fed him and played with him when I couldn't even do it for myself. The ones that brought food, flowers, toys for Colt. People will show up  when you need them.

Anyway. I am sharing this because no one ever does. It happens a lot more than we want to think. October is Pregnancy and Infant Loss Awareness Month. Here is my feeble attempt to shed some light on it. It hurts. Ask for help. I am. I need help. I need support. And that's okay.

Tuesday, October 6, 2015

I'm Back!!

I have been itching to update my blog lately and when I finally pulled it up to get started, I realized that I haven't posted since March! It is now October! I am so far behind! If I updated everything, this would be a REALLY long post, so I will try to keep it to the basics.

Colt finished up at Siskin and we miss it a lot. However, he started Pre-K in August! He loves it most days, but we are struggling with his behavior. He is in a "typical" classroom of 23 kids. That's a HUGE difference from Siskin so I expected some adjustment time. We are almost two months in now and it is still a problem. We'll hopefully get things under control soon. They have called in a behavior specialist to help come up with a behavior plan to see if things will change. Here's hoping.

Around the same time Colt started school, we found out we were pregnant. Colt was less than thrilled, but he seems to be coming around. When we found out the baby is a girl, he got more excited. I think it will be a huge adjustment (of course!) but I think Colt will be a fantastic big brother.

Some other things have changed for Colt, too. Some time this summer, Colt had his third MRI to check his brain damage. The MRI showed the damage had cleared up - seemingly on it's own. Everyone seemed so thrilled! I didn't share on the blog because, to be honest, I was very frustrated by that. Let me TRY to explain. For 4 1/2 years, Colt has been different than the other kids. He has "significant developmental delay", nystagmus, strabismus, amblyopia, he didn't talk until he was well over 3, he has hypotonia, he has macrocephaly, he has right-side body weakness (stroke-like symptoms), and he gets speech, physical therapy, and occupational therapy every week. He has some severe sensory issues and is being evaluated for high-functioning autism. When we knew that he had this brain damage, it EXPLAINED these symptoms and their connection to one another. Now, the MRI is clear and yet, he still has all of these symptoms. So if the brain damage didn't cause these things, WHAT DID?!?

I have struggled with this for months, but you know what? I think it's justified. As of the past few weeks, we have noticed another thing. Colt is having what we (and his neurologist) believe are mini-seizures, also called absence seizures. They look a lot like daydreaming but for about 20 seconds, he is totally unresponsive. When it's over, he looks pretty confused for a few seconds, then carries on with what he was doing when it started. We started to really get worried last week when it happened in the middle of a restaurant during dinner. It happened again the next morning when I was trying to get him out of the car at school. Ryan and I decided it was time to call the neurologist. We called him and left a message with his nurse on Wednesday. We didn't hear anything until Friday evening when the nurse called and said our neurologist wanted Colt in his office at 8 Monday morning. Yesterday was the day. The doctor thinks they are definitely mini-seizures, but we have to confirm them with an EEG that is scheduled for November 9. It will be at the hospital and last about an hour. If the seizures don't show up there, we will have a 48 hour "take home" EEG after that. The neurologist says that if they are to the point of interrupting his dinner, he would be confident enough to go ahead and put him on medication now, but the EEG will help us know exactly what is going on.

He talked to us for a long time. He feels like we are not to the bottom of the Great Colt Mystery yet. He says the MRI wasn't a huge success because every single day, an MRI will look different. Seems kind of pointless to keep doing them to me, then. Anyway, he says he still believes there is an underlying problem that we haven't found yet. He says that the older Colt gets, it manifests in a different "symptom" and maybe as he gets older, we will have enough pieces of the puzzle to figure it out. He says it could be genetic or it could be a brain structure issue. This is why I am frustrated - the second MRI did show a brain issue and we thought we had our cause, now it's gone and the symptoms remain - and keep coming.

So, I have been struggling lately. I just want to know what is going on with my boy. I want to understand. I hate all the doctors, I hate all the testing, I hate the constant "study" of him and the evaluations and the questions and the stares when he melts down in public, but I want to understand him. I want him to have someone (two, with Ryan) that "get it" and that can support him. I want him to know we don't think he's weird, that's he's special and fantastic the way he is. It all sucks, but the evaluations help him get the services that he needs to have a successful life. So that's where we stand now.

Also, knowing it could be genetic scares me for our baby girl. Sure, it isn't anything horrible and it could be so much worse, but it has been a long road for Colt. It's a lot of doctors, a lot of tests, a lot of surgeries, a lot of therapies, a lot of evaluations, and some days are just too much. I don't want her to have to go through it, too.

By the way, her name is Collins Everly and she is due April 6, 2016.