What IS "normal" anyway??

Seriously, can anyone tell me who or what IS "normal"?? Don't we all struggle to find our own personal normal? Whether you are healthy or sick? So what IS normal?? Are YOU "normal"? I certainly don't think I am.
If you, as an adult, were diagnosed with a chronic disease that causes debilitating pain, how would you handle your day to day activities? Or any extra activities? Would you make adjustments to minimize the pain? Or would you continue to live life as always? Would you push on even further to live life to it's utmost fullest? Can you even answer those questions?? Now, imagine it isn't YOU that has been diagnosed. It's your toddler. You have been told that your baby or your toddler has a chronic disease that causes extreme, unimaginable pain and fatigue. What would you, as a parent, do? Can you even answer that? I'll tell you what we did. Since Jenna's diagnosis 4 years ago, we have in fact limited her activity. Isn't it part of our job as parents to protect our children from harm? So isn't that what we were doing? Protecting her? Well, in a sense, yes we were protecting her body. But what about her soul?! By limiting a child, are you not crushing their soul? I am not real sure what has woken me up to this. It could simply be that she is older now and has stronger opinions on things, I don't really know. All I know is, Jenna WANTS to do things. She wants to go jogging with me and her brother, she wants to play football with her friends, she wants to play on the trampoline with her friends, she wants to go in the bouncy house at the carnival, she wants to be "normal" like her friends! So why stop her? Initially I told her that she ISN'T like other kids. THEY won't have any pain after or while doing these things and she likely will. She told me, "I don't care.". Well, then why should we? If she is willing to pay that price, why should we stop her? Don't we ALL want our kids to grow up believing that they can achieve anything that they set their minds to?? So why should my kid be any different?! I am so very proud of her. She is stronger, braver, than most adults I know. You go baby girl, do it.

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!

Can someone please throw us a line....

...because I feel like we are sinking. It's been a rough couple of weeks. The good news is, physical therapy is going well, Jenna loves Miss Shirley. She has her custom made orthotics in her second brand new pair of sneakers in as many months and she loves those too. She is a flip flop and barefoot kind of girl so I though this would be a battle. She LOVES to wear them so I guess that means they feel good.
Now for the bad; Jenna "Bean" is having her surgery this Wednesday. She needs tubes in her ears and an adenoidectomy; routine surgery for a normal, healthy child. Life with a JIA child is NEVER normal and or routine. To prepare her body for surgery her rheumatologist wanted her off her MTX and Humira and the ENT wanted her off the Motrin. The rheum felt that given how long she has been on them, 2 skipped doses shouldn't affect her at all if any. WRONG. Friday May 20th was her last given dose, Friday May 27th was her first skipped dose. By Tuesday May 31st she was miserable. She came home from school complaining that her knees hurt and she wasn't able to fully extend them. I tried to get her into the tub to loosen her up, but she couldn't extend her legs to get them under the water. She laid on her hip and that worked. Since then we have noticed her fatigue worsen. All this time we thought it was a side effect of her meds. Obviously it's the disease. Also joining in on the flare up party is both feet, one ankle, both elbows and a random few digits, this is on top of both knees flaring too. Miss Shirley could see that she was compensating for pain even while doing her PT in the water this past Saturday. Her teachers at church yesterday could see that she was tired and she simply wasn't herself. She has a very grim, stone set face. If she can get through the surgery with no issues then she can have her meds again this Friday. I pray that they work just as quickly as they stopped.
Now, seeing her suffer is bad enough. Knowing that she CLEARLY is nowhere near even a medicated remission is what stinks the most. I want her OFF these meds!!!!! Seeing what a couple skipped doses is doing to her, now we see we still have a LONG road ahead. ):

Jenna's Story

It all started one morning in July of 2008. It was a typical morning for us. Larry was getting ready to head out to work for the day and I was getting the 3 kids and myself ready to head to the beach for the day. As I was busy making lunches, gathering towels, toys and sunscreen, the kids are all running around the house in their bathing suits, Larry asked me, “Why are Jenna’s knees square?”. I thought he was crazy; it was the oddest question I had ever heard. I told him about that much and went on about what I was doing.

While at the beach, my Mother asked me the same question, “Why are Jenna’s knees square?”. It was as though time stood still and I felt like I was being sucked into a vacuum.  I figured there had to be something to it if both of them were seeing something. Some Mother I am huh? I called my little 4 year old Jenna over to me to check out these square knees. Hmm…maybe they are square. I then called over my 10 year old Kailey and my 7 year old Dillon. I wanted to line them all up and compare knees. Son..of…a…gun. Something was clearly wrong, yet nothing was bothering her. We spent the rest of the day at the beach as we normally did since Jenna seemed fine; I figured there was no emergency. The next morning I was able to get her in to see our pediatrician to check out these square knees.  She agreed that they indeed were too big and actually did look squarish. She said something isn’t right but that she didn’t want to jump to conclusions. She got x-rays of both knees that showed excess fluid and swelling. Uh…okay. She told us that the only thing that she is aware of that would cause that is Juvenile Arthritis but she was no expert on it and wanted us to see a rheumatologist ASAP. Uh…ooookay.

The dates get a bit sketchy and fuzzy from here but I believe it was within a couple of weeks to a month at best we were in to see a rheumatologist. He took some x-rays himself, ran some labs and did a physical examination. Keep in mind now, Jenna was ONLY four years old. The lab results confirmed the diagnosis of Juvenile Arthritis; his examination showed that she not only was affected in both knees but also a few fingers, toes, one elbow and one ankle. She was put on Naproxen in an attempt to control the inflammation in her joints. This turned out to not only be a failure but an epic failure. The Naproxen did nothing for her swollen, by now painful joints, but she also had a severe reaction to it. She developed sore, oozing blisters all over her extremities.  Unfortunately it took a few weeks to figure out that it was the Naproxen causing this. Once taken off the Naproxen the sores went away immediately. The Naproxen was then replaced with Motrin, she was scheduled to have the excess fluid drained from both knees, steroids injected into both knees and Methotrexate (chemotherapy med) was added to the mix. All in an attempt to gain some control over this disease. Remember, she is four years old. While the procedure itself was a nightmare, the draining and injecting worked WONDERS in conjuncture with the MTX and Motrin. She showed immediate improvement in all of her joints. And for the most part the swelling in her knees has stayed down. She did continue to have pain and some stiffness and needed 2 tsp of Motrin 4 times daily.

The labs that the rheumatologist ran in the beginning showed that Jenna was ANA+. He explained to us that this put her at a higher risk for developing complications with her eyes. What in the world?? Arthritis affects the eyes? Oh we had no idea the ride that we were in for. At her first eye check we were told she was all clear. Three to four weeks later we went back and she was in a major Uveitis flare up. This is the beast that proved to be our biggest battle. Jenna was put on eye drops to control the inflammation; I believe these were four times daily. At one point she was on three different eye drops but I honestly can’t remember all of them, how often she had them and what they were all for. I do however know that NONE of them are safe to use for an extended period of time. So, we had to find a systemic med that would not only treat the JIA, but also the Uveitis. Clearly Methotrexate was not going to work alone. At this point we added Enbrel to her med list. Enbrel is a once weekly shot, Motrin orally 4x daily and at that time she was taking her weekly MTX orally too. It felt like we were always in a doctor’s office or on the road. We had to take her to her rheumatologist , about an hour away every 6-8 weeks and she needed to see the Uveitis specialist, about 3+ hours away every 4 weeks! It was getting to be too much and nothing was getting better, rather it was getting worse. Over the winter months Jenna would wake up crying and refusing to get out of bed because simply getting up hurt her too much. We lived in Maine at this time and the winters can be brutal. If we had to go outside for anything I would have to carry her because her legs would freeze up. We felt as though we were banging our heads against a wall and for nothing!

We asked her rheumatologist if her felt that maybe a warmer climate would help her. He said that not only would it likely help her, but if we were interested in NC, he could get her into the Duke Children’s Hospital Pediatric Rheumatology clinic. The bonus is that the also have a pediatric eye clinic to see her and treat her Uveitis. One stop shopping. We researched them and saw that this is what we had to do for Jenna. We packed up and headed south, leaving behind all of our family and friends in June of 2009.

At her very first appointment the pediatric rheumatologist at Duke told me that her meds were ALL wrong and that she was so happy that we were here. Administering the liquid injectable MTX orally is not advised and Jenna is a clear reason of why, it doesn’t work. The Enbrel is not proven effective when treating Uveitis. Yeah, we figured as much since she had been on it about 8-10 months at this point with no sign of improvement. She also was not taking any folate or prevacid to counteract any side effects that she may have from the MTX.

Initially we tried just changing the MTX to injectable form to see if that would make any difference before we tried changing her from Enbrel to anything else. I wanted to take things slow. At her next visit however, there was no change in her eyes. Her joints were okay for the most part by this time with only minor swelling and pain.  Her MTX was increased from 0.4 ml to 0.8 ml and we made the switch from Enbrel to Humira. Her body did not tolerate the increase in the MTX. She had severe abdominal pain and her hair was falling out in clumps. I called the ped rheum and she backed her down to 0.6 ml, increased her folate and added prevacid to Jenna’s daily meds.  So by this time we are in about December of 2009, Jenna is not quite 6 years old yet, and she is taking 1 weekly injection, 1 bi-weekly (very painful!!) injection, and 2 sometimes 3 daily meds.

The good news is that the Humira worked!!! It cleared her eyes of the Uveitis, she was able to get off of those God awful drops that she had been on since fall of ’08 and she was showing more signs of improvement in her joints. She did have a rough time with infections in her ears, lungs, sinuses, etc. over the course of that winter. I think her body was working too hard at keeping up with the meds.

Her summer of 2010 was fantastic!!! She looked and felt better than she had in 2 years. It was so great to see and it almost felt as though we had a caught a break. Then fall of 2010 hit. I don’t know if it was just the shift in climate, but she started going downhill again. More pain, more fatigue, more frustration from this never ending ride.

Jenna’s meds remain the same at this time. Until she can be symptom free for one year, we cannot try taking her off of them. We are heading into summer again so I have high hopes of another great one! Jenna sees a pediatric PT once a week to help her regain some muscle mass that she has lost due to the JIA. She was fitted today with custom orthotics to correct some issues with her feet and ankles. I believe that after three very long years, we may finally be on the right path. I pray to God every day that we are.

Where do I start???

It's all good news, I just don't know where to start! I feel so behind. Okay so we'll start with lab results. This is something that I had been very worried about, given the fact that she has not had proper labs done in over a year. They....looked.....GREAT! Sedimentation rate is WELL within normal range, WOW. Platelet count is only SLIGHTLY elevated, not a huge concern. The only other thing out of whack was her Alkaline Phosphatase. The rheum nurse explained that in kids it can be high simply based on the fact that they are generating a lot of bone. I'll take it. So, her body seems to be tolerating all the meds AND there apparently is no hidden inflammation. SO, why does she still feel so miserable??
Well, on Thursday she had her first PT session. She seemed to be feeling pretty good that day so I was sure he would think we were nuts for bringing her. Plus she was in one of her, "NO nothing hurts now or ever" moods. *SIGH* But as he was talking to her and checking her out, he was able to somehow by poking around on the back of her knees, reproduce the pain she feels and she admitted that YES, that's it. She then fessed up to her feet bothering her by days end by but that was ALL she was willing to own up to. One of the things he had her try was to stand on one foot and bend down to touch the floor and then stand back up. Most kids SHOULD be able to do this with only slight wobbling. She fell over. Partly goofing off, partly that her muscles are weak. He also pointed out that she has flat feet, virtually NO arch. We had been buying her Keds because she said they were soft and comfortable on her feet. She has always been so picky with shoes. He said they were all wrong for her feet and therefore contributing to her pain. AWESOME. He referred us to a specialty shoe store to have them properly fit her for a well constructed sneaker that would provide good stability. They guy at the store was awesome and we got her some GREAT sneakers! Never heard of the brand, "Brooks", but we will for sure be back for more when she outgrows these! Okay so back to PT. He also discovered that her hamstrings are super tight! She can't straighten her legs except when standing. With all of her hypermobility, her hamstrings are tight?? She couldn't even get into a proper position to stretch them. This will take some work. So we came home with a sheet of exercises to strengthen her hips, thighs and knees as well as stretches to loosen up her hamstrings AND instructions to get her shoes (which we did Saturday). He said he wanted to wait three weeks before seeing her again to see how much progress she could make with better shoes and doing her homework. The exercises are tough on her and the stretches painful but she HAS to do them and we HAVE to make her.
Then on Friday morning I went down to Charlotte to the Arthritis Foundation offices to meet with the person in charge of the Let's Move Together Walk. Our team is not doing so well with getting new members OR most especially with raising any money. This has had me really bugged and I thought for sure I was missing something. I had a GREAT time meeting with Stefani! I left there with some fresh ideas and some fresh energy! I am definitely feeling more positive. It's just going to take some creative thinking. While discussing different possibilities, she mentioned that they would be more than willing to go into Jenna's school to do a presentation and get them involved. I told her GOOD LUCK. Not only have I tried repeatedly and unsuccessfully to get them involved, we can't even get a 504 plan out of them. The more we talked about that, the more outraged she became. Yep. She said they're on it now. Eager to see how this plays out. She suggested 1) Requesting a transfer OUT of that school 2) Contacting a lawyer since what the school is doing is highly illegal. I told her that I would wait and see what happens with the AF contacting them. If they still won't budge, then we will take action. I just left there feeling so good, knowing that we aren't alone. I also left with some great posters, "vintage" AF walk t-shirts, shoe laces and water bottles . So excited about the possibilities! OH, I also left with packs of paper "bones" to sell to raise money! I brought them to our pharmacy and they said they would be more than happy to sell them for us! You know, "Would you like to but a bone for $1 to help support the Arthritis Foundation?" Shyeah! We have some more stuff in the works too. Simply asking people to donate doesn't seem to be working so we are going on to plan B.

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.

We were SO close!!

We almost made it through the entire Winter without any major, fever producing bug of any kind. So close, but not quite. She certainly hasn't had a great Winter. She has had lots of fatigue and pain issues but she hadn't gotten sick. Considering all that has gone through her school and the fact that NC is having yet another crummy Winter, I felt really lucky. Last Saturday she was very clingy, didn't want me leaving her side for any reason, more emotional than usual and just generally out of sorts. I just figured she was more tired than usual. Then Sunday morning she awoke with ...um....we'll just say messy pants. She's 7 now, so....that's certainly not typical. She said her belly hurt pretty bad but that she felt okay otherwise and she really didn't want to miss church. *sigh* She loves church, she cried when I told her I didn't think she should go. She assured me she would be fine. So she went and indeed she did seem okay. She was very quiet the rest of the day though and said her belly still hurt. Monday morning I decided to keep her home given the belly pain, "messy pants", and she had Humira and MTX injections Sunday afternoon. I figured a day of rest was in order. She seemed just fine all day and night so Tuesday morning we sent her off to school. Well, she came home digging in her ear and crying that it hurt really bad. Oh she broke my heart. This is the kid that has pain EVERY day in her hands, legs, feet and God only knows where else. She rarely even mentions that pain never mind cry over it. This was open mouthed sobbing, for HOURS, like, all night long hours. I was giving her Motrin, warm washcloths, nothing soothed her. By morning she had a temp of 103. Aw crud. So I called her peds office first thing. They typically have plenty of "sick kid" appointments. This time they had sick doctors. Aw crud. So they had no appointments and suggested we go to Urgent Care which actually was fine with me since they are literally right up the road. The place was surprisingly deserted when we got there so she was seen very quickly. She saw a nurse practitioner , which again, was fine by me, since I think many times they are way more thorough and have a better bedside manner. She took one look in Jenna's ear and said, "OH YEAH! It's infected alright! It's red, inflammed and full of blisters!". EWWWW! Full of blisters?? OUCH. Poor thing no wonder she was sobbing so hard and long! They had also just done a strep swab. She asked if I cared about the results as treatment would be the same. Nope, doesn't matter. She said it's likely positive since her throat didn't look so hot either. Same end result anyway, antibiotics. I finally remembered to suggest Omnicef on the 1st try. It is the only antibiotic that works for my kids yet it is always the 2nd string med. So, a 10 day course for her to kick this infection in the tail. After 2 doses, plus Motrin and Tylenol piggy backed her fever, which had climbed to 104, finally broke, left and stayed gone! Her belly is still bothering her so she is being very cautious about what she eats and how much of it. She is still even more tired than she normally is. She is resting on her own without being told and is able to laydown through an entire feature length film. That is saying an awful lot for Miss Jenna Bean! So that was Wednesday that we started the Omnicef, it's now Friday and day 3 of no school. She is enjoying being home but she misses school too. I think she will be happy to go back on Monday. If we can finish off Winter with this being her only major illness, I'll call that a success!!

On a small side note, only 26 more days until her appointments at Duke Children's!! I am so happy, excited, eager to get her back in there!

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?

Counting My Blessings

I just feel such a strong need today to count my blessings. It is very easy with a chronically ill child to be angry and hateful. It's something that unless you are or have lived it, you simply can't understand. Most times I wish more than anything that we didn't have to know what it's like. Some days I get very angry with God for doing this to us. I get very angry with the disease for raging through my sweet Beanz body and wreaking havoc on it. Then there are days like today. I know that God has a plan and a purpose for every single one of us. I know that He loves my Bean. He isn't doing this to hurt her or to punish her. Instead it is to use her and me through her. It is my life's purpose, because of what is happening to my child, to educate myself and then educate the world to the best of my abilities. I thank God for that. It has also I know given Bean a strength that she otherwise wouldn't know. It gives her siblings compassion and understanding that they otherwise wouldn't have.

We are also very blessed that Bean, despite all that she does go through, could be much worse. I have been so fortunate to connect with other JA Moms and we all share our stories with each other, many of them now with the world via blogs. A great number of these children still have not found the right med, combo of meds and or dosage of meds. Many of them struggled just to get the diagnosis. Too many of them are having their vital organs attacked either by the disease itself or by the medications they are taking to treat the disease. Some have already had surgeries on their joints and now have more scheduled. Some of them have had to have joint replacement....IN A CHILD! Way too many of them simply cannot get the Uveitis to go away and stay away and now have permanently damaged eyes. Their eyes!!! They are just babies for crying out loud!

So please, take a moment today, and count your blessings.....

In The Eyes Of A Child

Then people brought little children to Jesus for him to place his hands on them and pray for them. But the disciples rebuked them.

Jesus said, “Let the little children come to me, and do not hinder them, for the kingdom of heaven belongs to such as these.”

Matthew 19:13-14

This is probably more for me than you...

I think this post will mostly just be for documentary purposes for myself. Who knows? Maybe it will help someone. Ya never know right? So, anyway, Bean has been battling fatigue for sometime now. She pretty much always tires out more than a "normal, healthy" kid. But lately it just seems worse. And of course with this comes.....IRRITABILITY. Oh yeah, that's a good time. All this week she has been struggling to wake up in the morning for school. Wake up time for her is 6:45 and bed time is 8:00. I don't really think that I could get her to bed before 8 and there is no way to let her sleep later on a school day. So, she struggles to wake up and get herself dressed, she then slides down the stairs on her tush, lays down while I get her meds and oatmeal ready, BARELY makes it through sitting up long enough to feed herself and drink her juice, watching her lift her spoon she may as well be lifting a brick. She then crawls, not walks, crawls up the stairs to brush her teeth and hair and then we are off to the bus stop. We used to walk to the bus stop as it's just around the corner. Now we drive. She says it's too cold on her legs and she just doesn't have the energy to walk there and stand while waiting on the bus. Yesterday at school she wet her pants. Really?? Not just a dribble and then she stopped it. She soaked them and said she had no clue that she even had to go. Gee, tired much? Today I kept her home from school and she has finally admitted that YES, she IS more tired than her "normal tired". But what the heck am I supposed to do? She isn't sick. No fever, headache, tummy ache, nothing. How long do I keep her home for being tired? How long will this go on? I was hoping to get her in to her regular ped today but she is off on Thursdays, of course. Bean's crummy mood is really on my last nerve even though I know that it isn't her fault. I really wish she would just nap instead of being so moody and pissy ya know? If she's admitting that she's tired, than why won't she rest?! *sigh* Pray for us y'all. It's going to be a very long day.