Friday, April 22, 2016

Support System

My Dearest R,

Amazement, thanksgiving, and blessings feel my mind. You are truly adored by so many, but of course I love you most of all. Last weekend a spaghetti dinner was held in your honor along with all those warriors battling cystic fibrosis. Over 150 people came out participated, donated, and fellow-shipped. I felt so honored to be your mother and to have such wonderful friends and family supporting cf'ers, and supporting us. The spaghetti dinner took up money for our family and for the cystic fibrosis foundation. The results were astonishing! We raised over $400.00 for the foundation! Making out total for this years walk, at this time, over $1,700.00! Go Roanans Rebels! Sunday morning, I was also given the opportunity to tell our story and inform the community about cystic fibrosis. I am so thankful to get to spread awareness and I cannot wait to have you standing by my side telling our story and how God has a perfect journey planned for us. We had a Super Sunday and I am so thankful for it. The money donated to us was above and beyond what I expected and I am so thankful for every penny. Our family is so blessed to have such special friends, family, coworkers, and community supporting us. I know that together we will one day find a cure for you, my warrior, and for all those tackling CF.

My heart swells with love and appreciation to all those who cherish you.

 R, you are one amazing kid who has endured more in 14 months than most people do in a lifetime. Your strength, beauty, innocence, and joy overwhelm me. As you get older managing your health becomes more difficult since you are getting a personality of your own. In the past you have been my little baby who was good to do whatever whenever, but now you are a tiny human with so much fight in you. You are now aware of what your vest is and you hide in the corner when I say it is time to start treatments. You scream and thrash about as I try to administer your medications. You attempt to throw your neb's across the room and struggle to escape my grasp. You cry, scream, kick, and wiggle around while I try to hold you down for the 30+ minutes which are required to complete your inhaled meds and vest. My heart shatters as I hold you down to help your lungs function. Tears often glide down my cheeks as you try to escape my arms. I fear that you will grow to hate me, but I pray that you will know that I only make you do treatments because I WILL NOT allow CF to take you from me. I love you too much to live one second of my life without you in it. You give my life so much joy, purpose, and laughter that nothing could ever replace. You are the spark that lights my flame. I praise God that he gave me you. Every moment of every day I am so thankful that you are my son. You amaze me daily and never fail to make me proud. I love you so much more that my words, actions, and prayers could ever express. You are my tiny human and you are my life.

Our community, family, and friends have bonded together because of who you are. They have prayed for our family, for your health, for our faith, and for our daily life. They have pulled from their pockets to provide you with the best care possible. If it wasn't for our friends and family you would be required to be in daycare and I work full time. Your chances of infection, virus, and other issues would rise drastically and your health would quickly decline. Every time we go to clinic they brag about your health, and they always make it a point to say it is partially because you do not attend day care. I am so thankful that I have the opportunity to stay at home with you and manage your health myself. I owe this thanks to the good Lord who has never failed us, and to our friends and family. We are so blessed R - and I am so thankful. I pray that you will have the opportunity to one day personally thank all those who have been on this journey with you.

I love you so much and I am inlove with our life. You are my hero, my warrior, and my best friend. I cherish every second you and I are together and I cannot wait for our future... Our journey is only beginning.


** A huge thank you to our friends, family, community, and Brittontown Church for making our spaghetti dinner a huge success! We sold over 200 shirts this year and I also have a few extras as well (If anyone is interested please contact me A huge thank you to each and every individual who came out to support the CF foundation and R. I am so blessed to have you all in my life and supporting my son. I have cried joyful tears about the spaghetti dinner success. With your help we will cure CF and I will financially be able to give R all the things he needs. From the bottom of my heart Thank you.**

This verse keeps coming to my mind and I believe it describes how I hope each supporter of my child feels. I pray you feel appreciated, loved, and blessed. I pray that God blesses each of you and your families. I pray for your health and overall well-being. I praise the Lord for placing you in my life...

"The Lord bless you and keep you; the Lord make his face shine upon you; the Lord turn his face towards you and give you peace." -Numbers 6:24-26

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