Friday, March 25, 2011

Life Can be an Emotional Roller Coaster

Well the title of this blog post says it all! Life really can be an emotional roller coaster. It is also what you make of it. Sometimes a a mom of a special needs child you feel like such a failure when things aren't on this certain timeline that you have set for yourself and your child. Now I know that I am not really a failure, but sometimes you just think, well maybe if I done more floor time, or maybe if I had done more theraputic listening in the last week, or maybe if I had put him in his stander everyday instead of only 5 days this week, and oh I forgot to do his mouth excercizes! Well the truth is I am not really in control( much to my surprise). And to be honest I really don't want to be. Grayson has come so far, and has absolutely blown doctors minds with his progress, and I think I just need to let him be a kid some days ya know! The pressure to succeed is so great for a typical child, and for a child with disabilities the pressure can be even greater, because you are truly fighting for their everything you feel like. Society is very judgemental, and when they see a child/person with disabilities or special needs it almost seems they are discredited immediately for how valuable they are. Well I am here to tell you that our son is extremely valuable reguardless of his disabilities. He provides jobs for 11 doctors, 5 therapists, 1 nutritionist, a preschool teacher, an oxygen delivery truck driver, UPS drivers, 2 medical supply companies, and lots of technicians at kosair that run labs, xrays, ultrasounds, mri's, and ct scans, and he is just one little boy! I am a very positive person, and I know that we are truly chosen to be this amazing little boy's parents, and WE are his voice, his advocate, and I will do whatever I can to make his life easier. So I feel like it is my job as his mommy to educate people on the truth about his value and worth. God has made him perfect in is image so who are we as society to ever judge what a person looks like? I often wonder what people are thinking when they stare at us when we go out, it makes me think lots of different possibilities. Most of the time the kids are the cutest, they wanna come over and see his wheelchair and then usually get a good look up and down at him, then they just smile at him, as if they know there is something special about him, I just love that! I really look at everything so different as if God gave me two new eyes when he gave me Grayson. I mean at the end of the day aren's we all God's children? Does it really matter where you live, go to school, or whether you are democrat or republican, aren't we supposed to pray for our neighbors and take care of eachother and be Christlike? I am just saying think about what words you say, does it bring positive or negative to the situation? Would something that you say in joking be hurtful to others? I know I have been guilty of that, many times. Recently there was a nation wide honored day to end the "R" word (retard, or retarded). Ooooohh how I can't stand that word. It is so hurtful! Please if you use that word as a joke, in a joke, or to make fun of someone even if they aren't "retarded" STOP, please choose something else to say. Think about what that word really means and how someone close to you may feel very hurt by that word. Think about how you would feel if your son or daughter had disabilities or special needs how that would make you feel to hear that word used as a joke to make fun of someone or a situation. I can tell you it does not feel good and it hurts. My blog posts are usually upbeat, but this is something I had to get off my chest. My prayer is that whoever reads this will maybe look at things a little differently and then think about things differently, then say things a little differently. We are all valuable:)


  1. Congratulations! You have a beautiful son, he is amazing. I just had my son Zach 3 weeks ago, and he is still in the Nicu & he will have "special needs" that we are trying to figure out what they are. I pump while I read blogs from other moms of special needs kiddos, and I realized that everyone of us SN or not has value, each baby is knit together by God in the womb, fearfully & wonderfully made, designed to fulfill God's purpose. Love psalm 139. God bless you and your gorgeous family!
    Clara Harmonson

    1. Hi Clara, I am sorry I am just now replying to you! Congratulations on your new sweet baby, I remember the NICU very well and know the stress of that place is at times unbearable. My prayers are with you and Zach as well as your doctors. I too pumped while I was there and at times that was the only way I felt like I was able to contribute, so good job for doing that he will be a stronger boy because of you doing that for him! I pray you get to go home soon, xx