Rare Disease Day 2015

Norah-3Norah-2Norah-1Rare-Disease-Day-webAs many of you know, my middle daughter Norah has a Mast Cell Disorder. We've actually had a pretty rough few weeks with it, for seemingly no reason, which is always frustrating.There is no cure for this, yet, and like so many people effected by a Rare Disease, we get through day by day doing what we can. I know we are not alone in this! So this year, with Rare Disease Day coming up, I'd like to help share your stories too. I'd love to start a blog circle that links all of our stories together. If you have a blog that you keep up with you or your child's Rare Disease, leave a link either here or in the comments on Facebook and we'll come together to share these stories.

Norah's life is effected in every single way by her Mast Cells. How we eat, clean, play, school, worship, make friends, travel, sleep - Every single part of her life is carefully considered and I know from experience that load can be too burdensome to carry alone. Due to lack of research, funding, education and many other things, many of these diseases have no cure, and are not recognized by the general population (and often Medical Community at large). This Feb 28th, let's make our voices heard as we support those living with Rare Diseases.


Burke-1Last night my middle daughter, Norah, had another severe allergic reaction.This isn't something new for her, and I doubt it will be the last time we go through this due to her mast cell condition.

After dinner we noticed her face had hives so we gave her Benadryl. As I put her to bed, she was unable to breath without coughing so we moved her downstairs to keep an eye on her. As the hour passed, her lips began to turn purple and swell, more hives showed up, and then her ears started to swell. Our epi pens have just become unusable and we were playing the "when to call the ambulance game" (parents with allergies probably know this game all too well) since the nearest hospital is an hour away.

I asked our good friends to pray for her as Eamon was on the phone with 911, and Norah's eyes started rolling in the back of her head. I sat her up, prayed, and remembered what I've been studying in my bible this week.


Jesus had a cousin who went before him, preaching of His coming, John (John the Baptist). At this time, John was imprisoned because of his prophesying to the people in the dessert who came to see him. He was locked away doing what was good, for the advancement of the kingdom. He had sent out some of his friends to go to Jesus and see if it was really Him. He told them

"Go back and report to John what you hear and see:  The blind receive sight, the lame walk, those who have leprosy are cured, the deaf hear, the dead are raised, and the good news is preached to the poor. Blessed is the man who does not fall away on account of me."

You see, Jesus was quoting scripture from Isaiah, confirming that He was the Son of God, but I think He ended this report of miracles with the phrase "Blessed is the man who does not fall away on account of me." because He knows our hearts.

The Jesus I know is about healing, about freedom, about life, and yet, here is someone who is dearly beloved to him, beaten, imprisoned, and ultimately beheaded for his service to The King. He knew John's heart was tender. He knew how fickle the human soul can be, to take offense to it's creator, to lose faith.

Having a child who is "sick" gives me plenty of opportunity to be offended with my God. To say "Why us? Why her? Is *THIS* fearfully and wonderfully made?!" Yet I have come to trust in the power of my God. I have tossed aside the lie that "God won't bring you to anything you can't handle" because it is a misquote of 1 Cor 4:13

"No temptation has overtaken you but such as is common to man; and God is faithful, who will not allow you to be tempted beyond what you are able, but with the temptation will provide the way of escape also, that you may be able to endure it"

And last I checked, sickness isn't a temptation. Our God is going to protect us from personal sin. I know that, as Isaiah 45:5-7 says "“I am the Lord, and there is no other; Besides Me there is no God. I will gird you, though you have not known Me;  That men may know from the rising to the setting of the sun That there is no one besides Me. I am the Lord, and there is no other,  The One forming light and creating darkness, Causing well-being and creating calamity; I am the Lord who does all these." And I know He is good. And as Beth Moore said "He cannot do good for himself and harm to His children."

We hear the sirens coming down the highway and Norah tells me "I love you, mommy. I so sowwy I having a 'action'." And I want to cry, but I assure her it wasn't her fault. The paramedics walk in, and she doesn't make one squawk. Not one cough, not one grunt. Just talking like "Oh hey guys, what's up?" The swelling in her lips subsides, her hives start to lose their heat and size. Over the next few minutes the EMTs note how much better she's doing. But it's not like we called too soon, this reaction had been going on for about an hour and a half with no signs of getting better. And my God showed up. There He was, so sweet to us.

Last night in between creeping back into her room to make sure she was still breathing, I had the thoughts "What if next time the reaction is too fast? What if she ignores the signs as an adult? What if, what if, what if..." And then I thought about John the Baptist. This eternal life that he spoke of, that he was sure of. The freedom, the healing, the joy, HE RECEIVED IT ALL when he met his Father in heaven. See, The One Who Made You knows that His ways are hard. As unbelievers, it keeps us at a distance from him. As believers, I think we become even more offended when God doesn't "behave" like we think He should. It is my job to protect, and love, and teach Norah for as long as I have her, but if that day comes, and I lose my baby, though she has not accepted Christ as her personal Lord and Savior, I know she will run to Him on that shore, like all of the little children of Israel, and hug Him as He welcomes her home. And I will not be offended by Him.

About Itchy Sketches

So... a few weeks ago when I said "Y'all go look at my new Etsy shop!!"And y'all were like... "Sooooo, where's that Etsy shop???" And I was all "...*crickets*..."


But, like with so many other things this year, I let my big girl self get ahead of what I really needed to do for my family. As more and more people sent me inquiries (not orders) I panicked. "WHAT am I thinking adding another business to my load?" The expense of packaging, shipping, and added stress of maintaining yet another feather to my cap, is just not worth it. I faced the same dilemma about a year ago when debating whether or not I should sell essential oils (even though we are avid users due to Norah's condition).

Mama, behind this screen, I'm looking right at you. That thing that you love, that thing that you are passionate about, and (let's be real) that thing that could help y'all make that extra money that you could really frikkin use - you can turn it into a successful business - but you don't have to.

There are things that can be just for fun. Things that can be just for you. Things that can bring a smile to another's face and even closer to the Lord. But in a world that has pushed me to try and squeeze every last dime out of my talents, I'm here to tell you, it's okay not to.

So with that in mind, I quickly closed down the shop, before any non friends ordered and I got in over my head.

And I've been sitting here ever since debating what I should do.

These little sketches of verses have been my companions through my insomnia riddled nights. The verses themselves have offered comfort and hope to the situation with our sweet Itchy Kid, Norah. And, c'mon, they're a bit cute and some of you even seemed to like them.

The other side of this is Norah herself. The last talk we've had with the doctors came to this conclusion - we are taking care of her too well. Funny, right? In order to receive a diagnosis of mastocytosis, we would have to basically stop preventing her from all of her triggers, and expose her to things that make her go into shock, to test the level of mast cells. If you've ever seen her in shock... You'd know how scary this is to me as her mama. But on the bright side, we are doing everything right *if it is masto* SO do we go after this diagnosis or not? It's something we are still debating. But there are very important emergency medications and a few other medical expenses that have to be taken care of. Who knows, maybe one day, we can get her a dog that can sniff out when she is about to have a reaction.

So here is what I've done. Instant Downloads. More than money, we need prayer for our sweet girl. Prayer that there will one day be a cure for her. Prayer that we will have the wisdom and energy to be vigilant in keeping her safe. Prayer that we seek her salvation even more than we seek healing for her body. And maybe, buy purchasing one of these images, you can check your phone and see one of those verses in the background and pray for her. Or maybe you get one printed out and hang it in your little's nursery. Or maybe you'll make little cards to encourage your friends. That's totally up to you.

So head on over to the shop and check it out if you haven't already. This new approach will make it a ton easier for me to add new prints regularly so be encouraged, and check back often ;]