Holding on to hope, with a Special needs future.
As each day passes we face new challenges, My 17 year old Sis is consistently told “NO” With explanations she isn’t really able to grasp. Her new crusade is Driving… “I want to drive someday” I hear this a hundred times a day. It breaks my heart more and more. As a Mother we hold onto hope that our kids will break down barriers and somehow be given every opportunity to take on all that life has to offer. For my sweet Sis there are some things she will never know.
I hate “labeling” my daughter and shutting the door on hopes I once had but as she grows each day I realize that she now notices all of the things she will never know. It breaks me inside, you see along time ago I made peace with God and mourned the loss of who I thought she would be and fully embraced who she is but that is now irrelevant because she now sees what she wont have.
I will spend my life giving her every opportunity to insure she has the best quality of life. For her dreams to come true what ever those might be, but there are some things I cannot give her and that is where the story changes.
As my oldest daughter is off at college experiencing freedom and all that college life offers, I see her blossoming into an amazing woman who will one day be an amazing Special education teacher. Her experiences have surpassed my own . I see Sis watch her and not understand why she isn’t doing the same things. From Driving, to Dance team to Homecoming Queen, my oldest had the typical High school life. Sis is always there to cheer her sisters on in all they do but cant understand why she cant do them to.
My youngest will be getting her Drivers permit in January, and Sis pays close attention to this, “I want to drive someday” My husband came up with a good plan, we are going to purchase a Golf cart for Sis so she can drive, This terrifies me but also helps her dream come true. The thought of her behind the wheel of a car is horrifying, there is way to much going on there for her to handle at once.
So this got me thinking of the future a little more and I flashed forward to my girls Wedding day, and becoming Mothers… How could I give her these things? My heart broke when I looked into the future and saw Sis saying “I want a Husband and a Baby some day” These are the two things she will never know and that is unfair.
My daughter is incapable of taking care of herself and needs constant supervision. She doesn’t understand she is different and cant compute the reasoning behind the “No’s” All she see’s is her sisters get to do things Mama wont let her do. She will be with me till God calls me home. I bathe her and brush her hair , her teeth, help her get dressed , tie her shoes, Monitor her Blood sugars, administer her insulin and all her daily meds . I am her only source of entertainment. She is a people person and has no use for toys, books, movies, Kid stuff. Thousand of dollars we have spent trying to nurture her talents and wants but there are many things I cannot give her, the few things she really wants.
My Sis is a beautiful young lady with tons of strengths and courage and a family that is very proud of her in all she does . I am certainly facing an uphill battle but I will hold onto hope that one day she will get close to the things she wants, I will continue to fight and continue to look for ways to fill her days with happiness.
The first battle is driving, And I guess the rest will play out in time, but for today my little girl is “going to drive someday“, even if it is a golf cart.