It Takes A Village

So this incredible thing happened to us last week and I would like to share it.


On april 7th a brand new piece of adaptive equipment was released, It is called the Upsee .
It uses straps and harnesses to help a child walk with the support and power of an adult.  When I first saw this a few months ago it was a product a mom from one of my online support groups was trying to get patented. I loved it even then, and made a mental note to keep my eyes out for that thing!!


low and behold a few moths later she was approached by a reputable company who wanted to produce and sell her design, and the Upsee hit the market in the first part of April to a crowd of very excited parents.by April 9th my Facebook news feed was FULL of pictures of kids around the world getting to experience the world from a first person perspective. it was absolutely beautiful.


I am not sure that mothers of "typical" kids really realize how many things are not a part of our childs life. Its not something I would ever hold against them though, I know I never thought about a lot of this stuff until I HAD to.. so I totally get it. (and that's why I tell you guys! )
However just think about this.. NEVER a single day of sophias life has she had a change to stand on her own two feet and walk up to a flower, a tree, or a fence . Never has she gotten to walk down the street on her own and feel the sun on her face and feel the gravel under her shoes.. it breaks my heart to think about how every experience she has ever had has been in the arms of another person 5 -6 feet in the air, or strapped into some seat detached from her environment, or inside some big crazy frame stuck dragging a ton of extra weight just to move at all..


one morning I decided I HAD to make this happen for her. She HAS to be able to have this experience. It suddenly meant everything to me to be able to give my child that chance. But there was only one very large issue. it is a 500 dollar piece of equipment coming from lisband Ireland or some crazy European place. Turns out I don't have 500 dollars laying around .. and it would take nothing short of a small miracle to get it. I am never without something I need.. ever.. but rarely do we ever have money for things we just want... wants aren't a big part of our family.


A fellow special needs mother was using a fund raising website to help raise funds associated with medical equipment and home improvements to help the baby. They encouraged other mother who may need help to lower your sword of pride and ASK FOR HELP... She had such an overwhelming response that she said there must be more good people out there that want to help our kids, who are we to stand in their way..? just TRY.. put it out there.. so I took one very deep breath and disarmed my super mom pride.. and created a page.


I just put a small bit of information up about PCH and Sophias fight against it, a link to our blog and a few photos of that irresistible smile... along with a very humbled personal message from myself asking for help to give Sophia an experience someone who fights as hard as she does deserves.. it hurt me to have to admit to everyone that I could not do something for Sophia. It isn't something I normally would ever admit to.. ever...


then something incredible happened....


EVERYONE.. well seemed to me to be everyone.. started sharing our link and circulating the word amongst their loved ones.. and family and friends and even people ive never even spoken to were all rallying around my little girl, trying to help me get her this experience.


it was enough to keep me in tears for nearly 24 hours. you don't realize when your in the center of this shit storm that there really are so many people standing on the sidelines just waiting for you to ask for some help. it was shocking. I liken my life to living in the eye of the storm. I have a deep level of personal peace that I draw from to keep me and Sophia on and evenemotional level most of the time.. but things are ALWAYS just raging around us.. and I often cant keep my focus on how much people do care. you get stressed and exhausted and angry, oh you get so so angry... and you get sad and then you reach a new level of exhaustion that you didn't realize you could actually operate on.. then you get sad and frustrated again... honestly that's what my emotions are always doing to me under my carefully constructed smile.. and I don't hardly ever see genuine good in complete strangers. unfortunately having a child who is special needs shows you the ugly in the world..  and its hard to see past sometimes..


but in less the 48 hours we received almost 200 shares of our go fund me page and 950.00 dollars!!!!
it was like someone cracked the back door of my heart open and let the light shine straight through my chest.. I was so happy that I felt like I was radiating light...it just floors you when THAT MANY people show your child love and compassion.. it really made me think twice about why I ever felt like we were isolated.. SO MANY people reaching out to me wanting to help in any way they can. it was amazing. my daughter has never looked even one on them in the eye. never hugged any of them . never even said hello.  Yet amazingly, each of them felt inclined to help her get this opportunity.


In Addition to the upsee we raised enough to buy Sophia a Go To seat from the same company. A go to seat in a seating insert that can be used in a shopping cart or attach to any normal chair anywhere you go. It has a five point harness system and I high supportive back so that sophi can have comfortable and proper support all the time.


Another thing I cant do right now with Sophia is take her out by myself. anywhere really.. because she has sensory defensiveness, meaning she doesn't like unfamiliar places and textures
 she clams up. gets very tense and uncomfortable. The shopping carts are hard cold loud and do not have any measure of appropriate support for her. I can get her into one on a really good day for maybe 5 min. before she gets upset. so I cant do groceries, go to target, walmart, clothes shopping alone ever because I need someone to hold Sophia for me or be able to cherry pick the items I need and push the cart while I carry or push her. We also don't really go out to eat anymore. because Sophia is getting to big to be held on our lap in the booths which is what we used to do when she got to big to be carried in her carseat.. but now she flails her arms and would clear our table.. but just like the shopping carts  most resturaunt high chairs and HUGE and hard and low and have one lap belt .. which is not enough support for Sophia.. So we just order out.. but its just one more thing we cant  do like a " normal family" and it sucks ... I hate it..


But with the go to seat I CAN bring her out alone..!!! I don't know why but the fact that I cant go run my errrands without bothering my hubby.. has always urked me... like what kind of a mother cant take her kid to the store or out to eat??!?!! I know its not my fault. but still it leaves me feeling like I am not mom enough. More importantly though it leaves me feeling like I am not doing enough to help her live in our world.. she deserves to be comfortable in public settings.. she shouldn't have to be nervous at stop n shop for god sake... its enough to bring me to tears .. on a very deep maternal level I have felt like a failure since the day we got our first diagnosis.. its just comes and goes like the tides.. flaring up a few times daily. usually in strong connection to the moon... (early morning and late night are the hardest on me)


When you are raised on one income and you have been surviving on one income for most of your life.. you get a strong understanding of the value of a dollar.. so I just want to thank each individual who donated... some as high as 200 dollars and some as small as a ten .. but you know what??!?! that ten dollars means just as much to me as the 200 does.. because I know that is money out of someones pocket, I know that's a meal, a tank of gas or a bill that could have been paid. and yet they choose to GIVE IT AWAY for NO REAL REASON.. words fail even someone who talks as much as I do.. you gusy have done for her what I couldn't.. I don't think I will ever be able to convey how afraid I am of not being able to provide for this child.. it is my driving force in life.. that fear of not being enough.. it consumes me.  But knowing and seeing that I have so many genuine souls so many good hearts behind me to whisper "you got this girl" ," tomorrows a new chance" , " your doing a great job", "god bless her " those small words go right to the deep dark spot in my soul that I cant get the light into.. each of you guys punch a small hole in that sadness and that fear.. with each of your comments and each of your helping hands.. I am a little less afraid of not being able to do it all, all the time..


and that is something that money can not buy. and for that I am eternally grateful to you all.


when I was 7 I was in chorus and we sang the song "it takes a whole village to raise a child" .
I don't believe in coincidences. At 7 I loved that song I thought if the world really did the things in this song, it would be a better place to live. Now im not really sure that rule would work out so great in al villages.. hell im lucky to find two people who can raise a kid together these days..


I am lucky enough to be part of a village that harnessed this concept and brought it to fruition.

thank you for not leaving me hanging guys... it would have been epically awful if I put that up and got NO response.. just know what you all have given me is so much deeper then the dollar can go. What you have given Sophia is an amazing chance to feel her world from a first person point of view. I cant wait to be able to introduce her to the world. keep on the look out for videos and updates!!!




I placed the order already and I am waiting to hear when we can expect a delivery !!! woohoo!

Sophias Transition to pre-K

The time has arrived for Sophia to age out of the birth to three organization..


Because she's aging out of the B-3 organization she is entitled to preschool services, the state of Connecticut is required to ensure that she receives services in the most convenient and helpful way for her so that means that they pay to have her put in preschool as opposed to requiring us to seek outpatient therapy services for her at the hospital ( which we do anyways , because we love her PT at ccmc)

Per usual when the state decides that they're going to pay for something they also decide that they are entitled to all types of information and answers which I have no problem providing....
So we have been going through this transition process with the Wethersfield Board of Education (they get all the 'answers' and determine if Sophia is elligable to special education services)


As her mother I really do not feel that my three-year-old child is ready to be in a preschool program. I'm not there, she's being cared for by strangers, surrounded by strangers, in a strange building, in a strange place, for hours every day...... without Mickey Mouse..... without any of the comforts of home that she's used to, without the ability to speak, defend herself or let her preferences be known.
 If my child was not special-needs I would never put them in a preschool program at three years old as a parent it's not something that I would do. I would spend the time with my child...Being special needs or not really wasn't the issue for me here.... it's just that I don't feel that three-year-olds belong in a preschool program and if I can teach them at home I would rather do that I would be actively engaged with my" typical" three-year-old child, teaching them letters numbers and shapes at home I wouldn't leave that up to a stranger and I certainly would never pay out-of-pocket for it....
So I wasn't about to let the state bully me into doing something with my child that I wasn't comfortable with...
Yet when I talk to people about holding her back from the preschool program I got the looks and the held breaths, are you sures and again and put in the position where I have to defend that I know what's best for my child and that what's good for other kids and what's good for the masses isn't good for my child. Think about it by the time that most people put their kids in school they can eat by themselves, drink by themselves, tell someone one if something hurts or if they're being bullied, they can let people know that they're hungry or that there sad or that they missed their mom.
They can come home and tell their mom if someone is touches them in an inappropriate place or done something inappropriate in front of them. They can come home and tell their parents if they had a bad day at school or if their stressed out...
They can come home and open their mouth and tell their parents anything about their day all of those things are taken from my daughter. Imagine your child without any of those tools would you feel safe and comfortable trusting them with complete strangers for hours on end. In diapers with a bottle in school?!?!  I really don't think you would!!! 

Every time I brought up the subject of what I thought was right for my child and trying to alter the idea of putting Sophia in preschool I was immediately met with "well other kids… And well for most moms… And you know everybody goes through this…"

One day in the middle of a therapy session I flipped out on my therapist saying listen ...
"I don't give a flying rats ass what other moms have to do I don't give a flying monkey fuck about what other kids do or what's typical for them or what works and what doesn't work I just simply do not care about anything pertaining to any child other than my own and what I feel is right for my child. Sophia is one of 54 children in the world with her disease not a single one of them currently living in the state of Connecticut so I would love to know how all of these people in my life pretense from time to time like they know what's best or even that their experience is relevant because as far as I'm concerned I'm on a level playing field with these professionals they know as much about my daughter is I do if not less and most circumstances I am the smartest person in the room when it comes to my daughter doctorates be damned.... "
I've had learned fast and the hard way that I am the biggest loudest supporter of my child that no one knows her better than I do and I cannot let people push me around into making decisions for her I cannot be pressured into what other people think might be right.. 

So one day I tell people you know what either she gets home services, we homeschool her or she gets nothing  and I walk....
 I just woke up one morning and decided I don't care what any of you think I don't care what any of you will do I don't care with the repercussions are I will pay out-of-pocket to homeschool my child if I cannot get homebound services for her through the school system..... but I will not and cannot be pressured into doing something with my child but I'm not comfortable doing....
 I cannot risk the progress that we have made. I cannot put her in a position to digress with skills or her communication. I just can't afford to lose a single skill that I've spent the past 2 3/4 years fighting for with her.. That IS EXACTLY what would happen if I put her in school and she wasn't being properly watched or properly communicated with, if she felt like she wasn't being heard or she gets overly frustrated she clams up stops trying and we would lose things.
This is not a risk I'm going to take under any circumstance!  

So basically with nothing more than ruthless determination I decided to single-handedly take on the Wethersfield Department of Education. I set appointments with my pediatrician and with Sophia's neurologist to discuss my concerns I did my research and found out that all I need his a letter from her doctor or a doctor stating that they agree with me , that Sophia would be put at risk if put into the school system and that we need homebound services for her .  

In the days leading up to my first transition meeting our B-3 therapists are coaching me "try not to be too aggressive, you get more flies with sugar than you do with salt!"
 Basically telling me to tone it down. I guess they thought i was going to jump in and rip someone's throat out as soon as they show up for our meeting...
In their defense though I have not been shy with them about what I want for my daughter nor have I been shy about the fact that I don't like being pushed around or when people try to put Sophia into their square of acceptability ...

I take my first transition meeting with three people from the Wethersfield Department of Education Sophia's two birth to three therapists and myself in my home to discuss expectations and procedure and just the general overview of what is going to occur in this transition and I look all of these professionals right in the eye and tell them I don't care what it takes but I will get my child services in her home .
 I calmly explained to them all of Sophia's health issues all of the potential health problems that could come up all of the things that I do for her and her day. Just exactly how dependent she is upon me and exactly what I would expect out of an aid if I were to put her in school and then I finish it all up by telling them that "if I did not feel that Sophia is properly serviced I will walk on the spot .
 I  have a plan to submit her in kindergarten only when and if I feel that she is ready for that. I am not attached to the idea of preschool and I am simply allowing this meeting to occur to test the waters ..."

They all seem to agree with me that Sophia does seem to be on the small side and that she seems to be kind of delicate and they informed me that if I can obtain this letter that they have a system set up where they send people to the house and she will get her full preschool day at home with me and I'm thrilled when I hear this!!

When the meeting is over my therapist congratulate me and give me hugs on being so great in my delivery was amazing and I did everything just right but I did things my way I said it the way I wanted to say it. I came across how I wanted to. I didn't listen to their coaching and listen to their tips and listen to their help because I didn't give a shit if these people were overwhelmed or thought I was intimidating they do this all the time. I need to be mama bear first always, after that I can be kind and sweet and well mannered. But not until I know I don't need my  "teeth"

 Now when I say "team Sophia" I call it a team for a reason because all of my medical professionals for the most part admit that they don't know very much more than I do about this they look at me as an ally they look at me as someone who's an equal to them when it comes to Sophia's treatment and that's absolutely key in Sophia's success.
So I knew that I wouldn't have a hard time getting this letter because all of her doctors take me very seriously and I don't have to pull out my muscle and my attitude when it comes to them they just hear what I have to say and take it for what it is. I schedule a meeting with Sophia's pediatrician to explain the situation and my concerns and without question or hesitation she write me the letter that I need, I have it in my hands within 24 hours of my appointment. My therapists are completely in shock that my pediatrician didn't fight me tooth and nail to give me the letter and I call a member of the Wethersfield school board to inform them that I have in fact obtained the letter and that we need to proceed with homebound services. They didn't sound surprised. but they couldn't really believe that I managed to get it all done so fast....
Approaching this Friday is our second transition meeting... this meeting will have five people from the Wethersfield school board, Sophia's birth to three therapists, myself and Sophia all in my home to discuss therapeutic techniques and approaches that have and haven't worked in the past. to discuss Sophia's progress overall and so that we can formulate some sort of battle plan for moving forward in the future.
 As of May 1st  Sophia will be in preschool! She will be receiving preschool services here in our home with me as her primary educator working in conjunction with therapists.. speech therapist, physical therapist and occupational therapist from the school as well as Sophie's preschool teacher coming in meeting with us once a week..


Honestly I'm terrified.... I don't know if I'm making the right choice.... I don't know if I should have me put her in school ... No I'm staying true to what I know that she needs......
But every single victory for her that I make, cuts myself down.. NOT because I'm not happy or proud, she's going to get what she needs to succeed.
But underneath my pride is pain because it's just one more thing she can't take part in. I guess in my mind its irrelevant that I wouldn't have submitted a typical child to preschool I never would've done it anyways I just know myself I wouldn't . But somehow Sophia not being able to go into preschool keeps me up at night .....I think maybe should like the kids, maybe she would like environment , maybe she would have fun, maybe she would like to be away from me she might get sick of me....
None of that really matters though.... the point is i'm much more comfortable with my choice to keep her here.
 I'm confident in my choice that this is what's right for her and I'm confident in my ability to keep her socialized with other kids so I guess as usual I'm just following my heart blindfolded... Parenting by faith not by sight.
I'll be really honest there's not really a whole lot more besides that feeling in the pit of my stomach that's guiding me on this.
My family, my medical team, my friends, even my fiancé, everyone looks to me to decide how they feel about things and for me to be their compass as to what's right and what's wrong for her. They'll support me 110% that's not a question but it is all on my shoulders to make these decisions.  Her father would help me in anything but he knows that I am the primary caregiver that I am the one that's going to be doing it so he follows my lead .
It's nice because when things go right, I get to take the credit, my name goes up in shining lights and everyone congratulates me for a job well done but its my skin if this goes wrong and I don't even know homeschool could go wrong but I guess that's just my mind and the way that things work, the way that I think. The sky is always falling.... lol


ill let you guys know how things go Friday!!


thanks so much for reading! ill be redoing the page soon , maybe making a website!! stay tuned :)