Here are a few things you need to know. I tried to break it down from the start to now. You didn’t know that being born with a cleft lip and palate would bring some difficulties for you. You started out with surgeries. You also got made fun of at school for having a weird nose and mouth. You didn’t know you would get really insecure about it as you get older. You will reach a point though when you don’t really think anything of it. Although it’s going to cause you dental problems also, it’s nothing compared to more surgeries. The good news is that even when you get older you won’t really remember any of this stuff that happened to you as a baby, but unfortunately your body is going to remember all of this trauma from all the surgeries.

You also had a lot of energy. You used it for all it was worth. Playing with toys, running around at full speed, playing sports. You didn’t realize it then, but in the future you will lose all of this energy you had. You will struggle to get through the day fighting to not take several naps. You will still smile big and you will get to keep your curly hair! This may sound scary to know you will lose this one day, but you are going to have a lot of support from friends and family. Just to warn you ahead of time, you will be questioned by doctors and friends and people you don’t know. You are going to have an invisible illness meaning you don’t really look sick on the outside. It’s okay if you’re freaking out a bit. Just know in the future you will be fighting to raise awareness and you have a whole lot of people behind you.

Dear High School Abby,

You will enjoy dances throughout your high school year. You will enjoy homecoming dances, sweetheart dances, semi-formal , and prom. I want to tell you 2 things that you need to hear.

1. Don’t be mad at yourself when after the dances your legs burn and you feel like crap. Being a teenager it is only natural to of course chalk it up to – I’m not running or working out enough. I’ll add more to my week. Please don’t do that. Don’t rip your self worth apart. You will later learn in life that it wasn’t because you were out of shape. You were active and worked out a lot. The reason you got so tired, felt like you had the flu, and your legs burned is because one day you will diagnosed with Fibromyalgia and POTS and those both probably were starting to flare-up then. You didn’t think it was a big deal. But you aren’t crazy.
2. Don’t be upset that you never had a date to any of these dances. You wished you could’ve had a boyfriend, and you questioned every single day what is wrong with me? Please know life doesn’t revolve around having a boyfriend. You can still go to dances and have a great time with your fun friends. It doesn’t make you “cooler” and it doesn’t mean you’re ugly if you don’t have a boyfriend. You will realize that you need to just live in the moment and God has your whole life in his hands. You can be an independent women and you will have an awesome girl gang! Your best friend and you will create so many fun memories together because you enjoyed making memories and living in the moment.

You love to golf and you will play all through middle school and all through high school. Although your senior year of golf you won’t be able to play. You only got to play 3 matches I think. You are going to have an ovarian cyst that needs to be surgically removed. Recovery was supposed to take 2 weeks. It is going to be rough on your body. You are going to have to end up withdrawing a trimester from high school and you won’t be feeling well enough to golf any of your senior year. You will deepen your faith during this difficult season. You love golfing but I know on those hot sunny days you don’t feel good. I know 18 holes were almost too much for you. You lived on protein snacks and gatorade and water. Again, you are not out of shape and you are not being a baby or a wimp. You actually have a sun sensitivity and you don’t tolerate warm temperatures.

You will show holsteins for 10 years in 4-H. You got tired easily and show day took about everything in you. You just kept pushing through because you loved these animals and you loved 4-H. Again later in life you will get some answers on why this was hard on your body. I want you to be so thankful for this opportunity you had and to really savor those moments. You will walk away with great friends, and great memories, and all of the lessons you learned while being in 4-H. Somedays when you’re having a rough day you will look at old pictures of you showing because one time you were strong and you worked hard. So keep these photos close to you.

I really don’t want to write this part of the Dear Younger Abby. I want you to take a deep breath before you read this. When this picture was taken you were happy. You are planning on commuting to a local college for a degree in elementary education. You will realize in October/November that you aren’t enjoying college and you were getting sick a lot. You are going to keep this secret to yourself because you think you should give it another semester. You worry about your future without a college degree. You are going to worry what others think of you. But let me tell you God doesn’t plan to harm you. You will later realize with your health that being a full time teacher wouldn’t even be realistic, and you would’ve had to drop out of college when you were farther in and doing hard work. You don’t have to have your life all figured out when you are 18. I am 24 now and while I don’t plan on going to college you never know what my life could be like in 10 years. Anyways I have been trying to avoid this next line. You probably won’t even believe me when I tell you that 5 months after this picture was taken you will go outside and find your Dad. Except he isn’t just laying down to rest. You realize your Dad isn’t breathing and as soon as you see the color of his face and lips you know. You will start pleading with God to please bring Dad back home. You will scream for help and call 911. You will have neighbors and complete strangers working on a neighbor’s fence come to you and help you process what is happening. You won’t realize what this trauma is going to do to you in a few years. It did help to hear from the doctors that even if I was outside with Dad there was nothing I could’ve done. He had a rare heart condition and his heart was so bad that even a heart transplant wouldn’t have worked. You won’t be able to ever get rid of the image of when you find Dad. You will have so many great memories of Dad though. Your community and family members, and friends will lift you up in prayers and support. You will realize how precious life is. You will later develop PTSD and this will be huge trigger for your health, you don’t know it yet but you are going to embark on a long and complicated and isolating journey for a diagnosis.

You will go on a healing vacation in 2015. You will go out East with your Mom and sister. You hiked up to a location called “Bubble Rock” in Acadia National Park. You realize during this vacation that walking in New York, hiking in Maine, hiking up a waterfall on the Kancamangus Highway, etc that you are lagging behind. You are trying to keep up. Again you will later find out that you will get a diagnosis that will explain why you couldn’t keep up. (cue the POTS & Fibromyalgia). After this trip you will get really bad tendonitis in one of your fingers. We thought it was from all the lobster cracking you were doing in Maine or that you somehow injured it hiking. Doctors thought it was broken but it wasn’t; it cleared up but you never really got answers on what or how that happened. You will however treasure all of these memories on this trip and you are so thankful that you were able to do this. You also got a lot of healing from Dad’s death.

I know this may be a lot to comprehend. You will be using a wheelchair, a scooter, and a walker. You have some difficult roads ahead of you. You will still be searching for a diagnosis 3 years later. You will start a blog to raise awareness and advocate for others. You will eventually move into a brand new home that is completely ADA accessible, your church and community will help make this possible. (PS this picture is at the new house). You have dealt with a lot. You will have rough days physically and mentally, but you will eventually pick yourself back up. You couldn’t do this without family and friends and working at a job/place you love. You take each day as a blessing and enjoy the moments in a day that you can. You will be restricted and a lot of independence will be taken away. You eventually will come to terms with it and you will learn how to cope with that.