The last day (part 2)

Jeff called his mom and family around 4:30 am. We planned to keep Abby at home for a few hours for any family that wanted to see her.

I took a shower and got dressed for the day. Throughout that time, Jeff and I took turns staying with Abby. She looked very peaceful. It was a quiet, reverent, and very calm time for us.

I know the way we kept her isn't for everyone, but we had never left Abby before, and I couldn't imagine doing it then. I didn't want to hand her over to be handled by strangers. Knowing I didn't have to was a blessing.

Around 6 am, we started making phone calls. Then I woke Sarah up. The first thing out of her mouth was "is Abby alright?".

I told her she went to Heaven last night. She cried and needed a few minutes alone.

We had already prepared her for Abby dying at home. She knew she would be in her bed, and we would take her to the funeral home ourselves. Hospice had advised us to follow her lead. If she wanted to see her, that was fine. If not, that was okay too.

She wanted to see her, so we brought her in. She cried and got up in the bed with her. Emily cried at that moment, and I asked Sarah if she was okay alone so I could check on Em. She was, so I left and settled Emily. I came back in to see Sarah opening Abby's eyes and examining her, for lack of a better term. Surprised, I asked her if she needed a few minutes alone with her, which she did.

Children are very literal, and she physically needed to understand that Abby was gone. I definitely didn't expect that, but I wanted to give her space to do what she needed to, like I had been told. I think it was important for her to have that time. It helped her to begin to process this awful time.

Emily's nurse came, because we knew Emily wouldn't do well at the burial. We told her the next day. Jeff's family arrived and they each had time with Abby.

Right before we left to take Her to the funeral home, we called Hannah. She was heartbroken, of course. Jeff's sister picked her up to bring her to the mountains.

I'm sharing the following part of the story, knowing that it isn't what's normally done, but it was right for us, and may be for others too. I didn't know what we could do legally, so we made a lot of phone calls and eventually developed a plan that honored who Abby was, and what we were as a family.

When we began to talk about what we wanted after Abby passed away (months before she died), I realized that certain parts of the after death process were important to each of us.

I had worked as a nurse and done after death care several times. I knew I wanted to wash and dress her for the last time. She was my daughter, whom I'd dressed countless times in her life. I knew I would be gentle with her, and it would be more than a job. For the last time, I kissed her little fingers and brushed her hair. Her body was still very warm, but her hands were getting cold. I was very afraid of that. I didn't know if I could handle seeing her body change, but I did okay.

Jeff didn't want to do that part, but he didn't want someone from the funeral home to take her out of our home. His mom felt strongly about staying with her too. I didn't want to transport her anywhere. We learned that in North Carolina, we could take her to the funeral home ourselves. We originally thought we would take her to our local funeral home, and they would take her to the mountains. As the months unfolded, Jeff and his mom decided they could take her straight there themselves. I'll be honest, that didn't appeal to me at all, but I did like the idea of someone staying with her at all times.

That led to the pre-purchase of a casket. Jeff didn't want to drive her there outside of it. I know that's really weird, but it worked. I carried Abby out of the house and gently laid her in the casket in the van. Jeff, grandma, and grandpa left with her. Sarah and I followed in their car. The three hour drive was surprisingly calm. We arrived at the funeral home, where they took her out of our van. They were very respectful, and had been expecting us.

Because Abby passed away at night, they were able to dig her grave that morning, so it was ready when we got there. They placed her in a chapel, where we opened the casket and spent more time with her. Hannah, and other family members came. Jeff's mom stayed with her while we finally grabbed something to eat and fed Sarah.

When we came back, the baclofen pump rep came to turn off he pump. That was very important, as that pump has a 5-7 year battery. It would have been awful to imagine it alarming for years. It's very noninvasive to turn it off, just a magnet over the skin.

Hannah and Sarah picked wild flowers outside and put them in Abby's hand and Queen Anne's Lace in her hair. They placed items in the casket with her.
We wrapped her in the quilt her great grandmother made for her when she was a baby. I have an identical one for Emily.




We spent the day with her, never leaving her without a family member beside her. I'm not sure why that mattered so much to me, but it did.

Around 3pm, it was time to go to the graveyard....

final part of the story coming soon


 

The last night (part1)

This is what happened the last night I had Abby. For you, and for me.

I knew that her breathing had changed that day, but that had happened several times over the past few days.

I took her to her room, where all of us spent time with her again. Everyone really thought it was her last night.

Around 9pm, her breathing changed again, becoming more regular and less labored. Her temperature was very high still, and I gave Tylenol around that time. I began to think she would make it through another night. I was exhausted from the long, emotional days and nights. I was terrified of her actually dying, and yet I couldn't stand her suffering.

Around 11, everything was the same as it had been every night, so I decided we should all try to get some rest. I settled in beside Abby, wrote a quick blog, and then put my arms around my child. She was so hot, and very thin, so I didn't want put the weight of my arms on her. I had one under her pillow, and my head next to hers on the same pillow. My other arm was tucked in between us, so I could feel her breathing and be sure she was warm/not too hot.

I dozed on and off, feeling her skin, kissing her and telling her how loved she was each time I woke. I brought my stethoscope to bed each night in case I needed it, as well as her IV meds for the night. Around 1, I took her temperature because her hands felt cool. It was 104.2, which was normal at that point. I listened to her breathing and heart rate, and not finding anything different from several hours ago, drifted back off.

I woke again at 2:15. I put my hand on her chest and felt her heart beating normally and her breathing continued regularly. She was still warm. I kissed her again, and felt her breath on my cheek. Once more "I love you so much, Abby".
Then I closed my eyes again.

I woke at 2:44am, and immediately just knew. She was still warm, but not breathing.
I grabbed my stethescope to confirm what I already knew. I listened as long as I could bear to. I'm not sure if it was the full minute I was going for or not. I knew that at the end, breathing could stop and start a lot, and I wanted to be sure. Each silent second, waiting for the sound of a heart beat that I knew wouldn't come, broke my heart. My eyes filled with tears as I gently set the stethescope down.

I wrapped my arms around her and cried. I held my girl, and looked down at her peaceful face. She had a tiny smile, and looked so incredibly peaceful. I felt a sense of relief that she didn't look awful. I knew that she had gone quietly and gently the way I hoped she would. My arms were around her, and I knew she hadn't made a sound or shuttered. Later, I would wish that I had been awake and known the exact moment she was gone, but my immediate reaction was gratefulness. I didn't want to see her last breath. I still wanted desperately to save her. I envisioned forcing myself to only hold her and not do CPR. I didn't know if I could do it. I didn't want to let her go.

Every second of those last months, I wanted it to be different than it was. Every day after TPN stopped, I wanted to restart. Somehow, the last minutes being out of my hands helped me.

I finally sat up, and stopped her IV. It made me happy to finally stop that pump. I wanted it off of her. I just wanted her finally free from all of it.

I got up to tell Jeff. I walked into our bedroom and saw him lying there, hating that I had to wake him and tell him that his daughter was in Heaven.
"She's gone"
Immediately, he sat up and knew, but had to ask again. "What?"
"She's gone". Then I told him when and how, as we held each other.

We went to Abby together and stayed with her for a while.
I called hospice around 3:30. The nurse came over, and listened to her for a full minute. I knew she was gone, but still held my breath until the minute was up.
We washed her little body. I bought her special pajamas to wear. I still wanted her comfortable, and to look like herself. She wore them a few times before that because I wanted to remember her alive in them. We cut the central line off, and took out the g-tube. I wanted her back to herself badly.

I knew I wanted to care for her after her death, so we had planned and prepared for it. We knew what we could and couldn't do for her. I didn't want her embalmed, mostly because I felt she had been through enough. I wanted everything to be as natural as possible at that point.

We wrapped her in a blanket in her bed, the hospice nurse left, and we spent a few more minutes alone with her, for the last time.


 

Randoms

~ Thinking of this sweet face today. She always loved to "eat" stuff. She loved tastes and textures. The irony of the last year and a half is unbelievable. Missing her.




~ This came in the mail today. It nearly stopped my heart. I didn't know they were sending it. It's a heavy plaque of the obituary from the newspaper. So sad. It may be sweet, but not today.




~ Yesterday this came from the hospital. The mail isn't so fun anymore.




~ We are heading to Virginia for a quick weekend. I can't wait to see my family. My sister is having a Halloween party. We are all happy to be together again for something not so sad.

~ Sarah broke her baby toe. She was bringing Jaws (Glory) in and being dragged. She smacked her toe on the deck railing outside. I sent her to school where she walked on it all day. She came home in pain with a super swollen, bruised foot. Jeff took her to the ER. My mother of the year trophy should be arriving any day now.

~ Emily has a miserable cold. She's stuffy and achy. She stayed home on the couch all day yesterday. Today, she wanted to try school, and no fever so off she went. I felt bad for sending her, but I really needed the time. Seriously, that mother of the year trophy is slllooowww. Lol

~ Word prediction is driving me crazy. Generally, I love it because I'm a terrible speller. Today, it's coming up with some funky words.

~ I like my "onion" post, but realized that Jesus said basically the same thing, much more eloquently in that whole vine and branches thing. I'm sure it's obvious why I didn't relate as well with a beautifully manicured vineyard. I take Christ at his word, but in my own brain, I'm sticking with the onion. :/

~ Glory is the worst dog ever because she lives and breathes to find something to do this to:




She did stay at Emily's feet all day yesterday though. I suppose she is temporarily pardoned. She receives daily death threats, but usually does something just cute enough to get a stay of execution.

~ I'm looking for fall stuff on clearance now. I realized this year that I don't have much. That's okay because I really don't want to decorate this year, but next year I would like to finally have the time and energy to do it. I found this at Kirklands. I like it.





Mercury glass...so cute.

~ That's all for now. I still miss that face at the top.


 

Onion

I'm convinced my faith is like an onion.




Recently in bible study I shared a story about a time when my faith was weak. I talked about my struggle with my special needs children and the questions I had for God.

Then, almost as soon as the words of question were out of my mouth, during the video portion of our study, a mom shared her story of her daughter who was diagnosed with CP. She eventually ended up with a diagnosis of a terminal disease, but her words told a story of her immediate trust in God, and her willingness to raise that special child without question.

I left wishing that her story had been my own. I wished I didn't have a testimony filled with questions and answers. I know what I believe, but I question the way it plays out in real life. How does faith and my perfect God fit in to my messy, sometimes sinful life? How did she immediately trust God?

As I chopped an onion for dinner that night, I looked at the way it holds together if I leave the root end intact and thought of how much easier I'm able to work with it. I did it right with one onion and forgot with the other. One fell apart. I threw the dry skins away, and again thought of my day.

That's when it hit me. I'm an onion.

There are top layers of me that are useless to God. They were formed in the world and filled with my own ideas. They slough off easily and hold no value. They were the places in my life where I wished desperately for life to be the way I saw it. So many things I wish weren't in me live there.

But deeply rooted, is an unshakeable faith in God and His plan for my life. There lives layer after layer of what He sees in me, the places He created in me. Layers that he delights in and can use for whatever it is He is making. I may not know if I'm a part of a big pot of soup, or the main ingredient like an onion suffle. Either way, it only works if I stick to the right end.




There may be many days when I wish my story was like another's. Maybe I would like to be chocolate; definitely something carbolicious. I'm simply not those things. I only have the story that God gave me, and I'm learning to be thankful for it. The story of an onion.

So then, just as you received Christ Jesus as Lord, continue to live your lives in him, rooted and built up in him, strengthened in the faith as you were taught, and overflowing with thankfulness. Colossians 2:6-7 (niv)

Pumpkin patch

Jeff and I took the girls to the pumpkin patch today, and walked around the corn maize for what seemed like forever.






We had so much fun, but it was a little tough on Emily.



She continues to struggle with seizures, and today was one of those days.

I'm still glad we were able to get out. After spending months at home or in the hospital with Abby, we are trying to stay busy.







When I got home today, I looked through the pictures we took and missed Abby so much it was hard to breathe. She wouldn't have liked what we did today, even if she was well. It would have been too much for her, but seeing a picture of all of us without her broke my heart.







I wanted to touch her little hand again and kiss that face. It's overwhelming to feel so desperate. I've missed her everyday, but suddenly today, I would have given anything for just a few minutes with her. Most days, I feel some peace in knowing she is safe and not in pain. Today, I only wanted her. I will forever be amazed at how selfishly I love her.

If she hadn't been in so much pain and suffering the way she was, I never would have let go. There isn't a day that goes by that I don't go over and over every single second of it. The whys and whens of those last months. There isn't a single minute that I don't wish there had been another choice.

It's like watching the same movie, or rereading a book and wishing for a different ending. Even though I know what happens, each day, in my mind there is a different road we could have taken that led somewhere else. But, with every turn of the page and each new day, it still ends with a mother talking to the air, giving it her daughters name.

My Dear Abby,

You probably can't hear me, and it isn't even fair of me to want you to, but I just have to tell you again that you will always be in this family and with us always.

I know you are safe and joyful where you are. I'm sure you wouldn't come back if you could. But that doesn't keep me from wishing I could see you again. I long to hold you and feel your little hands in mine. I wish you were in our family picture today, healthy and happy.

I imagine you in heaven, surrounded by light and love. I see you with family you've never known, in the presence of God. I love you so much, that it's difficult to imagine that God could love you even more.

I miss you every second of every day. Even though we get up and keep going, we can only do that because you would have. I know that you were strong and brave, so I try to be the same, but deep down, I'm not. You were those things, to the core, and I miss that strength that was all you.

I know there will be many pictures now that I will look at and see only the faint echo of would could have been. You, my girl, there smiling with us.

I have to keep remembering that nothing here could ever compare to where you are.

I love you and miss you. Big!!

Mama


 

Florida

This week was Hannah's fall break from school, and Nola needed to test for her CCI public access, so I decided to let Sarah and Emily cut school for a few days and head to Florida. It was a very difficult decision. Not.

We had a great trip up, except for some mild car sickness from Emily on the way in. We decided to stay overnight in Georgia, which was fun. Hannah and Sarah hit the pool, and Em and I hung out in the room.

It was such a deliciously normal thing to do. I could have never stayed in the room by myself for any real period of time with both girls. I feel guilty saying that, because of course I wish Abby had been there. But I enjoyed being able to hang out with Emily. I loved being able to say "sure, go swim" to Hannah and Sarah without worrying that I couldn't handle it on my own.

The entire trip was bitter sweet. I will never say that having a single child with a disability is easy, but I will say that based on what we've been through it was a thousand times easier. Even packing. I kept thinking I forgot stuff because I've never packed for only one. SO strange.

As we drove in to Florida, I was swamped with memories of driving in for the first time with 3 year old babies in the back seat. I was so scared of what the future might hold, and through blurry, tear filled eyes looked up to see a double rainbow. I smiled and drove in to my new life.

Driving back again without Abby only ached. Seeing the house she grew up in, and the schools she attended hurt. I didn't expect that. Here in NC, she was sick, home, or in the hospital. There, she lived. Really lived. There, I missed her. There, she simply was.

Even as sad as some parts were, we had a lot of fun too. 

The first day I went to my favorite sushi place. I'm not gonna lie, that was pure bliss! Nothing compares to the super crunch roll.

Sunday we went to church. That, I expected to be hard. It wasn't. It felt like going home. I loved being there with all my sweet friends. Hannah and Sarah were able to hang out with their friends, and Emily had her Mary Beth. It was a great day.
 

Then we had to get Nola ready for her BIG test!

I don't know what was up with Emily's face there, but she loved giving Nola a bath!



Sunday Evening, I spent eating Chinese and laughing with my Crossings friends!  <3 p="p">
Monday, Emily and Nola did amazing on her public access test through CCI. Nola is a rock star. She made us all look good!

Tuesday, I took the girls to the beach, which was wonderful. The beach was perfect. Gorgeous weather, perfect water. Seriously, my happy place.
 

We took a few minutes to remember Abby.

That night I was thrilled to be a part of "sew with me" at Crossings. They made dresses for little girls in Papua New Guinea.  I love these girls, and we had SO much fun laughing and doing something really good!

Debbie seems to be wearing hers, but it's darling and a great color on her!  I love how cute Lucy's turned out!

I loved helping with, although I do pray for the little girl that gets the dress I made. :)))

I think it's really cute!!!

Then sadly, it was time to go home.  It was a fabulous trip, but I needed one more day because we didn't get to see Emily's friend Skyler (which added about 30 minutes of Emily tears to mop up before we left), or my friend Kathi. 

I guess that just means we have to go back really soon! 

All in all, even with the sad parts, it was good.  That's how life will be for us now.  New opportunities and possibilities with the constant knowing that someone really important is missing.  I sure with it could have been different, and Florida could have been greeted with Abby's big smiling face, but I'm grateful for the trip we had!


 

Yay! Yay! Yay!!!!

I'm so very excited about my new blog design! 

Thanks to Jennisa from Once Upon a Blog for her patience! I love it!!

A very special thanks to my dad and Jean too, for loving my blog enough to sponsor the change! 

I'm running Emily to the neurologist and then I'll letcha know all about our Florida trip! 

Hope you all like my new blog design as much I do!!!

Motherhood

I have really good kids. I know how blessed I am. But even really good kids are occasionally going to do things that as a mom, I definitely wish they wouldn't.

Just to preface, this subject is blogged about with my daughters permission.
 
We all know that raising a child is hard work. You teach them, tell them over and over, beg and plead for them to live life in a way that causes them as little pain and suffering as possible.  I love my kids and want them safe and happy. 

Over the years, I have spoken at length with my daughters about common life choices, and what we believe as a family.  I thought just from the nature of my daughter that there were a few we didn't have to worry about.  Topping that list was tattoos (and maybe heroin...don't worry, this post isn't about heroin :). 

Hannah has a well documented fear of needles.  Seriously, 5 people have held her down for a single finger stick before.  She is a certified nut when it comes to that stuff.  If you recall recently the 20mg of Valium it took to get her tooth filled. 

So, I was shocked and less than thrilled when I learned that the little stinker got a tattoo.  Well, still shocked.  I can't believe she paid someone to come at her with a needle--I'll cover that one in a minute. 

She is 19, living at school, and you may be thinking that it's really none of my business.  In some small (technical, perhaps legal) way, you're correct.  In all the rest of possible ways, it's totally my business. 

First, I'll begin with my beef with tattoos in general.  No, I don't think they are the evil of the world, and I've seen some that actually look cool--if you're in to that sort of thing.  As a Christian, I believe that one of our responsibilities is to try to do life God's way (Leviticus 19:28).  Even if we can't understand it in a little thing like a tattoo, I believe that He knows what's best for us.  Just like my kids may not understand the whys of everything I tell them, I still have my reasons.

Secondly, I believe it's a form of bondage.  Some people get them for just that reason.  They want to remember exactly where they were in that moment.  I firmly believe that it is never God's will to emotionally bind us to a single experience our entire lives.  He wants us to move forward.  A little heart on the hip may always be fine, but as a 40 or 50 year old, you may look at it as a silly whim of youth.  You will always know what you were experiencing in that time, and what if that is an experience that God would like to free you from?  It just doesn't make sense to me. 

But here nor there, it's done.  I have a few personal reasons that I specifically wish Hannah hadn't done it now. 

• She used our money.  She doesn't have a job and used the money we give her to do something she knows we don't approve of.  If she's really adult, she makes decisions on her own dime. 
• She didn't tell us.  We found out.  Again, if she's so grown, tell us.
• We would have counselled her to wait a while.  She just lost her sister.  She's hurting and making very emotional choices.  She could face the needle because the worst thing that could happen did (losing Abby) so needles aren't so scary.  She may have still chosen to get a tattoo in 6 months or a year, and I would have still wished she hadn't, but at least I wouldn't have felt like she was forever binding herself to the feeling of heartbreak one experiences so soon after a death.  

She was a good kid at the top of this post and she's a good kid at the bottom.  At least she put it where it can only be seen if she's wearing a bathing suit.  whew.  I still have my reasons for not liking them, she still has hers for getting one.  I told her what I felt about it, she will pay us back for it, and now it's over. 

Man, I sure wish kids made motherhood a little easier. 

Her room

I finally got brave enough to go in Abby's room. I'll be honest. I haven't even changed the sheets. She took her last breath in that bed, on those sheets. I held her lifeless body in my arms and grieved there. I can still feel her when I crawl in it and hold her equally lifeless pillow.




I don't want to give that up yet.

Sarah wants Abby's room. Thank God. I need a purpose for it. Why else would I dare go in there and touch her things? Why would I strip the bed and wash away the tiny bit of my daughter that remains?

I jumped right on board when Sarah said she wanted it! I really needed a purpose for being in there.

Going through her clothes was the hardest thing I've done, except writing the obituary. Some of her more neutral clothes I left for Emily. But many of her things were just so Abby, I knew they would never be quite right on Emily. Even though they are twins, they have very different styles.



I put them in a box, and I'll decide what to do with them later.



I put most things in a box. I'm just not ready to think about getting rid of them. I watched that show "Hoarders", and often saw people begin to hold on to things after a big loss in their life. There is this easy (and true) spiritual answer that I freely gave if asked. The person is gone, and making a shrine of their room or keeping everything they touched wont bring them back.




It's not nearly that easy. It's not the things that matter to me; it's not wanting to forget anything about her. I want to remember the way she smells, her sweet face, and the feel of her warm body as I put those sweet clothes on her each day.

It's best that I needed to deal with it. Now, we can work on making it nice for Sarah. And Sarah will keep parts of Abby too, like the cherry blossoms Abby chose when we moved in. We poured over the Internet looking for something for the wall. Abby loved the flowers, but I tried to talk her in to something else. She stuck to her guns and got what she wanted. Now, I love it because its hers.




Her favorite Legos that sit, exactly the way they were the last time she was able to play.



The one thing I won't miss is the shelves of medical stuff. It makes me a little mad to look at it. She had everything, and it wasn't enough. Closets filled with whatever we could think of, none of which worked.







Now, we work on moving on. Oh my, that is so hard! I said at her memorial service that we will go on because she would have. It's so true. Nothing would have stopped her.

Your mama is trying, sweet girl!