41

Time has not passed by quite enough to complain about blogger again, but I will anyway. I had a post I worked on for several days, that I finally got happy with, that is now lost in the blogosphere. Boooo! I don't know what happened. I hit publish, it said published successfully, and asked if I wanted to see it, I said yes, and poof! Gone. Yet gain, boooo to you blogger app.

I'm done.

For now.

Not really, but I'll hush.

Okay, one more. My little blog doesn't affect the state of the union, and I think that about 4.2 people read this, but I spent time on it, and I write about things I want to remember for some reason. It's VERY annoying.

Done now.

I turned 41 today. I have obviously evolved quite significantly from my five year old temper tantrum self.

Oh. Wait. Maybe not completely. I just threw a bloggy hissy fit. Sorry.

I haven't minded getting older before, and I don't now. Having another birthday is a blessing and a gift. I will never forget 40, of course. It was a place that my life changed course.

Every year that I am given is a huge opportunity to live life the way I hope to, and to make choices I'm proud of. Having just experienced the death of a child, life feels very fragile to me. If I'm lucky, I'm mid-life now. That is SO strange. I'm determined to make the most of it!

I had a great day, and enjoyed my husband and kids. We went to dinner, and the crazy guys at the restaurant smashed whipped cream in my face! I was shocked! Emily, Sarah, and Jeff laughed so hard they couldn't breathe, so I guess it was funny.




We are getting ready to go on vacation for spring break, and I can't wait! Just a few more days :)

I'm going to work on the lost post, and enjoy a bath to close out my 41st birthday. Not too shabby, my friends!


 

Test results

It's only Tuesday (Wednesday now, because I can never finish anything), so I'm not sure I can call this another whirlwind week, but it feels like it. Sarah has been home from school and continues to run fevers although she feels pretty good. She wants to go to school tomorrow so she isn't so far behind, but her temp is still consistently above 101. Emily came home from school okay saying she felt bad again. No fever yet, but she refused lunch at school, and dinner. She had a piece of butter bread, an applesauce, and 2 grapes. That's it. Ugh.

Her upper GI went great. We went through so many of those with Abby, and never had good news. Actually, every single one was worse that the one before. I didn't even realize how difficult it was to go through it until it was over. Emily did awesome, and the radiologist was great with her. It looked perfect. Absolutely no reflux or g-tube issues. Her belly emptied well, and showed no remnants of the SMA syndrome she had. Praise the LORD!

As I watched the screen (this test is real time), I was overwhelmed with gratitude. I had tears leaving the hospital. I realized how much I focused on Abby's weight, intake, output, bmi, and calories. It never had anything to do with any of that. Emily weighs less than Abby did when she died. Abby did not digest food. That was all. It stayed in her belly for hours and made her horribly sick. So simple, and so devastating. I always think of it as such a complicated situation, and in many ways it was. It was also very basic. Her stomach did not work.

We put 260cc in Emily's belly. It moved quickly through. She felt good. She was laughing at us. I watched her picture perfect scan, and couldn't help thinking of Abby Grace and the numerous times I held her hands through that test as she gagged and wretched. I watched and waited for the tiny 60cc we slowly trickled in, to move. At all. I watched her curved spine completely block her intestines. I held her hands as her swollen intestines slowly, finally appeared on the screen. It still hurts my heart.

It's not possible for two people to have more night and day results than my identical twin girls did. Nor could they have evoked such vastly different responses in me. I will always wish it could have been different for Abby, but I also could not possibly be more thankful for Emily's working belly.

Emily did have broken toes. My poor baby. It's pitiful. There's nothing we can do for it, and they will heal quickly. :) She's already feeling better.

I love good news, and I LOVE that I don't have to take Emily to a surgeon, and decide if we can all really go through that again. Emily's Nissen and g-tube placement when she 6, was very difficult and it took more than a year of intense work to get her to eat by mouth again. But not today. That gets to stay in the past.

We still live a whirlwind life, but not scary today!


 

Long week

This week has been tough for Emily. She had struggled all week. She simply felt bad. She napped every single day. She didn't make it through any of the last 5 school days.

No fever, not throwing up, nothing obvious. A little nauseated, and VERY tired.

I took her to the doctor yesterday, where we decided she only had a virus. Her CBC looked awesome and the mono test was negative. This morning Sarah started complaining of the same symptoms, so virus wins. Since I started writing this, Sarah has run 102-103.3 fevers, so I'm not sure if its the same or if its something else to watch for. She's a sick little puppy.



... Said the child with the fever.

Emily's nurse said she accidentally hit her toe on the wall as she was pushing her to her room. Em was throwing a fit at the time, so I didn't think much of it. She's been cranky this weekend, but I thought it was the virus, now I think it might have been this:




I feel awful that I didn't see it. It looks painful and her foot is swollen too. She's having an upper GI series in the morning, so I'm going to ask the pediatrician to call in an x-ray order for her, just to be sure it's only her toe.

The UGI is to evaluate her Nissen. She had large volume reflux as a little one which she eventually aspirated. She had the flu at the time, which led to a long, complicated hospitalization that kept her from school for 3 months. We have reason to believe it's back, so we want to check it before it causes any serious problems. Obviously, the mere thought of GI doctors or surgery induce cold sweats in Jeff and I. I'm not going to think too much about it until we get the test results back.

I hate that virus', minor illnesses, and possibilities of surgeries do this to me. It's just plain scary. Abby's problems all began with a tiny virus. I never know if it's a safe little bug, or something that could change our lives.

I have to trust that God is in control wherever life takes us each day. It's not simple, and so easy to be afraid. I'm not questioning God's sovereignty, or thinking that He would ever leave or forsake us, but I know well that life can be painful; even though all things work together for my good, and the good of my children.

Please pray that my babies have a better week, and for Emily's upper GI to go well. We have had six great months and a winter without sickness. That is nothing short of a miracle. I pray that it continues. It has been a sweet, sweet respite.



 

Randoms

-It's been busy here lately! I'm hitting the gym 5 days a week trying to rid myself of 30 pounds that feel like 100. It's slow, but I think those clingy, mean fat cells are beginning to release their gluteal and abdominal grips. Either way, the exercise is good for me.

-One thing I've figured out recently is that children with CP beat you up! They are strong and push against bones and muscles...not theirs, mine. Jeff and I both have trouble with our shoulders. Abby really was a kid who liked to throw herself back, whether she was excited or upset. I have an old knee injury, so between shoulders and knees, we both feel old and creaky. I'm not complaining, I would take Abby pushing my shoulder out of joint any day, the point is "ouch", and I think I may be getting old.

-Emily has had a difficult week. She's complained of a headache every day. She doesn't seem sick, just whiny and a little cranky. She threw a royal fit because her speaker didn't work right in her computer. It was a minor problem that we fixed, but be then she'd had enough, and wouldn't settle down. Not fun.  She's also been waking up with blue hands again.  She did that in the fall, and no one knew why.  She doesn't seem distressed, but her hands look mottled some mornings.  It freaks me out.  The doctor isn't worried, and when I took her for EEG monitoring, I had them keep her on pulse ox.  It was fine, so I think she's fine.  I just don't like it.  Her seizures have been stable.  PTL!

Pictures never look the same, but I was trying to take one to show the doctor.

-I went on the women's retreat with our Greensboro Church this weekend.  It was a lot of fun and I met some cool new ladies.  Our speaker was Melissa Taylor, from Proverbs 31 ministries who does some awesome online bible studies if anyone is interested.  She spoke about leaving the past behind.  It was very challenging.  I have a lot more to say about that, but I'm going to give it its own post.   BTW:  she says "Hi" to our Crossings ladies :) She remembers that awesome retreat!

-Hannah was home for spring break last week. That's been nice. We took her with us to see Bon Jovi Tuesday in Charlotte. They were my favorite band in high school. He is 51 now, and he kept shaking his booty at the audience (picture Hugh Grant in Music and Lyrics). They also played a lot of new songs, which made us wait for the good stuff. As I mentioned before, it's possible I'm getting older because I did not enjoy that. He's still cute though :)

-Glory continues to be a menace to society. She tears the faces off of defenseless stuffed creatures of all shapes and sizes. Chews hangers at an alarming rate, gets into the trash whenever possible, and steals food off the counter or tables. She even tries this while we're eating. The worst thing is that she runs. Any chance she gets, she's immediately over the fence and the chase is on. Seriously frustrating. We need an invisible fence, but because this is a rental house, we can't do it. I'm worried the little stinker is going to get hurt on the road. In spite of her menacing ways, we love the little monster. We have to watch very closely for that gleam in her eye that says "I'm making a run for it".

-Sarah is doing great.  She plays her flute every single day.  She looks up pop music online to play.  It's really fun.  All those hours of squeaky notes that I thought would permanently damage my eardrums have paid off.  She loves to play, and it's really a joy to hear music in this house.  She's a good kid :)

-It's cold here. I love it in the fall, but over it in spring. I'm ready for warm weather. This is when I miss Florida.

-I love all the Abby stories, but I need more :)

-I climbed a mountain on the Women's retreat. I thought I was taking a leisurely hike, but ended up walking four miles straight up. It hurt my lungs. I complained and seriously wondered about pocket defibrillators. I was rewarded with this amazing view, which really was a reward.

-My favorite bible verse right now:
"And you also were included in Christ when you heard the message of truth, the gospel of your salvation. When you believed, you were marked in him with a seal, the promised Holy Spirit, ¹⁴ who is a deposit guaranteeing our inheritance until the redemption of those who are God’s possession—to the praise of his glory." Ephesians 1:13-14 niv

Daylight savings....

Is evil.

Seriously.

It's just not worth it people. Let time be what it will. Stick with it. I like long, bright days as much as the next guy. I love the sunshine, but until recently most of the world put on their big people pants and deal with the seasons as they come. Now, mothers in 70 countries have to deal with confused, sleep deprived children.

Emily is 15, and it still messes her up. Big time. Yesterday she woke up fussy and feeling bad. We took her to school late and cuddled her extra. After only 2 1/2 hours at school I got an email telling me she didn't feel well and refused to work. I picked her up, brought her home, where she crashed for a two hour nap. She seemed to feel better after that, but woke up today out of sorts again. I kept her home, just to try to smooth over one more day.

Even in the fall, with the extra hour, we deal with schedule confusion. Emily doesn't handle change well, so twice a year we hold, adapt, and slowly change schedules.
I have been a mother for almost 20 years now, and I can say emphatically, I hate time changes. I don't understand why most people on the planet consider them a necessary evil, because to me, and my child, it is simply evil. :/

Can I get an Amen?


 

6 months

Today, it's been six months since Abby went to Heaven. Jeff and I woke up thinking of her. We shared stories, and didn't talk about how much we missed her.

We talked about how much she meant to us, and laughed at some Abby moments.

We are going to lunch at a restaurant she loved after church, where we will share Abby as a family. It's important for me to keep her with us, and we have fourteen years, seven months, and six days of her to talk about.

One of the saddest things about death to me, is knowing that no one else will ever know how amazing, smart, kind, funny, tough, and brave my daughter was. Only through those of us who did have the pleasure of seeing that sweet face light up, or her smile, her stubborn streak, her little fingers baking, her laugh, can others know Abby.

So today, six months of the planet miraculously continuing to spin without her, I am asking anyone who reads this, and has a memory of Abby, even if you haven't met her but she impacted your life in some way, to share it with us. I am going to print and bind them. One day, Hannah and Sarah's children will know their aunt Abby through these memories, and they, like us, will be better for having met her.