so this summer has been un eventful filled with Bella growing and maturing and developing new skills such as setting her own alarm getting up and ready to attend a running group daily at to early for mom in the am aka 7 am.
I only wish she had some friends socially dealing with people is a trait I seem to have passed on and I too only have a handful of in real life friends. love the many who are online friends but I think you understand where I am coming at here. It's lonley and isolating sometimes to not have a buddy to tagg along and do things especially at 12 when your learning about who you are and what values and worth you have to offer the world. Developing self esteem and confidence is a challange for both Bella as well as myself but I think we both have come along way. Wednesday we have another trip to Ann Arbor U of M craninofaical clinic where Bella has been seen since she was 5 years old at least onces every year. Wednesday hubby Bella and I go to U of M crainofacial clinic it's a long day and 3 hours away from our area in Kalamazoo Michigan to Ann Arbor Michigan. We will have to get up at too early for mom 5 am for me to get up dressed ready and caffinated.
Then we leave about 7:00 am for a 10:00 am appoitment. This is one of the few places where we can get treatment for our genetic deletion and the symptoms that come from it to where doctors see kids (mostly kids) no adults like me who have 22q and we sit and talk with them one after the next all well meaning and all hoping to be somewhat helpful. all the specialist meet up in one room 10 different doctors and if you ask me most of it is a waste of time and insurance money. I do the refearl calls unless I talk with the social worker who really other then the speech doctor and the surgon is the only ones we truly need to be seen. I guess for insurance purposes we have to endure the long oreal
Bella has been going since she was 5 years old for follow up care and treament of the hypersanality and pharyngeal infucience Aka vpi she has graduated out of OT pt and speech and is doing extremely well does girls on the run has completed 3 5k races while fighting mild cerebral palsy on top of the typical 22q issues. missed 35 days of school yet was on honor roll with a B+ average.
She is 12 now and Aug 19 will start middle school she mainstream with an iep and level 2 services. I'm a trained parent mentor and advocate with national board on parent to parent and yes I have my own 22q issues to deal with and gasteroparies and such and a wife and step mom to 3 kids who do not have 22q. My father, myself and my 3 siblings one who passed away when he was 6 so I know the ups and downs way more then any "expert"
The feeling is like they "experts" are watching and learning from me and with each baited breath are shocked at all we are accomplishing the general statements is wow that's amazing you can do all that. Or Bella can do that wow. I mean yes in our own time and in our own way we can do many things such as...
Example wipe my butt. Okay that was just there to make sure you are stil reading, I may have lost half of my readership there but honestly I just am living life doing my thing and dealing with my own 22q issues teeth, mental health, gasteroparies while helping mini me learn to cope with her 22q issues which neither of us have the exact same symptoms as people with 22q are not carbon copies of one another just because we are missing genetic dna material. If you know genetics 101 its' all a matter of how large or small the missing piece is as well as other family genetics So Bella's adhd issues are amplifed because my loving husband has adhd thanks adam for that one. Dare I even say Bella has more of his dna then mine because I'm missing a piece of dna even though I carried her and birthed her. Yep I did all of that having 22q and the "experts are stunned" and the crowd goes wild!!! Okay maybe not everyone in the crowd but that's what if feels like. when the crowd doesn't know what to say to respond. I think it's only fair to say I don't honestly blame them it's not a known factor they are aware of yet until they personally experience all of what 22q has to offer the good the bad and the messy hard stuff to deal with.
I feel like Bella and I are like fishes in a fish bowl being watched and stared at poked at even sometimes with out any real concern for how feeling like a freak show makes us feel. I have not ever voiced that concern fully but it's getting old and I'm over the I'm your inspiration gig. With the amount of other people wanting to blog about youtube and 22q their life with it I encourage that more power to them. I'm hastag over it all. with not having had any real benefit other then wasting everyone time there they think they can educate me and to an extent they confirmed my fears, concerns and help me answer some questions regarding my kid. Any and all questions about me and my own health issues being and adult with 22q are still left un answered. Once again I'm left out and with only a few places to fit in. Uniquely made to stand out in a world that is unkind now more then ever to anyone outside of the norm. By the way what is normal any how? I educate the experts in return they get to doucment take "notes" which I never know if they ever truly read but that's why I refused another sleep study they wanted to do. She had them been there and done that video eeg's sleep studys and the works. My kid has been though enough it's time to Let her be a kid. If you are the praying kind we could use prayers and if your are not the praying kind we could use good vibes we are STILL trying to determ if we are going to go a head and do the vpi repair surgery since Bella was 5. I mean that was the point and why we started going.
here is my website where I have blogged about our journey we both have 22q. https://www.mommiesquietplace.com. The story updates for Bella is under the Bella story tab you can read mind in the Amanda's story tap. I would love new subscribers and some support and encouragement. Thanks so much and comments are turned off but feel free to subscribe and joined the facebook group 22qmommiesquietplace if you have any questions or comments. Thank you for reading my vent. love Amanda the frustated 22q momma