Monday, April 30, 2012

Two Weeks

Two weeks... went without tears for about two weeks. Last Monday we met with our Pastor to prepare, enough as we can, for Kendall's funeral service. Got like an outline for how many songs and verses we should come up with... and now every time I'm listening to 104.7 The Fish I'm thinking about which songs we want played. And today was the start back of tears starting to flow without warning.

A few weeks ago, a friend's daughter was baptized; so I had Kristen and her best friend sitting with us for the beginning of the service, since they knew the little girl getting baptized.... This song was playing...

How He Loves Us

...And when they got to the chorus, the girls would sing at the top of their lungs. I wish I would have recorded the two of them.Without a care in the world; two beautiful 4yos singing their hearts out for God.

Still trying to be joyful... just hard to plan for something like this.

Angel Shower

We have many wonderful friends supporting us and loving us. And to show us and our family how much they care about us and Kendall, they threw us an Angel Shower. (Thank you again!!) The best part for us was to show the rest of our family how much support we have. The picture is of one of my favorite cards for the shower.

What is an Angel Shower?
Once finding out about a child with a fatal diagnosis, a mother’s dream comes crashing down. A normal baby shower is not necessary needed any more. An Angel Shower is a way for friends and family to surround the grieving family with love. These family will need other things for their new journey in life.
An angel shower can still celebrate a child’s life within the womb. Decorations can be talked about with the mother, but can still be with lots or pink or blue. This is a type of shower where the mom will have to be a part of the planning. Her and her husband can put together a list of things they want for the baby: hats, outfits, picture props, etc., as well as gifts for the family: gift cards, meal sign ups, things for siblings.

Things monogrammed are nice for the baby. Gift cards are great for parents and other kids. Spa, nails, movie nights, food. Maybe to Shutterfly, to get prints made later. A craft store g/c for frames, shadow boxes, hand molds.

This is a good time to collect a bag of new small toys that younger children can play with at the hospital to keep busy. Coloring books, small figurines, stickers, a new stuffed animal that can remind them of their baby sister or brother.

Help celebrate this child’s life!

Need more info?

Friday, April 27, 2012

Second Cemetery Visit

The kids are at their grandparents today, so we went on our second visit to the cemetery. This time to make a choice on plots and get some ideas on markers (what we like and don't like). We reserved Kendall's and put a hold on two more beside her, for further discussion on when to buy ours as well. I doubt too many healthy 29 year olds go and pick out their plots. But it's part of the process and has to be done eventually. Better now, then after my surgery. Not too many people have time to plan. It has been something we've always thought about since making our will for the kids. And no one on my side of the family is buried in Georgia. Strange, knowing I'm born and raised here. Kirk's buried family is in Tucker, and we felt that was too far for us if we wanted to visit Kendall easily. Below are some pictures of the area. This is a newer portion of the large/full cemetery.

From the road, middle-front tree area to the right.
In front of the existing plots. Front, would be to the right side of the picture.
Below these plots, to the right of the picture. Kendall's neighbor above her would be "Fred", the single marker in the middle, without flowers. Ours would be under the two to the left of Fred. I think Fred's a pretty cool guy.

Thursday, April 26, 2012

Private Practice

"No, I usually don't watch Private Practice", is what I told a friend who asked me last night. She basically told me "good, you probably wouldn't want to right now." I wasn't intrigued to watch till I got home and the FB group on anencephaly was talking about the show. I so went online to watch it after reading some things online about it. I only watched the parts that had to do with the character Amelia. She found out her baby, as they said it, has no brain. And then showed some emotional parts of her journey to carry out her pregnancy. The actress is pregnant in real life. And I read that the finale of the show will be her baby being born.

I didn't get emotional watching it. I'm interested in what they do show and how real the character gets emotionally. I might watch some more as the weeks go by. But a 1 to 10 scale of the 10 that I have hit.. I think they showed a 4 so far. I'm sure they won't bring religion in the picture. The only reason she gave to carry out is organ donation. But they didn't say that the only organs these babies are allowed to give are heart valves.

It also seems to be her first child. They show the jealous side of her, as another doctor has a new baby. I haven't felt that way since I know I'm blessed with Kristen and Drew, but understand that I would defiantly feel that way if it were my first.

So if  any of you watch it... Yes, I know about it now. No, it doesn't bother me. I'm happy they are bringing awareness to anencephaly, even though I never heard the diagnosis name on the show (skipping around). And if I had never heard of it and was watching, I'm not sure what I'd think without the real phrase "anencephaly". Probably wouldn't completely think it was possible. Something made up by the show.

Anyway, we're doing fine. No harm here.

Tuesday, April 24, 2012

We have a date!

If we make it to June 20th, that will be Kendall's Birthday! First day of Summer, she doesn't want to be unlike her sister (9/6) and brother (8/18) and not have a Summer birthday. We have confirmation on a very early 6:45am (be there at 5am) time for my c-section, now it's time to start registering for the hospital. And we have a count down... maybe I'll make a ticker later... 57 days.

Wednesday, April 18, 2012

Uplifted Spirit!

I wanted to share happy news!! Since my last post, and maybe b/c of the Pastor's last sermon on a change of attitude, I've had a great two+ days. Pastor Bob told everyone to look at the person beside them and say that they needed an attitude change.... Kirk did so, and I said, "I probably do". In the back of my head I do wonder how long it will last, but I'm enjoying it while I have it!

From reading about others with anencephalic babies, their seems to be 7-8 young (under 3yo) kids living with this condition world wide. My prayers go to the Santasieri family today, as their little Katie lost her fight this morning. She lived a remarkable 9 months after birth.

Tuesday, April 17, 2012

Second Dream

I did have another dream last night, this time passed birth. I did dream again that Kendall was perfect, with no indication of dying. I realize that it's probably not natural for someone to dream about what will probably happen in our case, but it still gives me hope. But it also gave me the joy you feel right after you have a baby. And it gives me the hope, that no matter what happens in our case, that we will still have that joy. That no matter what she looks like or how long she is here, that joy and love will overcome anything. Even through our tears, she will be perfect in our eyes and will be perfect in Heaven, just the way I dream about her.

Oh, Happy Day! 

Thursday, April 12, 2012

Ultrasound Pictrues

Chubby Cheeks:

Best picture of her Anencephaly: She wouldn't let us go the whole way around her head. I hope to see her ear next time.

Chubby Legs and Feet:

Looks like she's sleeping... she wasn't, very active:

Tuesday, April 10, 2012

Song In The Car Today

A friend, not on FB, emailed today and I realized that the ones who don't know us on FB only get to read this blog and see our down side.  I probably don't give people the whole perspective on here. We do have happy moments, but I use it as a way to get my venting out. More like a confessional, then I can get over it faster. We have our maternity photo shoot on Saturday that I'm really excited about! And our first ever 3D ultrasound on Thursday, so I'll be posting more pictures soon.
"Praise You In This Storm"
I was sure by now
God You would have reached down
And wiped our tears away
Stepped in and saved the day
But once again, I say "Amen", and it's still raining

As the thunder rolls
I barely hear Your whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

And I'll praise You in this storm
And I will lift my hands
For You are who You are
No matter where I am
And every tear I've cried
You hold in Your hand
You never left my side
And though my heart is torn
I will praise You in this storm

I remember when
I stumbled in the wind
You heard my cry to you
And you raised me up again
My strength is almost gone
How can I carry on
If I can't find You

But as the thunder rolls
I barely hear You whisper through the rain
"I'm with you"
And as Your mercy falls
I raise my hands and praise the God who gives
And takes away

I lift my eyes unto the hills
Where does my help come from?
My help comes from the Lord
The Maker of Heaven and Earth

Added (off topic and on my soap box): Ok, I was reading again and led to share my feeling on songs that talk about raising our hands. Truthfully I don't always like singing them in church, but I love singing them at the same time. I don't think most people really realize what it symbolizes, so they don't feel it inside them to do it... and then when people on stage ask everyone to do it, I feel like it's fake. I was told in our youth group, I think by the singer Joel Engle (came to our church often), that raising our hands obviously was a symbol of reaching out and giving our all to God, sometimes a way to say "thank you". But what feeling does that provoke? Joel said it was something like you're a little kid and your daddy was walking in the door from a long day at work and with both hands raised out, running to Him, you want Him to reach out and to hold you tight. I don't always raise my hands, and half the time it's probably due to insecurities, but I know when I do it actually means something.

Sunday, April 8, 2012

Happy Easter

Thank you Kirk for letting me have this evening alone while you go to your parents.

Going into today I was feeling a little bitter. I wasn't sure how I was going to hold on today. I haven't cried too much in the past week. Spring Break, kids 24/7, keeping myself busy moving Drew to his "big boy room" and getting a sinus infection in my throat. I've started to tear here and there, but it wasn't a good time to let it all out. 

Easter: Jesus was sent here to die for our sins. [... died and rose on the third day, so we may be forgiven and spend our eternity in Heaven]

Thoughts in my head prior to this week: Mary was sent an Angel, where's my angel? Jesus knew he was sent to die, but he also had a hard time accepting this. But Jesus at least lived a life. I feel Mary and God's grief for His child, but God gets to see Jesus. Jesus got to return. There was a purpose. But everyone knew this purpose. What's Kendall's purpose? I want to be that woman in the Bible who touched Jesus' garment in the crowd and He turned to her to help her or Kendall to be the 12yo he brings back to life in the same passage. (Mark 5:21-43) "Don't be afraid; just believe (v.36)."

People have already said that Kendall's life/story, has already touched them, changed them, made them a stronger Christian. And I love hearing that. But my truly, my selfish side says, "Lord, is my child sent here to die just to help us (parents, family, friends, strangers) be closer to you?" As much as I know that I want to be closer to God, my heart screams, "I want my baby!" "I WANT MY BABY!"

I mentioned in the Desperate Housewives post that I had started journaling to my kids before Kristen was conceived. Today Pastor Bob's message started out with him telling a story on a duck laying eggs in his yard. This is my journal from July 12, 2006:

"We had a duck under our deck for the past month, who laid about 16 eggs. She has been sitting there and I cared for her when I could. It was so cute. The eggs hatched in the past 24 hours. Your dad (Kirk) got to stay home on vacation so he took a picture and sent it to me at work. I got so excited. I felt like a proud mamma and couldn’t wait to come home to see them. Well, once I got home, they were down at the lake and since then I haven’t been able to see them. I’m sad (understatement). I hope they come back. I feel like I lost something.  I have a longing for babies…. Of any type"

I did cry that night. I feel a little stupid for admitting that to the world. I had protected that duck and her babies from snakes getting her eggs, and gave her bread and water so she didn't have to go all the way to the lake away from her nest. We weren't ready to have kids yet, but we were getting close, and the longing for children was strong... so I almost felt connect to those babies.

I forget (and will look up once posted) how Pastor Bob was connecting that to today's message. But there was a point where he was saying that we will all experience death, eventually our own. He started out at a ripe age 80+ and went down to 5yo. Kendall will be lucky to have 5 hours....

Grief sucks. Sorry mom, I know you don't like that word, but there isn't a nicer one to use.

7 stages:
1) Shock and/or Denial- My shock lasted a good day before my "mom" mode kicked in to cope. Writing this blog helps me. Sometimes now that it's been 8 weeks, I think, "Is this a bad joke?"
2) Pain and Guilt- I'm not sure I have too much guilt, but I know the pain is strong and will last a lifetime. 
3) Anger and Bargaining- Anger, I've blogged about, and try to get over quickly. Bargaining seems to be creeping in. "Is there anything I can give!?"
4) Depression, Reflection and Loneliness- I hope not, sure- I know there will be more, and not too much yet. 
5) Upward Turn- after death
6) Working Through- after death
7) Acceptance and Hope- after death

I haven't lost her yet, but have already hit 4 of the 7... It may be "healing" but I don't like it. I think everyone knows me as, happy, easy going, go with the flow, make others smile, listen to other people's problems Stephanie. That's who I want to be, but that's not who I am right now. And that hurts in itself. I haven't had that much Bible time lately, as I've been doing a lot of reading for Kendall/hospital literature (excuses, I know). I feel like the grieving process and the pain is having a battle within my head of God and Satan. I don't want to feel pain, anger, completely scared of depression...

Done blogging what I had on my mind, going to spend time in the word to finish it off... First thing I turned to was Luke's account of the last moments of Jesus on Earth...

Luke 22:46 "...pray that you will not fall into temptation."
I need that prayer. Prayer for my hurt and pain not to turn to hatred. Or something else that Satan wants it to be, which is not me. 

I've almost come to acceptance that Kendall will die. Planning for the hospital and funeral. But I still pray and believe (Mark 5:36) that she can be healed. Probably the only hope that gives me strength for the next day.

We have our first 3D ultrasound this Thursday, to see how sever her head is. Pray 1) she's in a good spot to see. 2) That the impossible is possible.

Now that I've sat here a couple  few (3) hours writing this, crying, reading my Bible... time to do the house work that I told Kirk I would do while they were gone...

Update: July 19, 2012- These last three stages, looking back, did happen before Kendall was born. Maybe not a consistent climb up an “upward turn“, but think of it as a graph that goes up and down. “Working Through” is always and from when we found out. “Acceptance” came in two waves. 1) Surrender all to God. 2) After death. But that was easier than I‘d think. “Hope”… hope was for her to be healed. Then we lost her. I lost hope. I blog about this later. Hope was renewed in a different way.