Comic relief

Sunday morning, as I finished getting ready for church, Glory (she-devil-puppy) ran by with something in her mouth. I chased her, and got the item out of her mouth. I complained about her as I walked back into the bathroom. I grabbed my hairspray and turned to explain to Jeff what the dog did as I sprayed.

The problem was I had 2 cans on my sink.

Guess which one ended up in my hair?




Yep! Kaboom foamtastic, sprays on blue and turns white when it's done.

Me, with a blue head 10 minutes before I was supposed to walk out of the door. I panicked because I didn't know if it had bleach in it. I ran to the sink and sprayed my hair down. Dried it well, completely relieved it wasn't yellow. I went to church looking like...well, I guess looking like my head had just been sprayed with toilet bowl cleaner.

It really was funny, but I've got to pay attention to what I'm doing. That is incredibly difficult when that puppy is running around. She's like a chewing, four legged, terror toddler. Then, at least once a day, she gets really sweet and cuddles up. What's a girl to do?

Glory's last two days also included:

Eating my shoe.




Getting tangled in the Christmas tree lights. Thank God she didn't run!




Pulling Sarah's painting off her desk, walking through it, and then all over the bed.








That dog is trouble, I tell ya. T-R-O-U-B-L-E!

She's also some much needed comic relief sometimes.


 

Thanksgiving

Thanks so much for the thoughts and prayers over the Thanksgiving holiday. I recieved messages, texts, and comments telling me that you were thinking of us and Abby.  I appreciate it so much!

So, I did it! I made it through my first Thanksgiving without my girl. I've missed her so much, and if I let myself think of it, I was very sad and had tears, but otherwise, it was ok.

At dinner, I lit a single candle as I remembered my baby.

The only table decoration.  A light for Abby.

I tried to think of her all the years she loved it, and not last year when she felt so sick. 

The girls at Seaworld when they were little!

My mom spent the week here, and my sister and her family came for the holiday. It was great to have family around.

My mom and my neice

It's a huge adjustment to a new way of life here. The biggest change is noise. We had to be quiet around Abby. She was legally blind, but very sensitive to sound. The last 6 months, any noise at all bothered her a lot. We were as quiet as we could be. Before that, we just tried not to bother her, and sound did.

Nearly 15 years of quiet is a tough habit to break. Everyone here seemed massively loud to me. I kept shh-ing everyone. My sister said they weren't really loud, I'm just used to quiet. I think it's a bit of both. They are loud (or maybe loud is a normal that I've never had), but we are library quality quiet. I really tried to stop the shhh. Emily doesn't mind the noise, so I need to get used to a new normal.

It's such a small thing, but a huge reminder of how different my life is.

Hannah and Sarah

I thought I had a better picture of Emily and Daddy, but it turns out that this is it. 
 

I tried to get pictures, but between my nieces, sister, and daughters, someone's hair wasn't done at all times. :/. They didn't love my camera, but it was nice to have cousins playing together. 

One thing we all did love was the food. This is why Abby loved it, and why I do.

We are blessed indeed!

Thinking Thanks

I'm sitting here wondering how to feel as completely grateful, thankful, and blessed as I know I am.

I have 3 beautiful children, a husband who loves me, a stable, safe home, food, family, and lots of love in my life, and most importantly a relationship with Jesus, the one who has my child in His arms.

I don't want losing Abby to define us. I want having and knowing her to define us.

I want to be grateful for her life. For every second we had her and what she still means to our family. I just wish I could take a deep breath without the pain of her absence filling me.

She loved Thanksgiving. The cooking, planning, and shopping are right up her alley. That excited squeal is missing. Those little fingers that worked so hard to pour, measure, and if she could manage to catch you with your back turned, knock over the bowl and anything in it. That was her favorite. She would laugh at the mess she made, and us.

Then there's this awful guilty part that recognizes how much easier it is. I can get a lot done, but I feel silly for having wanted that.

I'm going to do my best to have an attitude of gratefulness because I am. This is a year of transition, but I feel blessed for what we do have, and as much as I miss my daughter, I am thankful she isn't suffering. Last year she was so sick that she didn't enjoy it like she did before. That broke my heart too. At least she feels perfect where she is.

I love that line. Gratitude turns what we have into enough. What's incredible is that it also turns what's missing into enough too.





Happy Thanksgiving!

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Stores

I can't remember if I told this story before, but if I have, this is take two.

Hannah was 5 when Emily and Abby were born. Having them so far apart meant that Hannah would be in the first grade before the twins could theoretically even take first steps. They weren't exactly going to play with the same toys. At that time, I loved this Little Tykes seesaw. I wanted it for Hannah, but that didn't make much sense. When I found out I was having twins, this was the picture in my mind. Them, as toddlers playing on their little alligator seesaw. It seemed like so much fun, I simply could not wait!






Then they were born early, and everything started to change. I still held on to that picture. It wasn't the fun play thing it had been, but a desperate hope for their future. A daily prayer.

When they were about two, I finally realized and began to accept that my babies wouldn't sit up, and would never own or play on that little alligator toy. I tried to completely forget about it. If it didn't exist, it couldn't hurt.



As all good denial attempts usually do, that bubble popped. I walked into Toys R Us one day, and saw it. The dream. I sat on the floor beside the display and cried. I rocked that little guy back and forth and tried to imagine the girls on it. I couldn't. It was gone, and I cried a little more.

Yesterday, that all flooded back as I saw this in Target.




I almost turned around to show it to Abby, as I knew she would smile. She likes silly things. I remembered she was gone. My eyes immediately flooded with tears. Having had experience with break downs over goofy items in stores, I knew I had to move on quickly (I didn't even stop to take this picture, it's from the Internet). Surprisingly, I've grown a little over the years, and managed to walk through the rest of the Christmas section with only a few quiet tears.

I did buy this ornament because I thought of her when I saw it.




I had a tiny inkling that Christmas would be tough, but I didn't realize how much it would hurt. Their CP was nothing compared to her absence. I miss that kid. She loved to cook, and shop for Christmas, and wrap presents, and decorate the tree, and go to church, and tear those presents open with her little hands. How in the world will I live without that?



I love this picture of Abby at the tree. The wonder in her eyes makes me smile.



Abby concentrating on opening a present 2 years ago. It's amazing to me to see her so healthy, and to know that less than 2 months after this was taken she would be so sick in the hospital.

I really want to talk about other things, but she is still so important, and such a huge part of our lives. Even grieving her. I don't know how else to handle it, other than walking through it, and writing it out. It's my therapy. :)


 

Home

We came home today! It was a huge unexpected surprise!

Emily did well, but was very tired. Overall, we got a lot of good information, and mostly good news!

The staring episodes we thought were seizures didn't appear to be. She had some activity at night, and a few other things, but overall, her little brain looked healthy! That is SUCH good news. We haven't had better than expected news in a really, really long time. Thank you God!

We aren't going to mess with her meds right now. We'll see how many seizures she has now that we have a clearer picture of what they look like.

I'm thrilled to be out so soon. The kids are home from school tomorrow, so we have a day to relax and regroup.

We spent the evening picking the EKG glue out of her hair. I sent Jeff to the store for a fine tooth comb, and had to laugh when he came home with this from the pet isle.




At least it worked!


 

Doing fine!

Just a little note to say we're doing alright. It's completely different being here with a child who isn't sick. Emily feels fine, just bored. She's all hooked up, and itchy. I scratched my head as I wrote that.



She had a really hard time with the glue they used to hold the electrodes in place. She gagged and wretched the entire time they were putting them on. I felt so bad for her. When it was done, she was ready for breakfast :)

She did one of the things I thought might be seizure activity yesterday. I hit the button they gave me, and oh my!! The tv flipped off, a giant light came on, the door flew open and an alarm sounded! Scared the living kasnoodle of of Emily and me. Holy cow! We were just waiting for bars to fly down and lock us in. Seriously, that might scare seizures out of folks (maybe even me).

The good news is after we could breathe again, it actually wasn't a seizure! Praise God! Because some of her seizures are subtle, I'm not sure what is and isn't one. I didn't even think she was having them in the first place, so what do I know. Anyway, one less thing to worry about. She's also maintained her O2 sats, which I was concerned about. All in all, good news!

Check out that bed head!



I'm still hoping to go home Monday, so I hope they are able to capture what is seizures. It's hard being here, and Emily and I are talking about Abby a lot. Emily asked about her on the computer, which is a first. I think because she thinks of her being in the hospital. It's been nice to talk about her. Emily says she thinks of her everyday.



Me too :)


 

Emily

Emily is being admitted to the hospital tomorrow morning for an inpatient EEG. We will be there any where from 3-7 days. Of course I'm hoping for 3, which means I need everyone to pray for seizures. That is a very strange sentence, but it's what we need. I also need her to do the things that we think could be seizures, so we know what's going on. We will be adjusting meds at that time too.

I'm not looking forward to being back in the hospital. Maybe even a little bit more than that. I'm dreading it. We won't be on the same unit as we were with Abby, and Emily shouldn't be exposed to sick people, but it's still hard. I've been tearing up today, as I think of all Abby went through and how much I miss her.

"Miss" is such a tiny word for the absence of her in my life. She was such a challenge, even healthy, that I was often focused on being up to my neck with issues as I tried to help her. She had such a strong personality, and endless energy...I struggled to keep up with her. I miss that energy, which is nuts, because that's what I never knew what to do with.

I really miss her sweetness. The feel of her in my arms, and those sweet licky kisses. The way she laughed is a sound that still brings a smile to my face and a tear to my eye. I realize now how often I grouped the twins together. From the beginning, they were a set to me. Now, I see clearly how different they are. Abby...I can't come up with words for what she was to me. I just miss her.

We visited her grave this weekend, because Sunday was the 2 month mark of this awful first year we have to get through.  Two months seems like a long time to me.  It's hard to believe I haven't seen her in so long.

There was still snow on the ground, but it was a beautiful day. We walked the dogs, sat quietly, talked, and left fresh flowers. I love being there.

I've been thinking about a headstone, and what it should look like or say. It's really tough, because it will never be enough. I look at all the gravestones in the cemetery and wonder about the people. Who were they? One said the name and dates and "see ya". I like it, it made me smile a little thinking of that guy. So, I wonder what few words would describe Abby. I'm not sure. There is a huge void where she should be.  I really can't write "your family is forever in the abyss of loneliness without you".  "Gone but not forgotten" doesn't touch what she meant to us.  I'm looking through poems (Emerson, Dickinson, Keller)  for a single line that encompasses her and us without her.  So far, Winnie the Pooh wins.

    Here are pictures from our weekend. 

 

Politics

I planned to write sooner, but got a nasty cold.  It was just enough to make me whiny and miserable, but otherwise not so bad.  I can't remember the last time I was sick and could just go to bed.  It's pretty amazing what rest and lots of fluids will do for a cold. I was feeling much better. 

Until I woke up this morning to the election results.  My headache came right back. 

I kept my mouth shut on facebook, but this is my blog, so I figure I can complain a little here.  I have no desire to be hateful, but that doesn't mean that I don't have a voice and a right to use it. I'm not sure when an opinion different from our own became "hate speech".

I started the day ranting about our divided country simply needing to divide right down the middle.  Why should we have to fight with each other?  I shouldn't have to support what's against what I believe about government and family, and neither should you.  Let's just be friendly neighbors.  lol.  I've settled down a bit :)

Obviously, I am not and Obama supporter, but it's not just him that I don't like.  Honestly, it doesn't matter who the president is, when the minds and hearts of the people are willing to support what they apparently are.  I still believe that morality can't be legalized, because it will always be a matter of the heart between an individual and God.  However, that relationship should be evident in the choices we make in daily life, including politics.

A scenario doesn't exist that would cause me to get behind an administration that supports abortion, when everyday I read about the genocide of special needs children.  Let me just say, it is statistically impossible to Christian families not to be a part of this problem.  80% of babies pre-birth diagnosed with Down Syndrome are aborted in this country...with government backing.  I can't stand knowing our tax money pays for that.  There are many other issues, but none as close to my heart as that one.  Every child is fearfully and wonderfully made.  I can't imagine having never known Abby.  All that she taught me about life would be lost.  Everything that God had for me to be through her and with her would be gone.
 
We, as a people, are on a slippery slope.  Our country jumped on it willingly, and I believe God will not continue to stand with us as we mock His law with each election. 

That being said, this is how I voted (I took this from a friend on Facebook, but agree completely).

How did I vote?

1. I voted for the most pro-life candidate, because God hates the shedding of innocent blood (Prov.6:17).
2. I voted for the most pro-Israel candidate, because God blesses those who bless Israel & curses those who don't (Gen.12:3).
3. I voted for the most pro-marriage candidate, because God is for marriage as defined in Genesis 2:24.
4. I voted for the candidate who most closely believes in religious freedom. God has given the government certain duties, but enforcing a particular system of worship is not among them (Romans 13).
5. I voted for the candidate who most closely believes government's purpose is to reward the good & punish the evil (Romans 13).
6. I voted for the most pro-debt reduction candidate, because the borrower is servant to the lender (Prov.22:7).
7. I voted for the most pro-work candidate because God says if a man does not work, let him not eat (2Thess.3:10).

Finally, I voted based as close as I could on God's Word (2Tim.3:16). Knowing that whoever gets elected, God is the one who puts all men in authority (Dan.2:21).

We must just continue to pray for our country.  Having read Jeremiah recently, I know that God grieves as His people turn their back on His law. 

The Lord said, “It is because they have forsaken my law, which I set before them; they have not obeyed me or followed my law.  Instead, they have followed the stubbornness of their hearts; they have followed the Baals, as their ancestors taught them.”  Jeremiah 19:13-14 (niv)

The last day (part 3)

When it was time to close the casket, I was dreading it. I wanted a few minutes with her alone, but quickly realized it wasn't going to happen.

Sarah was having a really hard time with it. Everyone left, except Jeff, Hannah, Sarah, and me.

We prayed together and for Abby. As we said "amen", Sarah lost it.

She cried, and begged us not to close the casket. I felt the same way, but had to keep it together. She grabbed it and wouldn't let go.

We told her over and over that Abby was gone, and this wasn't her anymore. She wouldn't accept that.

I'd been told that children have a difficult time separating the physical from the spiritual, and that was definitely true there.  Sarah cried over and over "this is the Abby I know, THIS is who I want!"

She screamed what I wanted to scream.  She clung to her the way I wish I could have.  She, as a child, did what I wanted to do.  I wanted to keep her with us too.  I wanted to be able to hold the girl I knew too.  I put my hand on her chest for another minute.  I had to be absolutely sure that it was real. 

Abby was so strong, that even as hours passed, I still had to be sure that she was really gone.  If anyone would just start breathing again, I thought it would be her.  She always did what we didn't expect.  Why not now? 

Of course, she was in Heaven, and we had to say goodbye to her body. 

20 or 30 minutes of Sarah wailing and holding on to the casket went by.  I finally realized it wasn't helping her anymore.  Daddy gave Abby the traditional last kiss, and I gently but firmly told Sarah that she could close the casket or I would. 

She said she would and then did.  As soon as it closed she screamed "that's my baby...that's my Abby...noooo" 

My heart broke as it silently screamed the same.

That was my baby.  The child I couldn't wait to have.  And she was gone now. 

I took Sarah's hand as her other one stretched toward her sister.  We walked out. 

As we followed the hearse to the cemetery, every time the car slowed down, Sarah cried and begged us not to be there yet.  I was really worried about what she would do when we were there.  I gave her the option of staying in the van and not coming with us, but she chose to get out. 

All the men in the family helped carry the casket to the grave.  It was a very informal, but beautiful time.  Many family members spoke of Abby and what she meant to us.  Jeff's great grandmother prayed and sang a hymn, which we all joined in for.  We placed roses on her casket, and then it was time to bury her. 

 

Sarah did well through that part. 

Then some family left, and some went through the cemetery, as they are all family members.  Jeff walked Hannah and Sarah down the mountain. 

I couldn't leave her yet.  I stood by myself for a few minutes, with my hand on that white box that held my child.  I thought of that silly rectangle, that now had the job my arms did for so many years; holding that sweet girl.  Again, I wished it had been different. 

I sat on the wet ground, out of the way as they lowered her.  I watched as the dirt covered her.  Jeff and the girls came  back just as they were sodding.  Sarah and Hannah were really sad, but okay.  They helped spread the grass seed, we put more flowers down, then Sarah placed the small marker from the funeral home in the ground.

It was time to leave.  I finally felt that we did all we could for her.  Until that very second, I couldn't imagine not being with her.  As I walked down the mountain, my thoughts turned to Emily and what came next. 

When we got in the van Sarah said "I can't believe you would leave her on the first day she died".  That was like a knife to the heart.  Sarah wanted to spend the night in the mountains and visit the grave in the morning.  I needed to get back to Emily. 

I explained again that we did everything we could for Abby, and now I had to care for Emily.  I think Sarah understood, but it was hard for all of us. 

There are really good and bad things about how quickly we buried Abby.  I'm extremely grateful we never had to leave her.  I'm glad we didn't embalm or do anything that felt unnatural to me.  I love how we were able to care for every aspect of her life and death.  It was perfect for who she was.  The down side of everything moving so quickly was that it didn't feel real.  She was buried 14 hours after she died, and it felt like walking through an awful dream.  We were exhausted and I kept saying over and over that I couldn't believe it happened.  There was no time to process. 

That was good and bad.  We just had to get through it, and then plan the memorial service, which I took my time with. 

Sarah has done remarkably well since then.  As hard as that day was for her, it seems she really grieved.  Openly and completely.  She had the space to deal with it honestly, and participate as much as she wanted to.  Hannah did too.  I think it was harder for Hannah long term, but that day, it was Sarah.  The next day was all about Emily handling it. 

I felt extraordinary peace that day, which I know only comes from God.  I was extremely grateful that it all worked out exactly how we hoped it would have.  If she had passed away in the afternoon or evening, we would have had to leave her at the funeral home overnight.  I know that's a normal thing to do, but it wasn't what we wanted.  I'm thankful it worked out for us. 

I also felt extraordinary sadness, that will always be with me in some form, for my children who lost a sister, grandparents who grieved their grandchild, my husband who buried his daughter, our families that would miss her forever, and a world that was a little darker, never again to be lit by an amazing light we named Abigail Grace.