{"id":401,"date":"2015-10-29T19:10:13","date_gmt":"2015-10-29T19:10:13","guid":{"rendered":"http:\/\/jeneration.net\/?p=401"},"modified":"2016-02-29T19:12:26","modified_gmt":"2016-02-29T19:12:26","slug":"dear-julianna","status":"publish","type":"post","link":"http:\/\/jeneration.net\/index.php\/2015\/10\/29\/dear-julianna\/","title":{"rendered":"Dear Julianna"},"content":{"rendered":"

This is an open letter to the little girl from CNN who her parents say has chosen going to Heaven over the hospital the next time she gets sick. The article is available at:\u00a0http:\/\/www.cnn.com\/2015\/10\/27\/health\/girl-chooses-heaven-over-hospital-part-2\/index.html?sr=fbCNN102715girl-chooses-heaven-over-hospital-part-20342PMStoryLink&linkId=18289967<\/a><\/p>\n

Dear Julianna,<\/p>\n

You are beautiful, sweet, funny, witty and a little sarcastic. A lot like me. Also like me you have a form of muscular dystrophy. And also like me, you\u2019re experiencing some of the sometimes not-so-fun things that your disability causes like weakness and having to wear your BiPap A LOT and doing respiratory treatments.<\/p>\n

I know sometimes these things can be a downer. I\u2019ve been there. I know what it\u2019s like. Your mom mentioned you do your treatments twice a day. When I was a little girl, and even sometimes now at the age of 34, I did those same treatments at least four times a day. I did them even more if I was sick. Except for the Cough Assist, they hadn\u2019t made that yet, but I do use it now and really, it\u2019s my best friend. And there was a time when I was a little girl that I had to wear my BiPap all day. Sometimes I couldn\u2019t even take it off for 10 minutes.<\/p>\n

Believe me when I say that I know these things are kind of an annoyance and aren\u2019t necessarily fun, but just as it appears that you do, I made them fun with making noises, singing songs and being silly. My nurses used to call me Underwear Head because when they first created BiPap, it looked like underwear on your head. How silly is that?! They have definitely made it more fashionable!<\/p>\n

Speaking of BiPap, we go way back. I was actually the first patient at my Children\u2019s hospital to use it. And because it helped me so much, eventually so many kids just like you and me started using it, too. If I didn\u2019t wear my BiPap so much when I was little, I wouldn\u2019t have the fun and good life I\u2019m enjoying today.<\/p>\n

I also know that going to the hospital isn\u2019t exactly everyone\u2019s idea of fun. I know the doctors and nurses sometimes do things we don\u2019t really like or want to do. But, these things are just things we have to do so that we can grow up and live fun lives as adults. And sometimes the hospital can be fun, even when you have to do these things and when you\u2019re not feeling good. I had a lot of fun in the hospital with the doctors, nurses, respiratory therapists, the child life people, the secretary, the librarian\u2026and even the housekeepers. I played games with them, did arts & crafts, sang songs\u2026 I even pulled practical jokes on my doctors (with the help of nurses) like squirting them with syringes full of water and putting a bucket of confetti over my hospital room door. I still laugh about these things today.<\/p>\n

I want you (and your parents) to know that I struggled with my health as a little girl. \u00a0Sometimes I was very, very sick and honestly sometimes scared. It\u2019s ok to be scared. When we\u2019re scared we learn to be tough and to get over our fears and then we won\u2019t be scared anymore. Sometimes my parents were told I was too sick and that I was going to die. I can\u2019t begin what to imagine what it\u2019s like for parents to hear that. But my parents were (and still are) believers. They believed that I was strong, that I would get better and get to go home so I could play with my brothers, my friends and my dog and cats. My parents gave me a chance to prove just how strong I was in my petite and fragile body. And because they believed and gave me a chance, I\u2019ve done many things in my life and am having a fun, good life.<\/p>\n

As I started to grow up, I became stronger in some ways. I stopped getting sick as often and as bad. I stopped having to go to the hospital as often. In fact, I recently went 14 years without going to the hospital. And I rarely ever get sick. My body and health did exactly what my diagnosing doctor said I would. My mom was told that I was going to be really sick for awhile. There were going to be times when it looked like I was going to die. But, if given time and a chance to be strong, I could live and if I lived through these really sick times, I was going to be ok. I was going to be just fine. Today at the age of 34, I\u2019m ok and I\u2019m having lots of fun being just fine.<\/p>\n

I want you to know that you don\u2019t have to go to Heaven\u2026 not anytime soon. Maybe not for a really long time. Just because you have a form of muscular dystrophy that doesn\u2019t mean you\u2019re going to die anytime soon. You could live to be as old as your grandma. Your disease isn’t killing you. You have so much life ahead of you. So much still to do and see. You can do anything you set your mind to, sometimes it just takes some creative thinking and extra effort to figure out how you\u2019re going to do it\u2026 but you can\u2026 and you can go anywhere your little heart desires, just pack up your machines and supplies and go. They can go anywhere you want to go! I graduated high school, then college (twice even). I\u2019ve had jobs since I was 16 and today I own my own business. I\u2019ve been to 11 countries as of today and many states, and have so many more I want to go to. I\u2019ve gone swimming with dolphins. I\u2019ve swam with a sea lion. I\u2019ve played with monkeys. I\u2019ve been on a Mayan Ruin. I\u2019ve gone ziplining not once, but three times. In high school I played soccer, hockey and softball. I still play hockey. I\u2019m not married yet, but someday I will meet my Prince Charming and live happily ever after. I like music and dancing, dressing up and being pretty, I like to see movies and go shopping and out to eat. Oh, I\u2019m a princess, too. I was Ms. Wheelchair Minnesota \u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0\u00a0 USA and got to wear a sparkly crown and a pretty sash and pretty dresses. You could be a Ms. Wheelchair one day, too!<\/p>\n

Sweet Julianna, you can do all of these things and more. Please know that. Don\u2019t give up on the life you were blessed with. You may not understand it now, but God gave you this life for a reason and someday when you\u2019re older it\u2019ll be clear why. Giving up on yourself and quitting is one of the easiest things in life that you can do, but that doesn\u2019t mean that you should. The best things in life are yet to come and are worth fighting for. I promise you that. Heaven will be there for you one day after you have lived a full life and have made so many memories, have worn so many smiles times infinity and have laughed over and over and over\u2026 and when you go there years from now, I’m sure it will be great.<\/p>\n

I so wish and hope to see you choose to grow up into a beautiful young lady!<\/p>\n

Hugs & Kisses & Lots of Well Wishes,<\/p>\n

Jen<\/p>\n","protected":false},"excerpt":{"rendered":"

This is an open letter to the little girl from CNN who her parents say has chosen going to Heaven over the hospital the next time she gets sick. The article is available at:\u00a0http:\/\/www.cnn.com\/2015\/10\/27\/health\/girl-chooses-heaven-over-hospital-part-2\/index.html?sr=fbCNN102715girl-chooses-heaven-over-hospital-part-20342PMStoryLink&linkId=18289967 Dear Julianna, You are beautiful, sweet, funny, witty and a little sarcastic. A lot like me. Also like me you have […]<\/p>\n","protected":false},"author":1,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[10],"tags":[],"class_list":["post-401","post","type-post","status-publish","format-standard","hentry","category-blog"],"_links":{"self":[{"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/posts\/401","targetHints":{"allow":["GET"]}}],"collection":[{"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/users\/1"}],"replies":[{"embeddable":true,"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/comments?post=401"}],"version-history":[{"count":1,"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/posts\/401\/revisions"}],"predecessor-version":[{"id":402,"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/posts\/401\/revisions\/402"}],"wp:attachment":[{"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/media?parent=401"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/categories?post=401"},{"taxonomy":"post_tag","embeddable":true,"href":"http:\/\/jeneration.net\/index.php\/wp-json\/wp\/v2\/tags?post=401"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}