I went to a much needed lunch with a friend who's journey includes loving and advocating for her special needs children. Although feeling VERY refreshed from the beach last week and some personal adjusting I am doing, I found myself sensing another breath blowing over me, as we "shared life". We share faith, family, and the journey with rare disease. There are many other commons. The way we get drained and exhausted in the fight to help, support and get the adequate care. I found myself thinking about the many out there like myself and her that might not understand, or forget the need to refill their own tank.
When we are dealing with the complexity of navigating care, an advocate, struggling with financial challenges that come with rare disease often, or a mom, balancing the demands of life. All is very relevant in the daily life. Sometimes we need to adjust focus to give attention to the needs or lack of attention to our own bodies. Physically, Emotionally, and spiritually. Often we need to also enlist others to come alongside and confirm things with us.
I knew for awhile that I was neglecting me in CERTAIN areas. We went on a fast pace from May of last year to now to fix the needs that Tommy had to get and quickly. We did what would have happened in 2 years in about 8 months. CRAZY..... 39 appointments....There was a lot of grief I buried in the fast effort to fix the injustice of a broken system. I just kept saying" God will provide" But I buried alot of disappointment, anger, and feeling of loneliness. I actually had someone who did not get it make an insensitive comment that "Your situation was just not as bad as others" When I finally confessed this to a trained counselor. They poured out compassion, understanding, care to broken hearted mom who needs some love and understanding and medical help to get back. I am coming back and will be stronger from the weak moments that have come my way.
Moms~ who are in the fight to care and advocate for the rights and needs of our very special kids. DON'T FORGET YOU. It's OK to ask for help. It's alright to say- I need someone to come alongside me, lift up my arms and get me to the other side. You do not have to be supermom. There is a you inside that needs nurtured and cared for. Find people: counselors, Dr's, people who have experience with this unique journey. Sometimes it requires pulling away to re-charge. Other times it's adjusting. Personally I am adjusting. I am taking steps to re-fill, adjust, and fix the things that got neglected and tapped out. I am choosing people to hold my hand, walk with me, understand, love, and respect this very unique journey.
I am being reminded that there is REAL VALUE to the shared life, the open life and doing life together. Our society is so busy and we forget to invest or make time for the things we need. ONE ANOTHER. There are many who have stood with me. Praying, believing, and hoping for what we needed. So weather your on the special needs journey, or anywhere else in life. Find someone to share life and come alongside and breath on you. The person probably has been there and done it before you and can share the experience and help you too!
Your life will be richer as you do.
Love +Lissa
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