Lisa...truly a beautiful poem.
Abella's mom, everything is still so new to you and I remember it well. There is something difficult about the first year or so even when they don't have CF. They can tell us so little about their needs and we wonder if we are doing everything. Add CF and the world of worry widens tremendously. I think we have all been there (and still go there sometimes).
Grief is also part of the picture here. Often in our attempts to just keep going, we forget there was something we lost when our child was diagnosed. CF doesn't not diminish our love but we often carry many strong and powerful emotions with that love (ones I know I was surprised by and judgemental of). I had to have a bit of help working through my grief. I gave a voice to my fears and worked with a natural release technique for a couple months. I literally could tell when I was done grieving and ready to move foward. The nightmares and worrying stopped. I found a deep trust in myself and I felt empowered to explore the many options available in caring for him.
Do I still get drawn into anxiety? Sure from time to time...but I am very watchful of my emotional health and I have learned how to nurture myself through things which bring me joy and a connection to goodness, beauty and truth in life. At first I really had to surround myself with things which did not produce negative emotions and fear. For me, I'd rather not read/listen to the news and I limited my reading on CF. It was important for me to remember he did not come here to suffer, he came he to be with us for as long as he needs. It is true of any child we have...we do not know how long we will walk this journey together. I have faced the fact that life is precious and very much a mystery. My goal is now to embrace life with all of it's many faces so I can fully live in the moments when CF is asking nothing of me (which is hardly ever really).
For my husband and I, it has been a process of acceptance and learning to live more fully. CF has brought a different perspective on life and it has filtered into so many areas. In a weird way it has deeply blessed our family, brought us closer, woke us up. I look at my now sturdy 3year old and see nothing but health and vibrancy. Our children light up our lives and transform us forever and always...
You are not alone...you are very much cared for...you are a great mom...take care of you heart and don't be afraid to ask for help from friends, counselors, family when you need to talk or have a break.
Sincerely,
