I am a person who is completely happy with the simple things in life – a card in the mail, catching up with a friend, a cupcake! It truly does not take much to make me smile.
Many times I have mentioned the amazing tribe of people who love me, but I have not really focused on my husband all that much because he does not like the spotlight. It has been extremely hard for anyone to understand what I go through especially him. I am sure he wonders why our life and plans have been disrupted like this. He has to be exhausted by the appointments, the medicines, the surgeries, and the constant management of this trainwreck.
He often says it is difficult to watch someone you love experience illness and pain and know there is nothing you can do. He has the front seat and sees me at my worst. He remarked to my doctor just the other week that “her 5 is a 9 for most people because she is tough, really tough.” It is a simple statement like that which makes me feel so supported by him. He will, however, agree that I laugh way more than I cry.We have some fun with the hand we’ve been dealt.There are times we seriously laugh with each other! When you have a brain that fires slowly from the disaster living there you can just imagine some of the hilarity that can come from it. Although it is when I am at my most vulnerable, or in great need, that I see myself in his eyes. I see him lost and confused about what he can do to ease my suffering. On two occasions this month my doctor said, “there is no other choice but to bring her to the ER to ease her suffering.” He suffers in a much different way when I cannot stop the train.
I’m bringing him out into the spotlight now because it was the other day when I woke to a wonderful surprise from him. It may seem like a simple act to most, but to me it was everything. Over the past couple of years I have really let my gardening go. My love of flowers shows when I am admiring the yards and planters of others. The people in my tribe have spread joy by giving me some great plants and flowers for my porch. I’ve always been grateful to have something blooming! On Sunday morning I woke up to coffee and flowers… flowers around my bird bath, flowers around my light post, and was shown even more flowers near my back retaining wall. They weren’t just random flowers either – there were all types that go well together. I would have chosen these flowers and plants myself. I was speechless and a little confused because I spent time outside in the Eno on Saturday and planting was not being done. All the planting occurred in the middle of the night when I was completely clueless. My husband donned his camping headlamp and dug, planted and mulched. (Note to neighbors: Nobody was being buried in the dark of night). He deliberately chose my favorite colors, and made certain that I would have plenty of blooming love over the next two seasons.
This speaks volumes to me. It is something he CAN do. My husband has made my heart bloom during a time when I often feel like there is an eternal winter.
There are things that seem too much to handle sometimes. I am told I am a trooper – I am strong – I am admirable. The truth is I am weak and I. Am. So. Tired.
I’m tired of being held hostage by my illness. I am tired of the unrelenting pain. I am tired of trying to constantly explain so much in order to be minimally understood. Most of all I am tired of what all of this does to my family.
The most empty feeling I am left with is when I am sharp-tongued and harsh with the people I love because I am suffering. What is this doing to THEM?
I suddenly became paralyzed with grief at the thought of altering who my child becomes. So much of her young life has been filled with worry about me, and seeing me so broken. I have been absent for many things, and when I am involved it is a struggle. Her eyes often meet mine and mouth, “Are you okay?” What has my being so ill done to her little heart and mind? Has all of this crap damaged her? The worst part of it for me is that I can never get the time back. I can only focus on what is ahead and what I can do from here.
What can I do from here? I just do not see an end in sight. After taking some great steps forward – I am back to a place I didn’t want to be. Lost. No answers.
The past several days have been a deep struggle. I am confused and frustrated at the moment – all because of the pain and the unknown. I search for ways to keep my mind off my body, and today my mind just keeps going back to my little girl (who is suddenly not so little anymore). I pray and hope and beg that answers come, and pain is gone or fleeting. Though I may get upset and down, I keep telling myself something good has to come from all of this! I am waiting on the good. Oh God, I need some good!
Filed under Brain, Life, Sarah
When something bad happens to Mom everything changes. Roles are all out of whack and the kids often have a difficult time coping.
I saw all the anxiety in both of my children when I became very sick, and throughout my multiple surgeries. It was a scary experience for everyone and the timing could not have been worse. Our entire holiday season was turned upside down, graduation was disrupted, and routine activities became a tremendous challenge.
Having a take charge mom in my corner was my saving grace! She was able to maintain a balance for my kids and offer that much needed normalcy when our lives were anything but normal.
I work hard not to dwell on my health, however, SO many conversations pop up about my issues no matter where we are. My policy is always honesty with my kids no matter what the subject. My kids are people who want to know what I am facing and need my comfort through the hard-to-handle details.
As moms we want to protect our children as much as possile. I can’t protect my kids from all of this, but I work to help them handle the difficulties and range of emotions. I believe in their inner strength and resilience, and understand their need for the truth.
Illness is a process. When children are involved there are so many additional adjustments. Often times I have great guilt and worry about how my illness will manifest later in their lives. I’ve read how a major illness can dramatically change a child’s development. My oldest child is essentially an adult and had the best of me, yet my youngest is witness to so much more and I feel like she is being shortchanged. I am simply not the person I once was.
I do not want my family to resent me or mourn the loss of a once vibrant and active mom. Not a day passes that I do not say a prayer for THEIR strength through all of this. My hope is they remain as normal as possible, and grow into stronger people having faced a trying situation early in their lives.