Dear Me..

Dear Me Three Years Ago, Yes, you're devastated. You were told that your baby is not okay- he is sick. You have a demanding med schedule that is crucial to get him healthy. How am I ever going to manage all this you are wondering. Well guess what, you will. Every day won't be perfect. You will wake up at 5:00am every so often and realize that you didn't do his 2:00am meds. It's okay. The next night will be better. His phosphorus level is stubborn. It just won't get into the 4's- but it will. You are grieving over Landon's diagnosis and the fact that you won't have another baby, Landon won't have a brother or sister. Guess what- he will. Cystinosis won't scare you for very long. You can't believe that his doctors are consulting with you about what the next step should be. You don't know what Cystinosis is and certainly can't make decisions about how to treat it in your child. But yes, yes you can. You will learn what questions to ask. You will find supports in the Cystinosis community. Cystinosis will bless you in a lot of ways. Oh yeah- and it's okay for you to grieve, to get angry, to feel sad. You will do that over and over and over again- sometimes all in one day. You will tense up when the parent of a "healthy child" complains that their child won't eat, has a cold... They just don't get it. It's okay to feel that way, but you'll get over it. You are forever changed by the way, not for the bad, don't worry. You emotions are exaggerated and that won't really go away. You will get so excited that you can hardly contain yourself and when you feel sad or nervous, you will have to use those relaxation techniques that you learned about in grad school to calm down. And you know what, Cystinosis will not occupy your mind constantly. I promise it won't. He will be okay. The doctor was right in saying that he will be a normal kid with some bumps along the way. You vow to kick Cystinosis' butt. You will and so will Landon. Dear Me Two Years Ago, The doctors got Landon's meds figured out and he is getting healthier. You're still overwhelmed. His emotional health is so important too, and your baby is so anxious, so nervous, so timid. He is walking now! Yay! I know that he's really not eating yet, but keep at it. I know that all you want is to sit at the table or in a restaurant and to have him actually eat. He will. You have to be patient. You do a great job in managing his med schedule. Just accept the compliment when his doctors tell you that. You are doing a great job in making his life as normal as possible and you haven't let Cystinosis stand in the way of anything. Putting him in school was a good idea. When he goes to school by himself in the fall, it will be hard. He will not want you to leave. People will tell you just to go and that he will be okay. You will follow their advice after several weeks and will walk out leaving him to scream for you. The teachers will come to get you because he threw up. As you sit in the hallway, holding him with your head learning against his, you will cry. You will think of the years to come when you will sit at an IEP meeting educating the teachers and staff about Landon's disease and what special needs he has. You will think about explaining to the other children and parents what is different about him. Then you will pull yourself together and will follow your instincts. You will follow Landon's lead and one day he will say bye to you and will walk in the classroom by himself. You will be thrilled and it won't make you sad at all to see him separate from you. Oh and guess what- you are having another baby. Landon is going to be a big brother. Take that Cystinosis! Dear Me One Year Ago, He's come a long way. He's eating better, eating well actually! He is still very cautious and there are a lot of things that he just refuses to do. It makes you sad to see him afraid to go down a slide and to do other things that his peers do without a problem. Your trying not to blame everything on Cystinosis but man is it hard sometimes! He doesn't cry anymore when you go to the doctor and they try to get his height and weight. He actually cooperates happily. He's not so scared of people anymore. A substitute therapist came out to get him from the waiting room and he went back with her with no hesitation. He keeps growing consistently and is just about on the growth chart now! His health is great and the doctors credit you for that. You credit the doctors, genetics and research- that's all true, but please just accept the compliment. It will keep getting better. He will amaze you... Your life is beginning to feel normal. You are starting to trust that other people can care for Landon too. You may not believe this, but you will go back to work soon. It will be very part time but it will be perfect for you. You really won't believe this but you will go away for a weekend with Jimmy leaving the boys behind. You will depend on someone else to give meds and eye drops and Maw Maw will do just fine. Can you believe that he will be playing tball next year? Oh, and he will go to the park and will go right down the slide and will jump on that thing that spins and scream for you to push it faster and faster. Yep, he will. He won't need therapy anymore this time next year. He will start going once a month just for maintenance. You will think more about how to handle him refusing to clean up his toys and whether you should let him play bad guys and with swords than you will Cystinosis. Seriously. You will stop worrying about whether or not Landon can keep up with his friends next year because you will struggle to keep up with him. Oh and that anxiety and social stuff, don't worry about it. He'll still be cautious which you will appreciate but he will start making friends easily and will have a lot more confidence. Yours truly, Me today