Thankful

Many times I am asked how I get through the day without crying. I answer that honestly, some days I don't. Some days I do cry, I do get angry. I think that's normal. But overall, I know that we are blessed, despite our trials. Of course I have days that I wish that our daughter wasn't battling a chronic, painful disease. But, that's the hand we were dealt. I recently had a friend tell me that she is "Currently having a disagreement with God." You see her son was diagnosed with a chronic illness. She hasn't yet seen the gift in it. Or, possibly she has, but still can't "forgive God" if you will. That may offend some people but that's how I see it. When we or a loved one are handed a crappy deal, we get angry with God. What do you do when you are angry? Stay angry, or forgive. I see the blessings that her sons disease has put in her life, I think she does too, but she isn't THERE yet. For the most part, I am okay with where we are. Sure, Jenna has daily pain, wakes up stiff and unable to bend her legs or flex her feet, takes way too many medications, gets sick from those medications, has muscle weakness, walks with a limp, struggles to keep up with her peers. But you know what? I have recently learned to just watch her, just silently observe. I'm still not sure if she even notices any of these things about herself, but if she does, she doesn't seem to mind. So why should I? She adjusts and presses on, so why shouldn't I? She really is quite amazing! Just last night I was watching her sit in the recliner, playing her brother's guitar (she is teaching herself!). She stopped strumming, wiggled around, adjusted her legs, sat and looked at them for a moment, it was clear they were hurting her, then she settled and began strumming again. AMAZING! Yesterday morning I heard her coming down the stairs on her bum, slowly, because her legs and feet weren't cooperating. When she got to the bottom, she stood up, got her backpack and went about the tasks of getting ready for school. AMAZING! There is beauty in everything, even in suffering. It is up to US to find that beauty!
There is a Mom right now, sitting in the hospital with her one and only baby girl. They are on day 27 in the hospital. On day 28, she celebrates her 5th birthday. That will mark 5 years of being sick. Now, how would YOU handle all of this. Here is how this Mom handles it....with grace and thanks.....

Some of the most beautiful man made things I have ever seen were all the amazing stained glass windows in Paris. They remind me of Eleanor. When the world looks at her unfortunately they see a bunch of broken glass and pieces that don't fit perfectly. When I see her I see all the small pieces coming together, the many breathtaking colors forming an awesome little girl.I will never understand why God made her so different but I know that she was made perfect and in His image. She is exactly the little girl He knew she would be and I am blessed beyond belief to not only know her but to be able to say she is MINE!

Blessed & Thankful

 Today we were able to go back to the church in South Carolina that so generously funded our trip to the Juvenile Arthritis Conference. The two words "Thank You" will NEVER be enough, they will NEVER express our gratitude to these people. Without them we would not have been able to attend the conference. The experience of attending is indescribable. The impact that it had on Kailey, Jenna and myself is intense. While telling of her experience today to the group, Kailey broke down in tears. (okay well I did too but that's besides the point) She told them about her new friend Parker and how amazing he is. She said that Parker is her hero, her inspiration. She wants to be a better person because of him. No matter how sick he is, no matter how much pain he endures, he remains happy and positive. She said that now when she thinks about complaining or she hears another kid complaining, she wants to say, "HEY, GET OVER YOURSELF." For Kailey, this is pretty big. :) In Jenna we see a better understanding of her disease, it's hers and she needs to own it. For me, the bonds formed FAR out way the educational experience. These other Moms are what will get me through this. I just wish that I could somehow express to this group of folks at the United Methodist Church in Fort Mill SC how so very thankful I am. We are TRULY blessed.

Surgery

Really it's a crummy thing anyway when you think about it. Though it's something that we are supposed to benefit from, it's still crummy. Who says, "Oh YAY! Surgery!!"? No one.

So anyway, today was Beanz surgery to place tubes in both ears and remove her adenoids in the hopes that we can drain the fluid and stop the infections. Hey guess what? My kids was difficult. I know, right? You can't even believe it. True story. Ears were first on the agenda. That's where all the trouble started. Her ear canals are oddly shaped. Go figure. The odd shape made it difficult, impossible really, for the doctor to get to her eardrum. SO, he accidentally "scratched" her ear canal. AND, the tube is in, but not in an ideal location. Therefore, it likely will not function properly, will need to come out sooner, and will cause some hearing loss while in place. And this is just the right side. Left wasn't QUITE as bad, but non the less proved difficult and the tube is again, not in the ideal location.

Next up was her adenoidectomy. Was pretty routine, until he couldn't get the bleeding under control. He said we are not talking significant blood loss, but substantially more than normal, more than she should have bled. He feels she must have had some residual meds still in her system. It was my understanding that it was just the Motrin that would cause issues with bleeding. BUT, I read this today in the Humira patient info: Blood problems. Symptoms include a fever that does not go away, bruising or bleeding very easily, or looking very pale.
Fabulous, right? Her rheum had said that if everything went well that she could resume her meds as usual this Friday. I don't think any of this qualifies as going well. I'll be calling them tomorrow.

She then had issues coming out of the anesthesia. Some of it was normal, disorientation, fighting with all of us to get up and leave. Then there was the issue of her forgetting to breathe. Yuh. In AND out Jenna!! She needed to be put back on oxygen which freaked her out and got her all wound up again. Anyway, once we got her calmed down AGAIN and breathing on her own, we were discharged.

It has been a LONG day. She is in a lot of pain. She is fearful of MORE pain. She is tired and cranky. She is miserable and out of sorts. BOO.

I was going to post some pics but for some reason they all wanted to lay on their side. SO, in lieu of photos I am sharing a song/video. I saw many things today from friends about praising Him, in the storm or the darkness as well as in the light, in the good times. He is in ALL of it. His glory is ours to have. I praise Him, even after the day we have had.

What a Weekend!

Our weekend started out with our first ever "Kid's Rheum" event. Since signing up, all of the events have been too far away for us to attend. So when I saw that this one was less than an hour away AND at a Children's Museum, I was pretty excited! So were the kids :) They had a blast playing with all the other kids at the museum. The grown ups had to sit and listen to speakers. I would have rather been playing but oh well. We heard from  a local pediatric rheumatologist and a psychologist that specializes in chronic pain management. They both spoke briefly and then we were able to ask questions. I asked, "Why does my daughter shut down and not want to talk about her JA and why does she deny any pain and or discomfort when it's so obvious that she IS in pain or uncomfortable?" They both said that unfortunately, this will likely only get worse as she gets older. It will be helpful to get her around other kids like herself so she gets a better understanding that she is NOT alone. Also to approach it like this, "Jenna, I know that you don't want to bother us with what's bothering you, but understand please that it isn't a bother to us. We want to help." Then give her options for how to deal with whatever it is, therefore giving her some control. It's worth a shot.

Then on Sunday morning we were off to South Carolina to meet the folks helping us to get to the JA Conference! I was so excited, eager, anxious all in one. We weer also exhausted due to being out late at the museum/event and thanks to daylight savings. Oh, and Daddy worked all night, but it's all good. They are such a great group of people with amazing hearts. They all welcomed us with open arms. When we were introduced I tried to thank them but 1) words will never be enough thanks for this incredible gift and 2) I got choked up and I hate that. It's still so incredible to me that our prayers of needing help, plus their prayers of needing someone to help brought all of this together!

I was planning on depositing the funds this morning so that I could get us registered and book our hotel room. BUT, Bean has a fever, an earache, a headache, has been asleep most of the morning and now her breathing doesn't sound right :( We have an 11:15 appointment with her regular ped so I figure we'll hit the bank then and I'll register and book later this afternoon. Hopefully we can get this kid feeling better. She had such a GREAT weekend! Stinks to start the week like this.

Isaiah 40:29-31

²⁹ He gives strength to the weary
and increases the power of the weak.
³⁰ Even youths grow tired and weary,
and young men stumble and fall;
³¹ but those who hope in the LORD
will renew their strength.
They will soar on wings like eagles;
they will run and not grow weary,
they will walk and not be faint.

This has been one of my favorite verses for awhile now. Not sure why, I just think it sounds so beautiful. Especially at the end of Lincoln Brewster's "Everlasting God", spoken in a small child's voice. Well, I guess there's a reason that it pulled on my heart, I just didn't realize why. Until Saturday, that's when it hit me.

Jenna has been in pain and beyond tired for months now, that's nothing new. Sadly it's just become a part of her life. She won't even take anything for pain anymore. She says, "The pain isn't that bad. I'm okay." I'm sorry, but that really SUCKS. She also says that none of the pain meds she has tried help, so why bother. That's just great, she is 7 years old.

That all changed on Saturday. They had a half day of school to make up a snow day. I figured, it's only a couple of hours, she'll be fine. Then, the weather was supposed to be beautiful that afternoon so we planned an afternoon at the park with friends. Again, thinking, she'll be fine. I mean, she's in pain anyway so why not get outside in the fresh air and warm sunshine and have some FUN! I forgot (yeah I know, Mom of the year) to give her some Motrin before school to maybe help ward off any pain later. I brought it to the park and gave her some while we ate lunch. Then she spent the next two hours playing and having fun. There was nothing really strenuous. She didn't run much, she spent most of her time on the swings or at the picnic table. She went down the slide a few times, watched the boys play ball. She really didn't DO a whole lot. When we were on our way home she was so quiet. A look in the rear view mirror revealed the pain on her face. I asked her if she would like a bubble bath when we got home. I could hear the relief in her voice as she sighed out the word "YES". That seemed to help revive her for most of the afternoon. By 6:00 though she was in agony. She could not get comfortable no matter what she did. I gave her some more Motrin and she finally put a pillow on the floor to lay down. She kept twisting and contorting, but, for the most part this seemed the best spot for her. Bedtime is 8:00, even on weekends. Of course Daddy was working, and Mommy simply can't carry her up the stairs to her bed. She made it up there, barely, and I tucked her in and told her to try to get some sleep for church the next morning. I serve at the first service and we attend the second. But, with Daddy working they need to come to both services so I knew that would be a long morning for her. They have their own special kids classes that they go to called Cove Kids. It's mostly teaching and learning, some crafts, some play, nothing that should be too much, ya know, for a normal kid. Mother of the Year forgot about a class for myself that I wanted to attend that afternoon. I checked with Jenna and she said she would be fine, she was excited to stay with her friends and teachers. *SIGH* Okay....if you're sure. YES! I'm sure! So we stayed and therefore didn't get home until 4:30, having gotten there at 8:30 that morning. When she is IN it, she doesn't realize the pain she is in. I guess that's a good thing? So what do you think happened once we got home? Yep, she was miserable. Gave her more Motrin, we had a quick dinner, then into PJ's and into Mommy's bed to snuggle by 6:00. She was in and out of sleep for the next two hours. Each time she would doze off she would let out a whimper. The dog was literally glued to Jenna's legs. At first Jenna was NOT happy and kept crying, telling me to make her move. After numerous attempts, and the dog pushing herself deeper into the bed and closer to Jenna's legs, I said, "Sweetie, I think she knows you don't feel good, and she wants to comfort you." Jenna looked down at her for a minute, then rubbed the dogs head and told her she's a good girl. Bless her heart. By the way, the dog followed Jenna all around the house this morning. So anyway, in and out of sleep in my bed for two hours, woke her up at 8:00 to get her into her bed, dragged her up and out for school this morning, more Motrin, dance class tonight, shot night, more Motrin I'm sure. Ugh.

So anyway, back to the bible verse. I want her strength renewed! I want her to SOAR on wings like eagles!! I want her to NOT grow weary, to WALK and not FAINT!!!!! A child should not spend days in agonizing pain over a couple of hours at the park! I am not questioning or doubting God on this so don't get me wrong there. I know that He has a plan and I trust Him in that 100%! But does that mean that I have to like it 100% of the time? Does that mean that I can't wish for something better, something different?

I Pray That Was It

So, as some of you know Jenna has been in pain for a few weeks now. If you are just now joining the party, WELCOME!, and you can go here and here to catch up on the latest :) Okay so last night was a "double Shot night" as seemingly all of us JRA families like to call it. Also, side note: Sunday seems to be just about every one's shot night. Okay, SO, last night Bean got her weekly MTX as well ass her bi-weekly Humira. I prayed and prayed and PRAYED some more. Please Lord, PLEASE let this be it. Please just let it be that she is in need of another dose. She was getting so progressively worse each day that I didn't think she would make it to school this week. By days end on Friday, Saturday and Sunday she couldn't walk. Daddy carried her, or she crawled, or she hopped on her one good foot. Despite the fact that it hurt her legs to do so. This morning she really struggled to get up and moving. She asked to please stay home and rest. It broke my heart but I told her to please go and try. If you can't make it then they can call me and I'll come get you. It was getting close to lunch time and we hadn't heard anything. So I suggested to Larry that we go surprise her with lunch. That way we'll know for certain. Well....as soon as she saw us, she bolted into a run, leaped up and wrapped herself around me monkey style!!! Feeling better Cupcake? She giggled and said YUP! WOW. What a difference. She seems back to normal now. Well....HER normal. Nothing is ever "normal" for her. But, for right now, she seems good! We go see Dr. Sagerman on the 25th. Very eager to get his take on all the goings on. AND to talk to him about CARRA and getting on the patient registry!! Is YOUR pediatric Rheum on it? Find out!!