Blog with a purpose

When I started this blog my goal was to raise awareness of Hirschsprungs so that others would not leave the hospital with a newborn undiagnosed. I wanted people to know what this disease is, how to recognize the symptoms, and encourage people to be an advocate for their children. Deep in my heart I knew that God wanted me to write this blog. I doubted my self and wondered why people would wanna read a blog about poop and how would this help others. I decided that it didn't matter. People could choose to read or not. Some may not even understand but thats ok because God asked me to do it so I did. I told myself that even if it helps one person then its worth it. 

Fast forward to yesterday...

My phone and facebook started blowing up with texts and voicemails asking me if I knew "so and so" because their newborn son may have Hirschsprung's disease. It kind of made me giggle. Poop is what I'm known for I guess. The cool thing is that a lot of people may have never even known about hirschsprungs had I not written my blog. The mom of this boy told me she had actually read my blog a few months ago! Now, I don't really know this couples full situation yet but how cool is it that God knew this family would be going thru this and he cared enough to put things in place beforehand?! I don't know how I can help them being so far away but sometimes its just nice to know someone that has been thru it:) 

This has also stirred up some emotions for me. The whole process of getting a diagnosis was extremely frustrating and annoying. I feel for this family. Part of me wants to say, "you will be fine because your son didn't have to wait 6 years like mine did!" But then I remember how annoying it was to have people compare their medical experiences with Greysens. Its not that people don't care but each situation is unique and to compare them is just not possible. I would even go farther to say that this is especially true with Hirschsprungs because each individuals response to treatment is VERY different. Some kids have the pull-thru procedure and are completely normal afterwards. Others may have the procedure and continue to struggle with various issues (like Greysen). I've developed a way of thinking when someone is undergoing a medical crisis and its something like this:

#1-Their experience is not mine

#2-Their experience is real and its most important to them in this moment

#3- There is always someone who is more sick than your child and someone who is more healthy.          Neither of these discredit what YOUR child is going thru. 

#4- Do not talk about your experience unless asked. Its just annoying and makes people feel like their situation is less important. 

And lastly some advice for friends and family:

#1- Do not call or text everyday asking if the results of the biopsy are in (Or any other results for that matter.)

When Greysen had his biopsy we were told the results would be back in 4-5 days. It took 2 weeks! 

If a person says they will let you know the results as soon as they know then they probably will. Especially if you are family, I doubt they will forget to inform you:) It's stressful enough waiting for the results so don't add more stress for them!

#2- don't talk about the time your grandma had heart surgery or your child had surgery (again, unless asked) And definitely don't start that conversation with "We know exactly what you are going through..."

 While you may be able to relate to their situation you have no idea what they are going thru because every person responds differently in these kinds of scenarios. Some people may be freaked out while others may be cool and calm. Personalities play a huge part in dealing with a crisis. 

#3 DO send them visa cash cards/giftcards

When a child is in the hospital its expensive! Kyle and I ate as cheaply as we could and it was still about $30-40 a day to eat in the cafeteria or head across the street to Panera. My good friend Jessica and her mom gave me a $50 visa card and it was the biggest blessing. I spent every penny of that card with a grateful heart. My other good friend Erin gave me a starbucks card. Coffee is what kept me going! I was so grateful for those gift cards and everytime I used them I was reminded of how loved I was:)

And lastly if you don't know what to do just pray! Or ask them what they need. Offer suggestions of how you would like to help and really mean it when you offer. Sometimes its nice to call a person  and not feel bad saying "Hey a meal would actually help us out a lot!" And if you don't know what to do just ask:)