Light or Heavy?
I have been wondering what to write in this Blog. I keep changing my mind. Do I keep it joyful and light and concentrate on Michael and his accomplishments which bring us smiles every day?
Do I tell what is it like raising a disabled child and moving among the systems and the tears that go with that?
I have restarted this Blog many times now as this internal debate goes on.
Screw the hard stuff and explaining, we are going to Disneyland!
Michael is 3! Wonderful heavy 3. Kid is huge. We were gifted with a wheelchair by my sister's generous neighbors for Michael to grow into. After many many months of fighting with the system, we also FINALLY got him the wheelchair he needs now that is fitted to him and US. What a battle for that. It didn't happen before we made our trek to Disneyland with our wonderful CMMD family. We are very thankful it happened though!
This last week we traveled to California for a Myotonic Dystrophy Conference. The day before the conference, the parents with CMMD children got together at Disneyland. Finally got to meet many of the people in my virtual support group. It was fantastic. Michael LOVED the carousel. We got to ride two times in a row which was fortunate as trying to detach him was proving unsuccessful.
So what is it like to meet people with the same disease as Michael? Enlightening, loving and scary, all at the same time. Enlightening because you have "ah ha" moments. Loving, because we are all on this ride together and who can we turn to for support? Each other! The support and advice and warmth I have received from this group of individuals is a lesson in life and how we all should be for everyone, disease or not. Scary because you see a future. It may or may not be Michael's future. We all continue to fight and hope for these medical trials to be successful. We lift our voices to be heard.
I met a Pioneer Advocate for our disease and many other diseases/disabilities benefited as well. I had the pleasure of sharing a table and meeting Jane Harvey. Michael introduced us when he decided, as we got to the conference room, that he was going to walk over an meet her himself. I will just follow Michael's lead from now on. Jane was part of the original work on MD Care Act. She also helped to legislate for the ADA. Her daughter Lisa (my original life line) has carried on after her, along with her 9 year old Granddaughter Kayla, also having CMMD, who spoke last year in Washington DC. We all are so blessed to have these individuals fighting for us all.
Another big help to me this last couple months is Penni, an education advocate, also having a child with CMMD. I never would have gotten through this new world of IEPs and Special education without her pointing me in the right direction and telling us our rights. The education system was basically ready to write Michael off. Not YET! Steve attends preschool now with Michael and supports not only him but the class. Michael is using more words and trying more things and THAT is exactly what we hoped and suspected would happen. Michael is their teacher in CMMD. Don't underestimate our children!
Until next time, enjoy, love and LIVE. Michael is!
Do I tell what is it like raising a disabled child and moving among the systems and the tears that go with that?
I have restarted this Blog many times now as this internal debate goes on.
Screw the hard stuff and explaining, we are going to Disneyland!
Michael is 3! Wonderful heavy 3. Kid is huge. We were gifted with a wheelchair by my sister's generous neighbors for Michael to grow into. After many many months of fighting with the system, we also FINALLY got him the wheelchair he needs now that is fitted to him and US. What a battle for that. It didn't happen before we made our trek to Disneyland with our wonderful CMMD family. We are very thankful it happened though!
This last week we traveled to California for a Myotonic Dystrophy Conference. The day before the conference, the parents with CMMD children got together at Disneyland. Finally got to meet many of the people in my virtual support group. It was fantastic. Michael LOVED the carousel. We got to ride two times in a row which was fortunate as trying to detach him was proving unsuccessful.
So what is it like to meet people with the same disease as Michael? Enlightening, loving and scary, all at the same time. Enlightening because you have "ah ha" moments. Loving, because we are all on this ride together and who can we turn to for support? Each other! The support and advice and warmth I have received from this group of individuals is a lesson in life and how we all should be for everyone, disease or not. Scary because you see a future. It may or may not be Michael's future. We all continue to fight and hope for these medical trials to be successful. We lift our voices to be heard.
I met a Pioneer Advocate for our disease and many other diseases/disabilities benefited as well. I had the pleasure of sharing a table and meeting Jane Harvey. Michael introduced us when he decided, as we got to the conference room, that he was going to walk over an meet her himself. I will just follow Michael's lead from now on. Jane was part of the original work on MD Care Act. She also helped to legislate for the ADA. Her daughter Lisa (my original life line) has carried on after her, along with her 9 year old Granddaughter Kayla, also having CMMD, who spoke last year in Washington DC. We all are so blessed to have these individuals fighting for us all.
Another big help to me this last couple months is Penni, an education advocate, also having a child with CMMD. I never would have gotten through this new world of IEPs and Special education without her pointing me in the right direction and telling us our rights. The education system was basically ready to write Michael off. Not YET! Steve attends preschool now with Michael and supports not only him but the class. Michael is using more words and trying more things and THAT is exactly what we hoped and suspected would happen. Michael is their teacher in CMMD. Don't underestimate our children!
Until next time, enjoy, love and LIVE. Michael is!
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