Happy Birthday Ruthie

Dear Ruthie, Oh my sweet Ruthie. We had no clue how much our lives would change when you were born. You have always had a sparkle in your eye. You've always wanted nothing more than to be a part of whatever your big sisters are doing. You are a ball of energy. You are a 3rd born who thinks she's a 1st born. You have always been tiny but you have a huge personality. You have zero filter. You are rough and tumble. You aren't scared of much but when you are worried about something you commit to being 100% terrified which always throws me for a loop because its so out of character for you. You are a wonderful big sister and you are pretty sure you aren't a "little" sister. You love roller skating and baby dolls and basketball and being girly. You have strong opinions and aren't afraid to voice them. You are an amazing advocate for yourself. You are fiesty and snuggly. You give big hugs when you're happy (and we're all really glad you no longer bite people when you're happy!). You fall apart when you're tired. You still suck 2 of the fingers on your left hand and drag "pillow" around everywhere you go. You like to be in charge. You love arts and crafts. You are capable of handling whatever problem arises. You are fiercly independent. You are perfectly you and I wouldn't want you to be any other way. This year you finished virtual school and went back to brick and mortar. You got glasses and your reading skills took off! I am so glad you love to read now. You have loved being back in regular school. You have made some sweet friends and really like your teacher. This year you were on big swim team for the first time (you were on mini team when we were in Columbia) and you rocked it! I was so proud of all that you learned this year. You made some great friends and worked so hard on your strokes. This year you got to go to Roper Mountain camp for the first time. You did the farm camp and had so much fun. This year we learned you were allergic to cats and shellfish. We were all shocked by the shellfish allergy. When you had a reaction we thought it was an environmental allergy you were reacting to but you were positive it was the shrimp. Because apparently you had issues with shrimp for a while so you just stopped eating it. Because Ruthie can handle it by herself! As of now you have been in OIT maintenance for your peanut allergy for 2.5 years and I am so proud of how well you handle your daily dosing and I also love how much you love all things peanut/peanut butter! This year you went skiing for the first time and loved it. You are looking forward to going again this year. We also went to the beach, Dollywood, and Washington DC. Ruthie I absolutely love you and your mix of sweet and fiesty. You are a force to be reckoned with. You are an incredible blessing in our lives and I am so thankful that I get to be your mom and watch you every step of your journey. I can't wait to see where life takes you! Love, Mom

Dear Emerson

Dear Emerson (because this year you decided to be Emerson instead of Emmie), Happy Birthday sweet girl! There is no way that 12 years ago I could have predicted what life would look like now. Actually, now is not far off from what I would have pictured. It was the in between years that I would never have guessed. Those really hard years...long before we got to the years that are supposed to be hard. But now I feel like we're finally on the other side. And I know there will probably be some more hard years (I mean we haven't even gotten to teenage years yet!) but there is a feeling of empowerment and confidence that comes with making it to the other side of really hard things. I hope yoou feel that confidence. A part of me hopes that you don't remember much of the hard years when you were having seizures and on strong medication. But another part of me hopes you remember those years and remember that you fought through and you made it to the other side and that you are stronger because of it. A year ago I could not have predicted what life would look like now for you. I had hopes and dreams but I didn't even dare to hope too much. A year ago you were getting ready to have an EEG to see if you had outgrown your seizures, you were doing virtual charter school, and you had just switched from dance to soccer. This year you are seizure free and off off all your medications, you are back in in person school and this fall you finished your 3rd season of soccer and constantly ask me when it's time to start back! Back at the beginning of the year you had your EEG and we were told that you could come off of your seizure medications. I think we held our breath for many months afterwards waiting for the other shoe to drop but I am so happy to say that you have continued to be seizure free. There has been such a difference in your processing and brain clairty now that you are off meds and not having seizures and it makes me so happy for you. At the end of this past school year we talked a lot about you staying with the virtual charter school for 6th grade. You were adament that you wanted to go to in person middle school so off you went! I was very nervous and the beginning of the school year was definitely really, really hard. But we got things figured out and now you are rocking it. You always have worked SO hard in school and in general you would work and work and work and still struggle and feel like you weren't good enough. But this year all your hard work is really paying off. I love the smile on your face when you get in the car and tell me that you made a good grade on a math test (your hardest subject), or that you got to do something extra because you were all caught up on your work. I have seen your confidence soar this year and it makes me so happy. I was so worried that you would be overwhelmed and have major struggles when you not only went back to regular school but also started middle school at the same time but you have adjusted so well! I am proud of you Emerson Jane...you can conquer anything if you put your mind to it and I know you are going to do BIG things! Just over a year ago you decided to take up soccer. You have loved it from day 1. It has definitely taken some time for my sweet little dancer to get some competitive spirit but you have finally figured out that if you want to win you can't stand back and nicely let the player from the other team have the ball..lol! You ended up on a great team with great coaches and you have learned so much and really grown as a player. I am so happy that soccer brings you joy! I don't know how far you will go with soccer or how long you will play but it has been a great activity for where you are in life right now. This year you also went skiing and really enjoyed it, went to Dollywood and confirmed that you don't like roller coasters, started babysitting some, played volleyball on a team for the first time, did summer swim team in Greenville for the first time (and learned to dive, flip turn, and you swam every event over the course of the season), and got braces. The January that Ruthie got tubes in her ears, after a whole year of ear infections and other illnesses, I told the pediatrican that it was going to be the "year of Ruthie". Well this past year was the "year of Emerson". You have absolutely thrived this year! I can't wait to see what next year has in store for you. You are such a fun kid. You are kind and happy and caring and funny and I am so thankful that I get to be your mom and walk through life with you. I love you Emerson Jane! Love, Mom

Dear JP

 

Dear JP, 

Happy Birthday sweet boy! You are a big SIX year old today. I have so many emotions. My baby is not really a baby anymore. But I am loving watching you grow and change and figure out who you are. You are sweet and silly and so fun to be around. You love to help around the house and play games and snuggle and read books. You love to play outside with your friends and you love the pool. You love to build Legos and anything Star Wars (which makes your daddy so happy!). You eat all the time and you're not even a teenager yet! There were so many years when I wasn't sure you would ever outgrow being a grump but you have grown up so much this year! 

This year you started kindergarten and are going to school with Ruthie and Ellie. You don't tell me much about school but you seem to like your teacher and the friends in your class. You won't come home and tell me what you learned in school but you'll randomly tell me some interesting thing you learned in school. For instance the other day you told me something was an "ABAB pattern"...and you were right! You are starting to learn to read and you are so proud when we read a book and you find a word you know. I can't wait until you are able to read lots of books...I think you are going to love reading!

This summer you swam on swim team and this was your first year on big team. You were one of the youngest kids out there and you did amazing. You started the year barely making it to the other end of the pool and finished the year easily swimming your lap of freestyle and backstroke at the meet. I am so proud of your determination and perserverance. I know it would have been so easy to give up at some of those early meets but you made it to the end without stopping. You were worn out but so proud of yourself and we were so proud of you! I can't wait to see what next swim season looks like for you!

This year you have started doing golf at the Y. You are so excited and as a bonus you have daddy to go with you each week which just makes you so happy! 

This year we went to Disney World which you loved. The last time we went you were 2 so you don't really remember it but you had so much fun this year and you were such a great age to go! This year we went snow tubing which you loved and you also went skiing for the first time. I was so impressed with all you learned at ski school. We will go skiing again this year and I look forward to seeing you progress this year. I'm so glad you love to ski! This year we went to Mississippi to visit Uncle Ben, Aunt Ruth, and sweet cousin K and you were a trooper for the car ride. We had so much fun there and one of your favorite things was the train museum. So many trains AND Legos. This year you got to go to Washington DC to visit the Novak family. I don't know how impressed you were with the monuments and museums (you were kind of over all the walking) but you thought the Zoo was great! We went to Biltmore and you were pretty amazed by everything. We have had so many fun adventures this year. I love seeing things through your eyes as it is such a sweet perspective. I can't wait to have more fun adventures this year with you! 

You are a wonderful brother and with all those sisters it is not always an easy job to have! You have such a lovely but different relationship with each of your sisters. Ruthie is 100% your partner in crime. She is your constant sidekick and I love how close y'all are. Ellie is your buddy. She is who you hang out with when you need a little calm in the middle of the chaos. Although y'all often manage to create some chaos of your own!  Emmie is your other mother. She is who you go to when you need help or someone to read a book or a band aid and a kiss to make a hurt feel better. I have loved watching each of these relationships grow and develop. I hope you and your sisters will always be as close as you are now. 

You are also a daddy's boy through and through. You love to hang out with any guy but especially daddy. You are such a good helper .I will often find you down the street following one of the dad's in the neighborhood around as they work in the yard...and you don't mind jumping in and helping shovel mulch or any other job that needs to be done!

I love you sweet boy. I love your belly laughs and your snuggles and hugs. 

I hope you had a fabulous birthday!

Love, 

Mom

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4 years later….

You know the game where you have 2 pictures and you have to find a certain number of differences between them? There’s a lot of differences between these 2 pictures right? The first one is 7 year old Emmie headed off to 2nd grade. The second one is 11 year old Emerson (as she now wants to be called) headed off to 6th grade. You can see lots of differences. The game would be super easy.  But there is a huge difference that I bet you missed. 

**You didn't find the difference that makes all the difference. **

You see that little 7yr old was going off to second grade recently diagnosed with Absence Seizures  and on medicine that wasn’t fully controlling her seizures and had many side effects, the biggest one being that she was exhausted all the time. 

That 11yr old went off to middle school with NO SEIZURES and OFF ALL MEDS. 

The journey wasn’t easy. When I stopped to count up the years since she was diagnosed I counted multiple times because surely we dealt with this for longer than 4 years. In those 4 years she was on 4 different medications, including the 9 horrific months she was on medication #3. The 9 months where I cried more days than not. Where we felt like we were losing our sweet girl a little more each day. 

Our journey has been hard. We have encountered people that were hard. But we also found some of our dearest and truest friends. The ones who shared in our pain, who listened, who looked out for Emmie, who looked beyond the medication side effects and all the seizures and loved her, and us, beautifully. I will forever hold dear to my heart Emmie’s friends who stuck with her through the hard and the dance friends who would quietly move her to where she needed to be and the friends who would help her refocus after a seizure without ever losing patience. And I don’t say much about her siblings when I talk about Emmie’s seizures but they have been champions through these years. I know it has often been hard and even confusing and scary for them but they have handled it all so well. They have been her constants in a world that was so often topsey turvey. 

Our journey has been difficult and I wouldn’t wish it on anyone. No one should have to watch their child seize over and over and over. No one should have to see their child’s personality change overnight. No one should have to see their child unable to function every single afternoon because they are so exhausted. No one should have to walk behind their child when they get ready in the morning and remind them, after each seizure, what they were in the middle of doing when the seizure started. No one should have to be told that their child might have intractable (untreatable) seizure. No one should have to choose to keep their child on a medicine that causes major personality shifts but it’s the first medicine that has ever controlled their seizures. 

But we did these things. And we survived. And we not only survived we grew. And from the brokenness of 2 years ago (when we switched to medication #4) we have pieced together something that is absolutely lovely. We have healed. We’re not the same as before and sometimes you can see the cracks but I think those cracks make us stronger and kinder and better. They have changed our perspective on so many things.  They remind us, as I often told Emmie, that everyone has struggles and many of those struggles we can’t see.

The most freeing thing that I got out of this journey was acceptance. For years I prayed for the seizures to end. I imagined what the day would look like and the way I would feel when she was declared seizure free. But here’s the funny thing, we went for her final EEG and I was calm. Like so calm I fell asleep during the EEG (they have a part during the EEG where they want the patient to sleep so they dim the lights and it’s quiet). If you know me you know I am pretty high anxiety especially when waiting for something (like finding out if my child is seizure free!). But I slept. I had peace. Somewhere in the healing I had seen a glimpse of the beauty God was creating from the brokenness. I had seen that His plan was so much better than mine. Of course I hoped her seizures were gone but after so many medication failures I wasn’t counting on it. But I was ok with that. We had found a medicine that controlled her seizures and had very minimal side effects. It was ok if she still had seizures. It would just be part of the story of Emerson. I think even when the EEG came back clear I still didn’t really believe that we were done. Hence why she has been off her medications for 5 months and I am just writing this post! 

For those that know her story well you know she was pretty been beaten down emotionally when she was on med #3 but she had some pretty amazing adults (and kids!) in her life who helped rebuild her confidence and self esteem.  

So did you see the other difference between those pictures? That kiddo going off to middle school is a fighter. She is strong. 

Dear Ellie

 Dear Ellie, 

Happy 10th Birthday sweet girl! It's hard to believe that you are in double digits! You are our teeny tiny girl but there is a lot of personality packed into that little package. You are so smart, you love books (Percy Jackson is your current favorite), you love legos, you are so pretty and if there is any small special occasion you always take extra time getting ready to make sure you look your best, you are witty, and you mean the wrold to us. 

This past year has been a tough one for you. 

We did virtual school this past year which was definitely NOT your favorite. We had a rough school year and you were just kind of withdrawn all year. It broke my heart to see my mostly happy child turn into a sad kiddo. I am so glad we made it through the school year and you are very ready to go back to brick and mortar school this year! 

You were starting over with making new friends. You left behind in Columbia your very best friend and that was really hard for you. You have made some great friends in Greenville and seem to be adjusting better and thanks to facetime you still get lots of time to talk to Lucy!

You broke your arm twice this year. I was so impressed both times with how resilient you were but you still got frustrated at times, understandably, and it definitely didn't seem fair that it kept happening to you! I was SO proud of you though when you got your waterproof cast this summer and jumped right in to swim team practice the next day. You went to the beach with your cast and while you definitely had some painful times and it wasn't fun wearing a cast cover out on the beach you made the best of it.

I hope that next year is a much better, less broken year for you. I can't wait to hear about all the new friends you make at school. I can't wait to see the excitement in your face when you come home from schoool and tell me about your teacher and your classroom and what you learned. I know you will have an amazing 5th grade year. You already know quite a number of  kids in your grade and you are beyond excited to get back to school!

This year you tried skiing and absolutely loved it. I can't wait to go back next year and see what progress you make. This year you did your first year of Greenville swim team (SAIL) and absolutely loved it. You made some wonderful friends, learned how to dive, swam like a rockstar with a cast on your arm, got your breaststroke legal, and can not wait until swim team starts back next summer!  

Ellie I just love the way you embrace life. You get so much joy out of whatever you do. Whether it's building with your legos, becoming all consumed with a book series, playing with your friends or siblings, or trying something new your joy is infectious. One of your favorite things is an adventure. Whether its a trip to the children's museum, a waterpark, picking apples, or even going to the library. You love FUN!

Sweet Ellie Belly, I can't wait to see what fun adventures and exciting moments are in store for this next year! I am so glad I get to be your mom and be with you every step of your journey. You light up my life just by being you! (And if we could have a few less broken bones that would be swell.)

Love, 

Mom 

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2020

Shellfish

 

This girl. She is strong and brave and fierce and smart and independent. She can handle any situation. From the time she was tiny she could do just about anything for herself. 

Here is the most recent story of Ruthie. 

Two weeks ago on a Wednesday night we had shrimp pasta for dinner. We have this dish fairly often. Ruthie used to like shrimp but for a few years has said she doesn’t like it anymore and picks it out of her pasta. So Wednesday night she picked it out. Thursday was leftover night. Ruthie chose shrimp pasta and picked her shrimp our like normal. She hung around the table for awhile after she finished eating then went upstairs. She came back down a few minutes later because her eye was itchy. Her right eye always gets itchy and swells when she has a reaction to something environmental (like dust or cats). That evening Paul had changed the batteries in the smoke detectors upstairs so we both immediately said oh it’s just from the dust that was probably stirred up. No big deal.

Oh but then little Miss Independent says oh no it’s from the shrimp. Ummm...no it’s not. Why would you even think that? Then she informed us that she stopped eating shrimp (a few years ago mind you) because it made her itchy!!! Little friend. Would have been nice if you’d informed someone of that fact! Instead our little bit who can handle pretty much anything just stopped eating shrimp. (We won’t mention the fact that she was still eating the food that was cooked with the shrimp.) 

I was not convinced at all that it was the shrimp. So we saved a piece of shrimp and the next day I rubbed it on her arm. She got a tiny ant bite sized hive on her wrist. So I figured we should get it checked out just to be safe. I talked to Dr. Williams (our fabulous OIT allergist) on Monday morning and he sent me an order to get blood work done for shellfish allergy. We had the blood work done Monday afternoon and Wednesday morning the pediatrician called me to let me know the blood work was back and she is allergic to ALL shellfish but especially lobster and shrimp. 

To say we were disappointed is an understatement. We had gone through so much to ensure that we didn’t have to worry about food and now we have a new allergy. The good thing is that shellfish is much easier to manage than peanut. If I had to have one of those allergies I would absolutely pick shellfish. Nobody puts shellfish in granola bars or grinds it up to make crackers! We are coping. It was a bit of a shock. But it’s ok. We’ve dealt with a harder allergy. It also helps a LOT that she is older. She knows what shellfish are, she can tell people she is allergic to them, she is old enough to ask before eating something. 

And she’s Ruthie so you know she’s on the ball and can handle it. I also have full confidence, based on past experience, that she will speak up and tell people that she is allergic to shellfish. 

So where do we go from here? We will do blood work again in a year and do a skin test. Lots of people have asked me if we would do OIT and the answer is no. Having to eat multiple shrimp every day is a lot different than eating peanut every day! Plus when you traveled you would have to make sure you had access to shrimp. OIT is supposed to make life easier not more complicated. We may look into SLIT (similar to OIT but it is drops under the tongue and doesn’t provide the same level of protection as OIT) at some point in the future or, who knows, there may be another option available down the road. The wonderful thing is that there is so much more awareness of food allergies right now and much research being done so there is hope for the future! 

So that’s where we are. And I still can’t get over the fact that she stopped eating shrimp because she was itchy and she never told anyone. We had a discussion about that. 🤣