March 31, 2014

Life's Little Challenges

There are good days and bad days with Stargardts. Sometimes I can see the tiniest bug on the wall and Andy says to me, "How in the world did you see that?" Some days, I have to read or watch TV with the lights very dim, as to avoid too much glare and there are days where going outside in the sun is actually painful for me because of my sensitivity to light. There are days where my eyes feel strained, bruised and scratchy from straining or trying to focus more. Some days, I can see clearer than others. Yes, there are good days and bad...but in between the physical discrepancies, there is an emotional burden so to speak, that I battle everyday. 
For example, when Andy travels, and Ryan has to be to Tae Kwon Do, it is quite humbling to have to ask either my mom or dad, or even a friend of Ryan’s parent. It is actually a bit humiliating and I prefer not to have to do it. Sometimes I will just keep him home instead, which then makes me feel guilty that I am putting him out. The kids definitely suffer from my situation often times, and I truly battle with those feelings of guilt and inadequacies as a mother. Everyone says, “You can’t help it”, but I do feel like a failure as I promised when I had children that I would do everything in my power to take responsibility and care for them. I guess this is out of my control…not in my power.
One day recently, Ryan wanted to go to a friend’s house to play, but Andy was in the US Virgin Islands, so I had to ask his friend’s mom to pick him up and bring him home. I often catch myself fibbing about the situation here just to avoid questions and resentment and great embarrassment. Friends and family are often kind and more times than not make themselves available to me/us in time of need, but it just feels like I have failed…failed my family, my friends…and myself.
Now, Ryan is in hockey, as of late, and it is beginning to feel a bit overwhelming (especially for Andy) to get him places. That running-around out-of-control feeling you get with children on-the-go, is amplified in our situation. It does take great planning and commitment from our supporters, but we do make it day by day and our kids I do say…are usually happy. J
I just wish Andy didn’t have to deal with such a burden…I wish he could just be a husband and father, not a chauffer and shopper so to speak.
Doctors appointments, grocery shopping, errands to the bank and post office, all of them quite tedious when one person is doing them. I am very grateful to have him and all of our relatives and friends in our lives, but at some point, I would love to just get in the car and drive….maybe home then would not be so daunting and monotonous. It would be more of a place of sanctuary and not seem like a prison.
Luckily…I have Tyler to keep me occupied and he certainly does! Never a dull moment with him around, but that soon is coming to an end as he starts preschool in the fall. Bittersweet indeed.


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