I read this quote the other day...it was about feeling the butterflies die in your stomach...you know this feeling the feeling when you hear the "r" word...something derogatory towards you or someone you love...I have been feeling this way for awhile...and it's a culmination of a lot going on...we are now part of the the 47%...I should be excited...I thought I would be...but I am not...I am embarrassed that we cannot do everything for Maddie ourselves...I even considered not taking it...denying it after we waited 3+ years to get it...but when we got the news that Maddie was approved for the waiver all the butterflies went crazy in my tummy and then died...I cried...in part because Maddie will be supported...the hard part...I am know its a hand out...and in the very republican state I live in...this is not something to be proud of...I know that we cannot afford what Maddie needs...I am thankful...and I know it is necessary...Maddie will now get more therapy...all sorts of therapy....who knows she may just speak one day...Maddie will receive more OT and more speech in real life settings...she will receive water therapy and she will be able to go to the Down syndrome clinic in Denver for a complete work up...something our insurance would not pay for...I know this is the best thing for Maddie and for us financially...it made me think I need to just live in this moment of time...that I need to be grateful at this moment for the help Maddie is getting...not think of what others are thinking or saying...it is my insecurities...through this Maddie will get to go to a camp with other kiddos just like her and play and learn...I think Max and I will volunteer so we can get involved in our special needs community...I think it is time...time to break out of my fear of the future and the label I have put on us...I want my bubbly face back...the infectious laughter in my head...somewhere I got out of my Down syndrome funk and became scared of life...not scared of Maddie scared for Maddie about how we would make everything work...she got new glasses...I hate them...they slip down on her nose...this makes me sad...I cannot explain my resentful ness towards these glasses...I feel like they make her look like she was born with Down syndrome...I know she was...but I still forget...I still pretend that she is just my little girl...the other day talking about my future plans...I said it out loud...my plans have changed they now include Maddie...I have to figure out what we can do together...what we can share as a future...Maddie will need to work and probably will want to...so I think I need to start a business for her and I to share...again the living in the moment goes out the window...and I have to pull myself back in...but the reality is there...I must think about her and I...Wyoming does not have much for independent living so that is out...and if we leave the state she could loose her benefits....we are not moving and she is my responsibility...the mother-in-law house will work just fine...I get Maddie is 3...but when you have a huge responsibility and a community helping raise her...you have to be thought out, well planned and have good solid reasoning behind your actions...I am excited for Maddie and what the waiver will give her...New Years resolution stay in the moment and everything should be fine...
Potty training...I am not sure Maddie is interested or even feels the sensation yet to go to the potty...she has peed in the potty one time...
the dreaded r-word...as a parent of a child born with Down syndrome I have moments when the r-word brings on a panic attack...I become ang...
Ah, staying in the moment is difficult for me too. Like you said, Russell is only three but I plan way into the future. I think of Russell working one day and what that means and I plan for it. Part of our move to this Ranch was based on Russell's future. Brad wanted to be home more often so he can take Russell to work with him...Teach him to cowboy, teach him to drive the equipment, teach him life skills that will hopefully ensure he has a decent job, one he loves. It is very hard for me to stay in the moment...But I try.
ReplyDeleteAlso, don't feel guilty about Maddie getting approved for those services. It is her right...And as an American she is entitled to receive the services she needs, no matter how they are funded...Nothing should make you feel guilty about that.
I agree with Jenny, do not feel guilty about receiving services. She needs them and if it can get her the best care possible then by all means it's worth it 100%. We have Medicaid as backup for Lucas too but we are not on the waiver. We still qualify through SSI although this may have been our last year to qualify. Even so I will apply for both the waiver and the buy in program here in CO. I hate it that we live in a country where we have to feel guilty for help, it's not right. I would be lying if I said my pride wasn't hurt a little by the fact that we needed it too. After three years though, I've come to terms with it and I know it's the best thing for my Lucas. So by all means, celebrate!!
ReplyDeleteOkay so I don't understand your medical system over there whatsoever and I don't seem to have a grasp of the politics either because I am not sure why on earth people would make you feel guilty or not worthy of services ?r!! I think its fantastic that Maddie can get some more support. Here of course our services are "free" that is paid for by our taxes, Col and I have worked and been taxed big time I feel I have paid my share and when Owen works he will pay tax and will pay back his share so I don't feel Bad about it being "free". Hope Mads gets some good therapists and see some good outcomes.
ReplyDeletehttp://www.disabilityisnatural.com/explore/child-fam-educ
ReplyDeleteI think it's great she's going to get all of those extra services! I went from "not wanting or not thinking we needed them" to wanting as much therapy as we can get for Sutter! I often wish I could go back and do over the last 2.5 years and fight and push for as many services and therapy sessions possible! Never feel guilty, it's for Maddie and she deserves it!!!
ReplyDeleteWe will be buying a new house later this year or early next and my main focus is finding a house that has a MIL unit or space to build a studio for Sutter. It sometimes sucks that we have to think that far into the future, but I suppose it's better to be prepared now. I often wish Rich or I owned our own business so that I knew for certain Sutter would have a job or place to work when he gets older...a place that's "his"!
Bring on the therapy and lets get these kiddos talking, I know they have lots to say! :)
I understand what you are saying here more than you will ever realize. I never wanted services for my kid. I hate hand outs. I am a do-it-by-yourself kind of girl. I hate the fact Kristen has to have the extras and maybe that is why I fight it so hard myself. Thanks for being real and letting other moms know they are not alone in their thoughts. I too often times look at Kristen and think ...she looks like she has Down syndrome. I know she does...I forget too...even five years later...and still have my moments. At the end of the day, these services are what Maddie needs. I have finally figured out Kristen does need a little extra...and it is okay. It is hard for me to swallow..I still struggle..but it is okay. I too have learned to live more in the moment. Kristen has taught me that. Life is better that way overall too I have realized. Hugs to you.
ReplyDeleteIt's funny, in our rural, conservative area (just like yours) we have the same stigma on services. Darren was griping around the election about all the "handouts" people get and I had to remind him that EI is one of those "handout" programs....I'm glad she will be getting the services she needs, and when you come to Denver for the clinic you HAVE to let us know!!
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