Wednesday, July 7, 2010

My feelings thus far

This past few weeks has been an overwhelming whirlwind of doctor appointments, school testing, special education arrangements etc. I have had little opportunity to reflect on where I am emotionally. As a mother, I am broken hearted over the challenges that my son will now face in his life, and bitterly disappointed over all his lost dreams. He wanted to play major league baseball one day, and to drive a classic muscle car. Those two dreams are forever shattered, unless there is a miracle. As we rode back from his low vision clinic consultation, he quietly remarked that "Anu won't want to marry a blind dude". For an 11 year old to know who he wants to marry and to also be capable of contemplating the potential impact of his disease on that desire is astounding. Thank God I was wearing sunglasses, because I didn't want him to see the tears in my eyes. I told him that when the time comes to find a wife, God will send him a woman who will appreciate him for his abilities and be able to look past his disability. What a tough topic to discuss with a boy who is on the cusp of puberty, and facing a lifetime of darkness...Later, in a separate conversation he broke down and cried a bit saying "if God has such a great plan for my life, why am I going blind?"
 I pointed him to Isaiah 42:16 which clearly demonstrates God's special care for the blind. It was a great comfort to me and I think it made him feel better too...But still his question has merit. I mean there are healthy adults who struggle to find God or a plan for their lives...How much harder will it be for my son? Later, I threw a temper tantrum with God and expressed all the frustration and doubt that I feel festering just below the surface. I try to hold it together, especially around my son because he can't afford any more doubt. I also don't want to be a hypocrite. How can I tell him to trust in a loving, fair God when I myself am suffering from lack of trust. I cry in private. I fully understand and empathize with the bad attitude that occasionally rears its ugly head within my son. Besides hormones going berserk, he is going through stages of the grieving process. Denial, anger, blame etc are all normal parts of healing. I confess I am in the anger phase myself. I find this whole thing horribly unfair. This child was rejected by his birth father, witnessed awful things prior to his life here in Hawaii, and once adopted by my husband struggled  with low self-esteem and anger management issues. He was diagnosed at age 6 with mild to moderate reactive attachment disorder. He has been in therapy ever since, and has made impressive progress. Now this setback. It has been almost too much to bear. I also have a younger son who is special needs, so my life is exhausting and immensely stressful. Some days I don't even want to get out of bed. I alternate between taking joy in my sons' small victories and crying my heart out over their torment. Being a mom is so hard. I wouldn't miss a day of it for the world though. My sons teach me every day, the true nature of perseverance. No matter how hard their lives are, they always manage to wake up each morning with a smile and a zest for life.

1 comment:

  1. Greetings. Your site has given us an incredible strength to my family and me. Less than a year my nephew was diagnosed with retinal dystrophy and do not know anything about the subject. We have since sought information and found your site. We are practicing Christians of all life. My nephew is already feeling the loss of vision and often express what it feels concerned and asks very helpful to know what the signs said. Feel unsafe crossing streets. Anyway if I imagine you know what I'm talking about when I say the insecurities that this condition occurs. He has only 12 years and likewise his dreams crumble. But according to his website encouragement helped us want to share with you that despite the things that happen God is still God and still has all the power. Although human minds do not understand many things, just ask him to help us with strength when doubt looks and help us keep the faith every day, because according to our faith, the miracle will be made at the time of God. Me and my family so we believe and we invite you to also believe. From today you will be in our prayers daily along with our nephew and ask him that in spite of the doubt, force yourself to keep faith in God and see and gave of his miracle at the time. Likewise, I believe that God is just and already we have separated the ideal partner to love them for their qualities, not their limitations. I am convinced that they have a match and they both love, I believe your son and my nephew. Believe by faith that the vision loss will be stopped. Amen. My email is pebalon74@yahoo.com

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