We had a rheumatologist appointment last Friday and we got some very unexpected news…..
*deep breath* We’ve been discharged.
Dr. S will always be around if we need him but he said in his opinion he thinks Amelia will be fine. It’s been 29 months since our one and only flare and we’ve been medication free for almost 12 months. After he told me that he didn’t need to see us anymore I was stunned, he asked if I was sad and I actually kind of was. He’s like a super hero to me, he healed my baby and took her pain away.
I’ve made a decision that this is a good place to leave June's blog, it’s time to close this chapter so we can begin a new one. I won’t shut it down completely and I want any parent to know that if you want to contact me at any time with questions or just wanting to vent, I’m here for you. Email me at firstname.lastname@example.org. Please don’t ever hesitate, I’ve reached out to many people in the beginning of our journey and it was a huge comfort to know there are people out there that who knew what we were going through.
We've had a lot of help along the way and I want to say thank you.
Thank you to my friends; Cheryl, Lori, Janelle, Shauna, and Bobbie. Your support means the world to us and I don’t know what I would have done without it. You celebrated every milestone with us, cried when I cried, and were (and still are) JuneBugs biggest fans. I love you ladies. Cheryl, I will never forget all that you’ve done for us, you’re an amazing friend and I’m so honored to call you Mia’s “fairy Godmother”. You’ve been a such a blessing to my family, thank you.
Thank you to my Mom and Dad, you put your entire life on hold when JuneBug was sick. I can’t imagine how boring it would be sitting in the hospital without Dad to keep me company, watching marathons of crappy reality shows and eating all our meals from the hospital cafeteria. You were so involved with her care, it means the world to me that you were there with us. I felt such relief to know that Mom was at home making sure the boys were taken care of. My heart hurt so badly that I had to leave them, but I knew Gummy was doing everything she could to distract them from the fact that Mama wasn’t there. I love you both so much and I'm so lucky to have you as parents.
To the staff at Aspirus in Wausau, St. Joes in Marshfield, and American Family Children’s in Madison: Keep changing lives one patient at a time, every day you make a difference. Thank you so very much for everything you do.
Thank you to my amazing sister, I would be lost without you. You were the very first to see Bug come into this world, you were there when we thought we were losing her, and you’ve been there ever since. You spent Christmas in the hospital with Amelia so I could be with the boys, you were Erik’s Mama while I spent weeks in the hospital and for months after while Amelia was recovering. You’ve sacrificed so much to be there for us and allowed me to have the time I needed to concentrate on getting JuneBug well. She is thriving today because you love her enough to make those sacrifices, thank you from the bottom of my heart.
Thank you Amelia, my JuneBug, the light of my life. You taught me more about life in your first year than I had learned in my 28 years combined. I never thought an adult could survive what you did let alone a tiny infant, the fact that someone would have no idea what you've been through if they looked at you today is amazing, you are my sassy little miracle. From the tips of your pink sparkly painted toenails to the crown of your beautiful blonde mop of curls, you are perfect. I love you to the moon and back my Bug.
And finally, thank you to all my readers and followers, your support has been beyond amazing. I never thought my little blog to update my family would have reached so many people. Thank you for supporting us and providing encouragement when I was feeling hopeless. I will post again if the disease decides it’s not done with my girl, but I hope for our sake you never have to read another word I write. Thank you for taking this journey with us.
If in a few months or years you’re just finding this blog know that Amelia is still symptom free and that there is hope for your child, niece, nephew, grandchild, or whoever you know with SoJIA. JuneBug is living proof, there is always hope.
|Thank you from Bug and her Mama|