Too long

I had no idea that it has been so long since I posted here, but that's the great thing about the Internet.  Time Stamps.  I am absolutely certain it has been that long.

We've all been doing well.  Busy, as always, but well. 

Hannah is home trying to figure her next step out, and working at Petsmart while taking classes.

Sarah is in to as many things as possible.  As school ended she was still busy with chess, shot put on her middle school track team, and of course band.  She still loves the flute.  She is just about to leave for UNCG music camp which should be great for her. 

Emily is also doing well, although she had a tough spring. We tried to change her feedings from j-tube to g-tube and she did not care for that at all.  She stayed in the hospital for a few weeks trying to decide why she didn't like it, but the bottom line is she didn't.  She tolerated j-tube feedings relatively well, so that is what we are doing.

We have decided to have a surgically placed j-tube put in because the G-J she currently has irritates her stomach lining and has to be frequently replaced.  It just clogged on Tuesday, but they couldn't get her on the radiology schedule for Wednesday, so we had to wait until yesterday.  We weren't able to feed her much through the g-tube portion so she had a tough couple of days.  Praise God, it's back in and she is resting comfortably in her bed.  When she gets the new port, we will be able to deal with these situations right away at home. 

If anything, the last few days have cemented our decision.  I really hate, and I mean agonize, stay awake at night, talk doctors ears off searching for a different option, cry, ache, and seriously lament over the thought putting that little girl through anything else.  As awful as that is, my hope and prayer is that placing a stable tube will help her in the long run. 

Everything I hear about this surgery tells me that the first week or two will be rough, but as far a long term ease of use and stability, it should be the best thing for her.  So, July 22 is the big day.  We don't have a time yet, but if anyone still reads this blog, I'm asking you to begin praying for my girl. 

Pray she would stay healthy until surgery (she is going to an afternoon summer camp next week around lots of friends) and that everything would go well.  Of course we want a quick recovery and as little discomfort as possible.  My greatest fear/prayer is that she would handle feeding well after surgery.  I definitely nervous about feeding issues.  So, I'm praying for her, and praying for a nice, long, hospital free life with a healthy girl!!

Thankful

We just finished our second Thanksgiving without our daughter.  I'm not sure how that's possible, but it's true. 

I wish I could say it's easier, but it's not.  Every day is further away from her, and yet I know, it's closer to her too.  She used to consume every thought, but each day fades them, and that is a grief of its own.  I think of her every single day,  but not every minute.  Last year, I could talk about her without crying, this year, I can't. Seeing her name in print leaves me longing for her in a way that is hard to shake.  Abby.  Abigail.  Abby-Grace. 

I said that name more times than I could ever count, and now it has drifted from my vocabulary.  My Abby, who consumed this blog, and my life, isn't here anymore.  There are no new stories, struggles, funnies, or challenges.  The life I lived with her has to last my lifetime and I know it will never be enough.   It's really hard for me to write, knowing that words in print are leaving her behind too.  I have no reason to say 'Abby', except for my own desperate need to see it on the screen. 

My stories now, are about learning to live without her, not living with her.  Another grief all its own.

Jeff and I were getting Christmas ornaments down from the attic tonight when I came across a box of Abby's things.  I opened it, and pulled out the first item. 
'Oh, Jeff, look! Abby's IV backpack.'
There was silence as I continued to poke through the box.  Abby's pain log, a notebook with doctors orders, DNR papers and med lists, and then her sweet stuffed animals that sat on her dresser, her dolls, and a necklace.  He didn't know what to say, but to me, that was Abby.  Lot's of  medical stuff, but mostly my child.  When we talked about that, we could love seeing the IV backpack as much as the other things.  They kept her with us, and were apart of us all.

Our lives may be moving on, but my heart will always remain with my precious daughter.

Even with such great sorrow, there was much to be thankful for yesterday.

Emily is doing great!  She had lot's of g-j tube trouble and drama for a few months, but seems to be settled at the moment.  She is cheering for a competitive cheer team, and did a night with her school, and will cheer for the special Olympics basketball team next week.  She LOVES it and we are so proud of her. 

I have more catching up to do than I have time, but I just wanted to say that I am thankful.  For my family who show up for me and miss her with me; friends that I miss more than air; and for Abby.  I would walk through the pain of losing her a hundred times over to have had the 14 years, 7 months, and 6 days of seeing that sweet smile.  I am unbelievably thankful for that.  I'm thankful for the life I live, my husband, my girls, and most of all for the the peace I have in knowing I will see Abby again.  Even in all the grief, there is hope.  I am truly thankful.

I'll leave you with some 'catch up' pictures, and my hope and prayer that you all had a day filled with thanks too.

Cheering for Greensboro Allstars

Cheering with her friend Megan at school

Sarah playing the flute at my brothers wedding

All of us

Emily, being a queen for a day surrounded by awesome chefs

An oldie, but a goodie of Abby.  That little girl LOVED Legos.  <3 td="">

I am the mother of teenagers.

Really, I am.  I knew it was coming and thought having already raised one child, I could handle it.  I can, but Emily and Sarah are each completely different types of teens from Hannah and each other. 

Hannah was kind of steady and really pretty easy.  She wasn't boy crazy or too dramatic.  I think I have both of those things now between Emily and Sarah.

Emily is loud and opinionated.  And she likes boys.  If she could crawl out of the window there is no doubt she would be the child we bolted windows and doors for.  As it is, she looks at those boys and smiles her sweet Emily smile.  She's completely in love with Bobby Flay (Iron Chef), which I get.  I love Rick Castle.  I think it's perfectly fine to have a TV crush.  She is so funny when she watches Iron Chef because she knows who it going to win, having watched it a million times.  She still jumps and gets so excited when they say his name.  He's a lucky man to have a fan in her. 

Lately she is ALL OVER me about the radio.  She only wants it on one station.  Luckily it's the one Jeff works for.  Every day she gets in the car and yells at me until she's sure it's on the right place on the dial.  She even makes me listen to commercials.  It really is funny, and slightly annoying as any teenager worth her mettle should be. 

She uses a communication device to speak and write, and recently got a new keyboard added so it can save data and interface with  a PC.  The keyboard that she uses for that function doesn't include word prediction or backspace keys.  I keep trying to explain that she only needs to use it for computer classwork, but the little stinker yells at me and goes right back to using the wrong keyboard.  She won't listen.  I put the correct one up and five minutes later I walk by to see she's taken it down, and put the other one up.  I love this independent streak she has going on, but it's also a challenge.  Teenager. 

Sarah is another one.  Only 13 and still generally sweet, she's just beginning to become a challenge.  Picture day is tomorrow, and she and her friends decided today they would all wear dresses, so of course, she has nothing to wear.  "Will you please, please, please take me shopping tonight at 7:00pm and then straighten my very long, Rapunzel like hair when we get home because I'm absolutely certain you have nothing else to do?" 

It's possible I added a few of my own words to that quote, but you get the point.  I know I could have easily said no, but honestly, such a deliciously normal problem is impossible to resist after all I've been through.  So, I went because I forgot I was dealing with a teenager.  She tried on 5 dresses (4 were my idea, so easily ruled out).  She didn't like any of them and decided she was wearing jeans, which led to the hunt for a new top.  After trying on at least 10 and trying unsuccessfully to talk me into going to another store, she decided she was taking the original dress, and adamantly denied declaring only moments earlier that she wouldn't wear any dress.  Teenagers. 

These are just small examples of my life now.  I can't express the exhaustion or joy in everyday, normal, humdrum issues.  It is a blessing to be this kind of tired, and to have teenagers.  Even when they drive me nuts. 

Catching up

Whew!  Time flies whether you're having fun or not. 

Emily first.  She's doing great overall.  I've been very, very busy with her, but not in a bad way.  She started school (1/2 days) in a school she's not zoned for, so I am busy taking her to and from school.  It's a huge change from being home a lot to running around all the time.  I'm finding that I need to organize my time better to fit everything in, which explains the lack of time at the keyboard.  I'm not sure how in love I am with high school, but I'm trying to give it a fair shot. 

She had an upper GI last week because she drains out a yucky mix of formula and other nasty stomachy things from her tube all the time.  She also consistently has blood in her belly from what we assume is the tube irritating it.  Her blood counts are fine, so we know it isn't serious.  We are waiting to hear when we can replace the tube.  She's scheduled for a dental October3, which isn't a big deal, but we don't want her to go under anesthesia twice too close together.  The upper GI showed the SMA syndrome resolving which is a huge blessing, but she's not quite ready to be done with the J-tube yet.  After we replace this one, we shouldn't have to do it again.  This should last about 6 months and she'll be done with it by then!  YAY!! 

Hannah and Sarah are both fine.  Sarah is doing awesome in band and as an 8th grader.  Hannah is trying to figure out what to major in.  She's two years into college and still not quite sure.  She's working on it though.  Having a 20 year old is hard in a completely different way :/

We just passed a year without our Abby girl in our arms.  I wanted to write about it, but just couldn't.  It is simply so, so sad.  My heart broke.  I think I felt everything I would have a year ago if I hadn't been so numb and sleep deprived.  When she actually died, having her was still so fresh in my mind and even my body.  I held her for so many hours last summer, that when she died it almost felt like I just put her down for a minute.  The longing to hold her and see her smile hadn't yet seeped in to my soul.  A year without holding my child is almost unbearable.  I miss so many things about her.  I have her clothes in a plastic bag without the air in it.  I just want to smell her and remember what it felt like to have her.  I miss that little girl.  Every day is another day away from her and another day towards her. 

That's my catch up for now.  Hopefully, my schedule will get in line and I will organize myself a little!  How's this time of year for you?