How is it possible that you are already 16 months old? I vividly remember your first night home. I didn't even attempt to place you in the tiny bed where you were intended to sleep I instinctively placed you right beside me where I knew you'd be safe. You did so good, honestly, you slept way better then than you do now. Then, you didn't know about doctors, treatments, or night terrors. On your third day of life, your main focus was snuggles... I wish I could provide you with that peace and security again. At 16 months old fear should not over take your sleep, instead warm blankies and monster jammies should. My heart cries when you start thrashing around covered in sweat at 3am - heart pounding - terrified. Instantly, I swoop you up and pat pat pat until the fear is gone... but it never seems soon enough. I wish you could sleep better bud! Because sleep helps you grow and learn. But don't worry, I'll continue to scare away those night time monsters until you're brave enough to do so on your own.
You are one strong cookie. You love to carry things around, knock things over, and destroy everything in your path. Emptying baskets and refilling them could be your favorite pastime, along with pulling clothes out of the drier. You can be such a big help on laundry day. You love to lay in the warm freshly scented clothes (sometimes we dump them out and we roll around in them until they are cold and have to be refluffed. You think it's hilarious when we put them on our heads) I can't imagine cleaning without your little hands helping me. You are truly the best picker upper I know and don't get me started on laundry unfolder.
Music is your jam and dancing is your joy. Any and everytime a melody fills the room you are bobbing that head and clapping those hands. Seconds after your dance party begins you look around and make sure your momma is dancing with you and just like that you are my joy. Together in the middle of the room we are dancing more in sync than the pro's. Yesterday we laughed so hard during a wallykazam dancing party that you fell down and continuned to laugh. Sometimes we move the party to the bed and jump around. You place your hands and trust in my hands and we bounce around until we both crash. When you change the world and go on dancing with the Stars I'll be your number one fan in the stands during every performance. No matter what you do in life I'll always be your biggest supporter. I'm already so proud of all you have accomplished in life and can't wait to witness your journey through life. Please don't forget that I'm always on your side and anxious to help you accomplish your goals.
Let's have a little convo about walking. You can do it very well, but don't feel pressured to do so 24/7 if you'd rather crawl be my guest. You have to walk your whole life so if you wanna crawl until you start kindergarten fine by me. But don't expect to get down anywhere other than home. Crawling around petsmart would be gross... the tula has a weight limit of 45 lbs and I will gladly carry you until college.
Haircuts - shew those are scary huh? But your hair requires loads of maintenance and hundreds of haircuts will be in your future. But no worries we can always stop and get lemonade before hand and I'll always sit in the chair with you if that's cool.
Paw patrol and bubble guppies best shows ever right? I'm pretty sure I can quote every episode and sing every lyric without flaw. I always said I would be one of those crunchy moms who never let their kids watch TV (yours is limited to treatment and car rides) but seeing the joy you get from a talking fire fighting puppy had adjusted my views. When your happy I'm happy even if that requires watching Mr. Grooper ask "what time is it" for the two thousandth time. I cross my fingers and hope you learn a few things through the various characters but I feel you are missing out without Barney in your life. I'm sorry dear friend, hopefully I can fill that void.
Sometimes you sing. It's very impressive and you get embarrassed when i take note of your melody. When I stare and smile I'm just absorbing the moment not asking you to stop. Sing baby sing, girls love that.
You love balls and yelling ball. Any time a ball is in eyes sight you are vocalizing it. You love to chew them, carry them, hoard them, and throw them. So far have been favoring your left hand for the act of throwing and most of life functions I'm very anxious to see if that changes I don't mind either way. It would be super cool if you could use them both. I can barely use my right hand properly my left is more like a noodle.
You have been swimming twice this year. Being on antibiotics over the summer makes being in the sun tricky, but I don't want you to miss out on a summer joy! So we do treatments a little early and head to pool when the sun goes down. You love to kick the water and laugh when you splash me and I squeal. You love it when I swirl you around in the water and I love to feel your tight grip on my arms. I have a slight fear of the water and it makes me smile seeing you so comfortable in it. Fear is something that tries to play an active role in your life and to see you overcoming it is breathtaking. Alaays remember that your God says not to fear but rely on him in everything. Too often we believe that things are so small amd petty that he doesn't want to be involved in that little fear but he does. Our smallest dollop of fear can be transformed by him if we invite him in to overcome it.
I can't begin to tell you how sorry I am that I hold you down and give you medicine and treatments. I dread that time of day often because i know the look you give me to well. That look of fear, resentment, misunderstanding, and pure dread cuts me deep. I try to make it quick and enjoyable but I know I'm unsuccessful when the tears fill your eyes. I know I have failed making it a fun time when you start screaming "momma, all done" "ALL DONE" I try to hold it together and smile when your thrashing your head against my face and busting my bottom lip. I know you just want to play vs being hooked up to machine and blowing smoke for hours. I can never understand what it feels like to have cf and to dedicate so many hours to treatments but I can understand the pain associated with making you comply to the plan. I try to hold myself together when you are bursting into pieces but sometimes I fly apart with you. Together we sit in a puddle on the bed and we are both so angry that words aren't even descriptive enough to express our feelings - thankfully, tears seem to get the job done. Im sorry that I have to be consistent with your care plan and that I can't add "off days" to the schedule. Please know that I want the best life for you possible and being able to breathe is a very large part of living that's why I expect so much out of you. I want you to have control of your special gift, CF, not the other way around. I want us together to fight it everyday we will not just lay down and let it take what it may. We will huff cough together, do pep together, and blow smoke for hours on end because CF WILL NOT WIN. I'm sorry my son that this is a forever journey but I know that you are a warrior who has been suited for this battle. I know without any doubt that God has a plan for you that exceeds anything that I could have written for you. That gives me hope, it gives me peace, and it gives me joy. When I feel like all I do is actions which make you hate me I remember that God has a plan for you which has your best in mind. I remember that by me forcing you to do treatments i am keeping you healthy to live life and do Gods work. that makes me feel so reassured that I'm doing okay. I can assume that their will be days when you wanna take a break from cf and just live life but please don't. Don't throw about all the work you have done for a little bit of normalcy. At 16 months old you have endured, with a smile, what most won't endure in a lifetime don't throw that away. When you begin to think about skipping a treatment look back at 16 month old you who has already done hundreds of hours of hard work to keep going... don't disappoint him.
At 16 months old you have imprinted on my life more than anything or anyone has in my twenty-one years. You make me laugh so hard everyday by just being you. When you say kiss and hold me tight my heart melts and I feel love stronger than ever before. When you cry in my arms I feel purpose that I have dreamed of. When you kick and scream I feel so uncertain on how to respond but so far a gentle hug and conversation goes a long way. You are brave R don't ever let anyone tell you otherwise and don't allow yourself to belittle that. You are a warrior who God has made for this journey - try to remember that on the rough days. Keep your head up when you fall and when you fail you can always try again, until you fall and drop your dairy free ice cream then it's gone. Sorry. Keep laughing even if you are laughing alone. Your laughter can warm the coldest of hearts... I know it has warmed mine. Especially when i feel that it is full of hate and selfishness you laugh and remind me that God placed good in this world and I feel ashamed for being so ugly on the inside. Remain pure as you are now. You don't know sin or the uglies of life. Stay true to who you are because who you are is enough. It is beautiful. It is without flaw. It is admirable. And mostly it is made in God's image. Love who you are because God made you perfect. Be strong. Be brave. Be true. Be the person I admire with every cell of my being. Always know it's okay to have feelings and to voice them, just because you are a boy doesn't mean to silence what your heart is saying... Never forget that you are loved most of all. No one is loved and adored like you are. I promise. I cherish every move you make. I thank the Lord for you so often it's always on my lips. My love for you is unlike anything I've ever heard of or encountered. Even when you are throwing a fit and beating me up I maintain a slight grin because I am so in love with you. You are my joy. My happiness. My love. My life. You are everything good in my life. I am beyond proud of you and I always will be. If your dream is to raise ant farms I will support you all the way and buy ant farms for dummies on amazon right away. I will always support you and your hearts desires. I will always be on this journey with you even when you try to kick me off the boat I'll paddle behind until you ask me back on again. I promise to never forsake you just as God has. I promise to always give you my best. Even if that isn't much some days. My life I devote to your health, happiness, and overall well-being. You are so perfect my 16 mo old miracle. As you lay asleep on my arm tears are dropping onto your freshly cut hair because I am so amazed by you and so thankful to be your mom. My love for you overwhelms me and I am so blessed to have you in my life. I pray that you will always know how much you are loved, wanted, cherished, adored and prayed for. I know I can't accompy you on every voyage you partake in but my prayers and my heart can. You will never be alone love, momma will always be with you.
Goodnight my dear child, I love you dearly. Thank you for making my life so wonderful.