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.

Kids Get Arthritis Too Krew Fundraiser

On May 12th we will join our friends, family and community to walk the Charlotte NC Let's Move Together Walk at the U.S. National Whitewater Center. Last year was our 1st year participating in this event and I can't wait to go back and do it again! For the entire month of April I am running an online Scentsy Fundraiser. As a Lead Consultant with Scentsy I can set whatever percentage of my commission I choose to donate for fundraising events. Seeing as how this is a cause VERY near and dear to my heart, I will be donating 100% of my commission from this online party. Ordering is VERY simple! Simply go to Beanz Buddiez Scentsy, click on "Buy From Party" next to the "Kids Get Arthritis Too Krew", and start shopping!! Browse through ALL of the full size, mid size and plug in warmers, through the campus collection warmers, the patriot collection warmers, the hero collection warmers, the over 80 scents, room sprays, sanitizing hand foams, scent circles, scent paks, Scentsy Buddies and baby buddies, and do NOT miss the new Layers line!!! Should you have ANY questions on any of this please reach out to me at amy.cunningham5@gmail.com.

A new day....a new diagnosis....

For quite sometime now, I don't even know how long, I have been worried about Jenna's emotional well being, her mental state. She will say things like "I hate my life, I hate myself, I don't know why I was even born, No one loves me, I have no friends, I'm all alone". She told me the other night that she is sad every day. Not necessarily all day, but most of the day, every day. She is just a little girl, that's too much! I finally broke down and called her pediatrician. That was a big step for Mama, it meant admitting something is broken and needs fixing. I went in to today's appointment thinking to myself, "she just has a lot to deal with, more than most kids, (2 chronic illnesses, daily meds, weekly injections, being apart from her big sister, etc) we'll just get her some counseling to work through it all and she'll be right as rain. Well.....not quite how it all went down. She asked a series of questions, such as "Is she picky about her clothes? Is she picky about food? Is she picky about her surroundings?" I'm thinking to myself, "What the heck does this have to do with anything??" I tell her how Jenna (I didn't want to say she is mean in front of her) is not exactly nice to her friends, that she is bossy with them. The doc says, "Well how do you mean? Is it maybe more that she is controlling?" Well....I suppose so. "Does she not like being touched or handled physically?" Ooooooooh no!!!! You cannot touch Jenna, ever. At this point I can't even remember all of the areas of day to day life we covered. She eventually tells me that while she thinks Jenna could for sure benefit from some counseling to help learn to identify her emotions and learn how to cope with them, what she feels will help the most.....is.....OT to help with Sensory Processing Disorder. I'm sorry, say wha?? Really?? She explained that we ALL have sensory issues to a certain extent. Such as fabrics we don't like, foods we don't like, sounds or smells that bother us, but WE can cope and adapt. I child with SPD cannot. It can send them into a fit of rage, cause a major emotional meltdown, cause them to shut down completely, etc. Ooooooh, Oh, I see..... She said most kids will innately know methods of coping. BUT, most of them are physical. Such as carrying heavy objects, moving about fast and furious, covering their bodies with lots of heavy blankets, squeezing their joints. ALL of these things are likely causing her pain (because of the JIA) which in turn will cause another meltdown, another shutdown, another outburst, not necessarily in that order. The more that we talked, the more everything became clear to me. She has likely had sensory issues since birth, most people do. But given everything else she battles, SPD has developed from it. She can't control her reactions to certain things. This pains me. PAINS ME. The turmoil within her is so much more than I ever could have imagined. My heart BREAKS for her. Her doctor said that likely, we will NEVER rid her of all of this. But, with some counseling and OT we can hope to get rid of SOME of it, and help her to cope with what's left. As I was leaving I texted a friend to tell her what happened. We are so close in our hearts, that she automatically knew how I was feeling. This is word for word her response, "One thing I thought of when ____ was given the asperger dx is that he is still the same boy he was yesterday before the 'label'" HOW TRUE?! She is still Jenna. Nothing has changed. Her heart is still hers and it is BIG. So we are off on another adventure her and I. Another war to wage, another battle to be fought, another mountain to climb. And wage, battle, fight and climb we will!!!

Ephesians 3:19-20

New International Version (NIV)

¹⁹ and to know this love that surpasses knowledge—that you may be filled to the measure of all the fullness of God. ²⁰ Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us,

AWARENESS

It still continues to shock and amaze me, nearly 4 years into this, that people don't understand autoimmune diseases. I can't really blame them. If not for Jenna, I probably wouldn't understand either. That's why I am so very grateful for the International Autoimmune Arthritis Movement. Their SOLE purpose is to educate the world about these often misunderstood diseases. They are "staffed" with volunteers who work tirelessly and diligently. Thanks to them, hopefully one day we can all look back and say, "Remember when........"

Defining "Hardship"

hard·ship

 noun \ˈhärd-ˌship\

Definition of HARDSHIP

1

: privation, suffering

2

: something that causes or entails suffering or privation

I guess that overall, Jenna is one of the “lucky” ones. Her diagnosis of Juvenile Arthritis not only came at a young age, but it also came quickly. By being diagnosed so young, she really doesn’t even seem to realize that she is in any kind of pain or discomfort. It has become a way of life for her. Being diagnosed so quickly means that we were able to get it somewhat, not entirely, but somewhat under control before any serious damage could be done. That being said, isn’t that in itself a hardship? Being a child and not knowing a comfortable, pain free day? Of course she has all the typical hardships that any child with JIA suffers. The weekly injections, monthly blood draws, numerous visits to doctor’s offices, missed school, not being able to keep up with friends, needing to drop out of sports, being “different”.  But Jenna’s biggest hardship is being without her big sister.

You see, we were living in Maine when Jenna was diagnosed in 2008. Maine is one of many states in this country without a pediatric rheumatologist. In the beginning we were taking her to an adult rheumatologist that was willing to treat children. Being new to the disease, we thought that this was acceptable. Arthritis is arthritis, right? WRONG.  I am so fortunate that I “met” so many wonderful JIA Moms online. They “schooled” me on the importance of Jenna seeing a pediatric rheumatologist. The differences in adult arthritis and juvenile arthritis are so vast that unless specifically trained, there is no way to effectively treat the child. Her adult rheum said that he knew a fellow at Duke Children’s Hospital and he would speak to him about getting Jenna in there. Would we be willing to move? Or choices were as follows: Stay in Maine and travel to Massachusetts every time she needed to see the rheum, which at that time was every 3 weeks. Continue having her treated by the adult rheum, and watch her deteriorate. OR, pack up and head south. For us, there was no question. We knew that we needed to have her seen at Duke. They are renowned as some of the best in the country. It is a long and complicated story, but my oldest daughter was left behind with her Father in Maine and we still, nearly 3 years later, do not have her with us.

So, imagine if you will, being a 5 year old sick little girl, scared, in a new city, a new state, new school, new home, new friends, new doctors…..and not having the love, guidance and support of your big sister. That is Jenna’s biggest hardship. She is going through this fight without her best friend by her side.

It's "JUST" Arthritis, It's Not Serious

Allow me to paint a picture for you, please. If I do this right, then you will never utter the words, "It's just arthritis, it's not serious", ever again.
Friday night in our house is "shot night". Nope, not talking about pouring my favorite liquor into a tiny glass and tossing it back. I'm talking about injecting our youngest child with toxic medications in order to attempt to control her chronic illnesses and stop them from destroying her body. That in itself is a horrible position for a parent to be in. Which is better? Taking our chances with the diseases destroying her? Or take our chances with the medications destroying her? Hmm....what would you do if it was your child? I pray that you never have to face that decision.
So, back to shot night. We do this every Friday. We have been for the past 4 years. But it's not just Friday really. The countdown starts as soon as the injections are done. 7 days, 168 hours, until we have to do this all over again. The stress and anxiety is every day because you know it's coming around again. There is also the daily reminder of the injections thanks to the daily meds she has to take to attempt to counteract the side effects of the injections. Though those don't always work so well. Then the alarm goes off on Friday letting you know that it's time. You get the med basket out, prepare the syringes, have your child get her comfort items and get in her favored "shot spot". All the while she is crying, begging you to please not do this, please not hurt her, asking you WHY are you doing this to her again. Now it's time, everything is ready. In our house, Daddy does the injections, Mommy does the hand holding and soothing. Every week another chunk of my heart breaks listening to her screams, seeing the look of absolute terror all over her face as the medicine goes into her and burns like acid. I hate it. I hate everything about it. The real kicker is that despite these medications, she still experiences periods of pain, stiffness, discomfort. You know how your body feels when you have the flu? That feeling of, "Man, I feel like I've been hit by a bus.". Yeah, imagine being a child and LIVING with that feeling.
Still think it's "just arthritis, nothing serious"?

It's a Fundraiser!!!

A big thank you to my wonderful friend and neighbor Michelle for this! Michelle is a Sr. Director with the direct sales company Thirty-one. This is an AMAZING company based on the Proverbs 31 woman and they sell amazing product! They are also a company that likes to give back and that is exactly what Michelle is doing. I can't thank her enough! Details on the fundraiser as well as contact info for Michelle are below. Please share this info with everyone that you know! Thanks so much and happy shopping!!