Last

What do I say about today? I'm about to start Abby's last bag of TPN. We didn't get a delivery today. A box came from the pharmacy, and my heart jumped. For a minute I thought they made a mistake and sent it anyway, but it was just meds. In the beginning of this week, the doctor told us it was best to finish what we had here and let that be it.

I know how sick she is, but there just aren't words for how hard this is.

Look at your child smile. See that sweet face light up, and ask yourself if that one, that smile, is the one you could let go.

Because Abby has CP, and we have been faced with the possibility of losing her since day one, I think sometimes this seems easier or expected. I feel like I should be prepared in a way that those with typical children aren't. I'm not though. That little girl filled my heart the second I knew she was coming, and as challenging as life has been, she still fills my heart.

She is really suffering physically, her body is shutting down system by system, and I understand what's happening. She is dying, and there is nothing I can do to stop it, but there is this awful weight in my chest because this thing I don't want to happen is happening anyway. This very moment I'm in started 14 1/2 years ago when she was born. The minutes that her brain was without oxygen ultimately brought me to this day. This day, I have to know in my heart that I have loved her with everything I have, and hold her hand until she is home.

It hurts, physically hurts, to begin to say good bye. I don't know why I ever thought I could do this if the time came. Their entire lives I thought I would let go so they could be healed and whole in heaven. I thought there were worse things than death. I still think that's true, but those left to go on without them, I had not considered.

To top off all of it, Emily had a 103 fever last night. Today she was just sick. The pediatrician came by today and thought it was just a virus. She just went up to 102 again, so I'm not sure what to think.

As I said, the doctor came today and saw both girls. So sweet of her to make a house call. We made a few med adjustments, but overall, comfort is what we are still working towards.

I know we have a lot of people praying, and I appreciate that more than I can say. Please pray Emily stays out of the hospital too. I don't even want to think about that scenario.

Letting go

Abby continues to show signs that her body is shutting down. Her kidneys aren't functioning as well. She is having a lot of trouble with fluid in her feet and she wakes up very congested.

We are at the point where fluids aren't actually helping her and are probably making her worse. Continuing IV fluids will just make her passing less comfortable. We have held on as long we could, but now her body is telling us all that it's time.

My consistent prayer through this entire illness was that God would take this decision from our hands. I don't want His job. Life is His to give and take away. What's happening now is our answer. She is continuing to decline no matter what we do. I know that the best thing we can do is let her go gently and peacefully.

Today, I was very, very sad because I will miss her so much. But I also felt very, very peaceful.

There are so many things to do each day, so many emotions coursing through me. I've often wondered where God is in all that business. Those things have to be done. They are the things in my life that make me feel like I have some measure of control over this.

I can (and do) run around like crazy, make choices every day, work hard, and move through many situations myself. I can handle just about anything. But no matter how hard I work or how successful I think I am, I can not have peace in any of those things without God. He is the giver of peace, and I have that about Abby.

She is an amazing little girl. I am so very thankful she's mine.

I read this today, and really loved it:

Giving Up and Letting Go
Giving up implies a struggle--
Letting go implies a partnership
Giving up dreads the future--
Letting go looks forward to the future
Giving up lives out of fear--
Letting go lives out of grace and trust
Giving up is a defeat--
Letting go is a victory
Giving up is unwillingly yielding control to forces beyond myself--
Letting go is choosing to yield to forces beyond myself
Giving up believes that God is to be feared--
Letting go trusts in God to care for me.
~Hank Dunn


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Changes

Hannah moved back to school yesterday. It was bittersweet for all of us. She kissed Abby goodbye and had to go. It was so hard for me to tell her to say goodbye knowing it was probably for the last time. We all had heavy hearts leaving.

We decided to take everyone except Abby to move Hannah in. She rented a house this year with a roommate , so there was quite a bit of moving in to do. Grandparents kept Abby, and off to college we went. It was so busy there, and such a stark contrast to our home lately. There, life is moving on at breakneck speed. Kids are everywhere and it's excited and energized. Our house is quiet and what I hope is peaceful. I was overwhelmed with all the activity.

Hannah's place is cute, although small. It's good for her to have her own room and a little space this year. She's excited about her classes and being back. I'm happy for her. It was time for her to do something else. I just hope and pray she can push through and have a good year.

When Abby woke yesterday, I knew immediately that something had changed. Her breathing was slightly labored, her hands, feet, and face were swollen, and she was less responsive. I felt so torn leaving to move Hannah in, but decided to go. As the day went on the breathing evened out, but her feet remain swollen. She is far less responsive than she was even Saturday.

When we came home, she wanted to play with Sarah, but mostly slept through it. When I layed her down last night, she was taking two short breaths and then nothing for 12-15 seconds. I tried to breathe only when she did and felt starved for air. She seemed comfortable and peaceful though. I held her for three hours like that. I had to get up to shower (moving is sweaty business) and start TPN. I slept in her bed last night and surprisingly, slept well. Her breathing was much more regular by then.

As we suspected all along, the amount of pain medicine she needs to be comfortable makes her sleepy and changes her respiratory status. TPN is really irrelevant now.

Sarah and Emily start school on Monday, and again, I think this timing stinks. We've had all summer to focus solely on Abby. For weeks, she has been the center of the universe. Now the other children need to meet teachers and pick up schedules. We've had school shopping to do, and Abby is sicker everyday. Even if I had time to get the others settled in school and have each day to spend with Abby, it would be alright. She doesn't have that time, though. My feeble little human brain can't comprehend the how's and whys of now. But I still ask, why now?

I don't know, but I still believe there is a reason for everything.

There are many changes in our family everyday now. I'm not loving it.


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Odds and Ends

~Good news first. Our family pictures turned out great. We got very sweet pictures of everyone. I am very happy with them. It's a relief to have that done. I thought I would have to give up on that particular dream. Having them now is something I'll always treasure. 

Emily, Sarah, Hannah, and Abby

We have a lot of them to go through so I'll post as we go. Thanks for praying with us for these. Thank you, God for this blessing.

~ Hannah had a root canal today. NOT fun, but again, thankful its done. That was not easy because Hannah strongly dislikes hates needles. This was attempt two. The dentist gave her Valium, which did the trick. :) 

She starts classes Monday. There is so much to do for her. I doubt we'll get even close. She'll have to make do for now. She has to move in this weekend.  When we have a little more time we can catch up. Another year of rushing her to school and running back home to a sick child is insane. We all seriously need some calm.

~ Sarah's doing well. She is loving on Abby all the time. She is a wonderful sister. As much work as Abby can be, she loves her and will do anything for her. At the end of photos Abby didn't feel well, but Sarah didn't care. She said she wanted her picture with her anyway because we would know Abby was in there. I love that little girl.

Sarah and Jaws--I mean Glory

~ Emily has been sick the last 5 days. She's running an on and off fever. She's needed break-thru seizure meds all of those days. Today she started throwing up. She didn't keep much down all day. I did manage to get 6 ounces of pedialyte in her tonight. I think it's just a virus, but we all know too well how awful virus' can be for my girls. I'm praying it's nothing, and so far she looks okay. Her nurse has been pampering her, which she loves. This is a cool washcloth on her head and her favorite snuggy. Lol

She's a princess

~ I found someone to design my new blog and I am so excited to work on it sometime in September.  I loaded a quick template because those pictures at the top were driving me crazy and somehow my pages got moved and I couldn't move them back.  Anyway, I am thrilled that someone who actually knows what they are doing is going to help me :))  So. Excited.

~ Abby Grace. She had her baclofen pump refilled today. It wasn't a good appointment. We had to wait 25 minutes just to check in, which made me unreasonably nutty. Normally that wouldn't bother me, but today it did. That was her last doctors appointment, and they know how sick she is, so I thought it shouldn't have taken an hour. It was hard on her physically, and very hard for me emotionally. Everyday, every single day, I still want this to be different for her. 

Today at the doctor.  And why most of our pictures are in black and white ;)

Her bowel sounds continue to be intermittent, with all sorts of other nasty symptoms of GI shutdown. She still has awful days and smiley, happy, Abby-times too.

It's breaking my heart every day. I want this to be over so badly, but I can't imagine life without her. I think of her healed and whole and smile. I think of her empty room and can't breathe.
 

Typical, Jeff and I smothering her with kisses while she yells at us. 

Jeff and I have very hard choices to make very soon. Knowing that and actually doing it are very different things. We love her so much, and simply can't help loving her a little selfishly. Through this entire process we've wanted to do what is best for her. I just don't want to miss her like that. I want to hold her. It's all I've ever known.  Accepting it might be time to let go feels like I'm really saying I'll be okay without her smiling face in my life, and that will never true. I feel like doing what's best for her would be the worst thing for all of us who love her.

I always thought it took so much strength to hold on all of these years. Turns out, true strength will be found in letting go.