Well anyone who reads this knows just how crazy that things are for me there are more unknowns than any one person should ever have but that's how it is. I get used to doing things on my own because that's how it is. I get used to snide comments and looks because that's how it is. I get used to my things being thrown around because that's how it is. I cry and I smile because that's how it is. I keep busy and work so very hard , because that's what I am supposed to do. I hold my children and tell them that I am so very sorry, but everything will be OK because that's what I have to tell them that's what I want them to believe......
Mariska might need surgery, going to her conference might not happen, Scottish Rite next week can they help her achy bones ? The church is falling apart in sand, I need to find a church where my heart fits and that is terrifying , I am struggling in school physical science is H.A.R.D and I am not doing well when I have to, its not an option to fail, I have one math class to take this summer and its hard, really hard, I am supposed to start student teaching in the fall, what about the kids after school, My heart aches over my past, its so much better but its in a different achy place and I want to be done, I don't want it to hurt anymore and am scared that people are going to get very tired of me. I am living in my mothers house and she doesn't want me there and until I get a job there is really nothing i can do about it. So our things are not respected, we are not respected, we are told often just how much room we are taking up and this house that was once ours has become "HERS". SO we just don't belong. I often am running around like a chicken with my head cut off making sure that Vincent and Mariska's stuff is not where it shouldn't be , I am doing all the things that need to get done, laundry, dinner, homework, dishes, animals and she sits with her feet up saying " A woman's work is never done and laughs doing nothing to help me. That is MY world. Fine don't help me but don't rub it in either. And I have to smile and apologize to my children that I am so very sorry and soon as soon as we can we will have our own place. A few friends have had some really big things going on and I want to make it better and I can't. My sister Angela in Boston is having a really hard time and I feel super guilty about that, I want to save her make it all better and again I can't. I want to give some of the best people I know a baby , I want that for them like I need air and I can't. I want cancer to go away and I can't and I say but they are a great family, he is funny and he is a good dad but nothing changes and I want it to. I want people to stop hating others, for whatever reason wouldn't things just be better if we could accept people for who they were ? I am not sure how next semester my last year at UNT is going to be paid for, financial aid is done there is nothing left, I have taken too long to finish school. I am hoping to appeal and get that help but yet a HUGE unknown. There are things beyond words that have no words but.........
I keep smiling, I keep breathing but my spirit, my heart is heavy and the holes are gushing.
After a really rough night in the Callahan house, This morning Vincent decided to call 911. So as we are walking out the door to go to school a police officer is walking to our front door asking if everything is all right... Are we all right ? Well yes in some senses we are all right..... BUT..... I want to say do you have a minute ? I know you don't know me and don't really care but I have some questions I need some advise ? What am I supposed to do about school ? Why am I unlovable to my mother ? Why does she hate me sooo ? Why have my children and i become outsiders in a place that was once ours? What should I be doing ? What am i doing wrong so I can do things different ? What should I do here, what do you think ? I need some input , some ideas, a shoulder even , maybe just maybe ? You know parents are the ones that are supposed to be there no matter what, you are supposed to be able to talk to them and get some input, ask what in the world you are supposed to do !!! Well that is not an option, SO now what ? there is no extended family, no husband. There is my brother but he hears what he wants to hear he makes excuses and shuts you off when he doesn't or can't hear anymore. So I am once again left with me and that's kinda funny being the big chicken that I am, who doesn't have a clue. All of these huge decisions are on my back. There are certain people that are supposed to be there ALL the time and they just aren't. SO I keep walking keep breathing and someday soon really soon I need a break.
This morning I opened my email to find all of the registration stuff for The conference about Mariska's genetic disorder. And I just started to cry. I have always kept a smile well that's OK, its just Mariska its not a big deal things could be a lot worse. It was a friend of mine who said something like its OK to be sad that she is different. Yes it could be a lot worse but its OK to grieve. Well that sad hit me hard. Really really hard this morning.
Mariska has always been my Mariska but when we recently had our pictures taken one of the pictures, made me cry because I felt like her disorder was screaming at me and I just wanted it to go away. Please don't get me wrong, I love every inch of her, from her little soft curls, to her misshapen little toes but lately her symptoms seems to be showing more and more and it breaks my heart. She feels she is different and as her mom I want her to feel normal and to fit in, in all the ways that I never did. She is different she has Ectodermal Dysplacia : TRPS syndrome.
I remember when she was born oh goodness the girl was born with a nose. It was different, it was rounder than usual, it was more pronounced. It took me a few days and I said to my mom look at her little nose. She grew into that little nose and it became all her own. We always called it her beak , it was just something special about her. I can remember her being a little older and we would ask her where is your beak, that was just her and we loved that little nose. I remember her first pediatrician asking me "What happened to her nose ?" I was a little in shock, like how dare her ask me that that's her little nose and I LOVE it! I think I knew from early on that there was something different. The poor thing was bald as anything, and everyone always called her a boy no matter how much pink the poor girl was wearing. She looked a little different, I wasn't sure what it was exactly but she was different. She was later doing everything and her Dr's said well you are just comparing them because they are twins she is fine. But that was not the case, they were always Vincent and Mariska and so different in every way I was not at all comparing them. She held her head up way later, she didn't sit up on her own for a long time so many things were different. Her teeth came in so very late, She always struggled with congestion, oh the poor thing had such trouble breathing sometimes, ex specially at night. Each year at her check up they would say don't worry about it she is fine, she just is developing a little later. I had that gut feeling, something wasn't right. And her hair, it just wouldn't grow ! People told me to use horse shampoo and tomato juice, they kept telling me oh it will grow give it a year.... I gave it one ...two....three...four....five still no hair.
Finally the summer before second grade, they give us a referral to the Dermatologist. I refused to take their we'll wait and see attitude anymore. I needed some answers. If they told me nope that is Just Mariska fine then tell me but I needed to know for sure. With-in ten minutes of seeing her they were using big long words and showing me pictures that I really didn't want to see. I was scared and I didn't know what that meant for my sweet amazing, baby girl. They took hair samples sent her for blood work . I was in a little bit of a panic honestly, the Nurse practitioner walked out saying she would be right back and walked in with two other Dr's they were talking touching every inch of her little face and head and then they walked out once again saying they would be right back. I am trying to smile for Mariska who doesn't have a clue why these people are poking and prodding her. Then one of them comes back in with this picture and says well this is what we think she has and writes it down on a piece of paper. WOW, I had some answers but those answers only brought more questions. What is this ? What does it mean ? What can I do ? Did I cause this ? We are sent away with two pages of information since little is known about it and an appointment to see a geneticist, that we will have to wait six months for.
It was not life threatening so I was relieved but how will this affect her life, how do we need to do things different, what does this mean for my Mariska Anne ? I did so much research over the next few months and finding out all that I could. There is not a lot known and it affects each individual child so differently, that its a kind of wait and see.
The geneticist also had little information. They said yes we think this is the type of Ectodermal Dysplacia that she has but gave me little information. They said that if I needed anything to make another appointment. Since hers is not very severe there are few outward signs, she doesn't sweat much, her nose is different, her eyes are closer together, her little toes are different, I could go on and on but there are lots of little things that do affect her day to day. I am sad. We do not know where it came from. I still wonder if it was something that I did, maybe was it was because of how she was conceived no answers its just something that happens. So we go on, we use her cooling vest for super hot days, we have gotten her a wig that should be in any day, we need to find out more about her little bones that ache , her little fingers that bother her, her skin rashes that she gets but we are moving forward. I am so looking forward to this conference and maybe finding some more answers but really Nothing will change I have more information that I will be grateful for. But Mariska will always be my sweet Mariska.
In the good things that this isn't as bad as a lot of cases I am sad for her sometimes that she is different, as much as I feel for her she feels it too. And it breaks my heart. She smiles through it all but her little heart gets sad too. SO today I am sad that she has TRPS, I am sad that she doesn't have hair, and that she aches, and that she is different. I am sad she will have to have genetic testing when she decided to have children of her own. So much to think about so many questions to ask ?? So I will write them all down and hopefully take them to the conference.
BUT.......Today I am just sad that this is something she will have to deal with. I am just so sad for her. And I pray that I can nurture her spirit and help her see that beauty that she has, it just glows for everyone to see. Her little heart is something incredible, she shows such strength each and every day. Oh I love that sweet girl with all that I am, and I hope she can see just how special that she is for this day and every day of her life.
I love you more my amazing kind daughter, we will make it through it all. I promise.
Kinda funny writing this today, there are so many thoughts and feelings swirling around its like I am in the middle of a huge tornado. I have written and erased this a million times thinking it didn't make sense or went in to many different directions but the truth is that's exactly where my mind is. I am being pulled in so many different directions I myself can't keep things straight. There are way to many details to explain, so many words I want to convey and I am not sure of almost anything.
As a little kid church was never a good thing. We would all go to church together as one big happy family and pretend that we were the perfect picture of a god loving house. We would walk in front of everyone bringing the wine and communion to the front. I was made to do the music sheets in the front of the whole church which was devastating when all I wanted to do was hide. On the way home there would be many F*** Y**'s by my father, often silence for days and the same abuse that went on and on, but if someone from church came over boy we could all turn it on and pretend that everything was just awesome . We went to this same catholic church from when they were in a storefront until we had our own building in the Colony. We would have the priest over for dinner, my parents were involved in everything but nothing was real nothing was true. I was a witness to everyone talking about everyone , people not liking the priest and I would just watch. I watched the hypocrisy, I watched the evil in people and I didn't understand. I can say that I never really believed in god even as a little kid. The life that I lived God was no where to be found. At 5 I would pray to die every single night so I didn't have to endure my father. At the same time he would read the bible out loud and pretend to be this god loving man. We would all hold hands and pray before bed, and we would always have to ask my father to forgive us, for what I still don't know but it kept the peace at least sometimes. The people that hurt me as a child went to that same church. My father , Albert and later the others from "The Weekend". I would sit there thinking well if this is what god and church is I want nothing to do with it. And God well he wasn't answering my prayers so I figured I was alone in this, this was not something that I wanted to believe in that I knew for sure. As I got older my parents got involved in the charismatic thing and as a kid that's pretty scary, there was speaking in tongues and praying over people, and again I just watched. I can remember having to take confirmation classes and I finally said I don't believe in this, I don't want to go, this doesn't mean anything to me and you would have thought I was going to blow up a building by peoples reactions ! What do you mean well you are going to have to talk to the priest blah blah, I ended up finishing but it didn't mean anything to me. The only thing i got was another name Ruth. As a teen the priest ended up leaving there was a lot of Drama and later I found out he was charged with molesting someone and of coarse the catholic thing to do was just to move him to another parish. That is the church that I grew up in. I didn't believe in God and wanted nothing to do with any of it ever.
But years, many years later I was led to James Wiebe. Which is totally crazy. I was looking for a counselor and his name kept coming up over and over. This guy looked so young I was like yea right he is going to help me, I felt like such a mess, my heart was so sad, and felt so gross and disgusting. I sent him an email and I heard right back, he was kind, there was something different about him and I made an appointment. I am a little OK, a lot weird about directions and finding where I am going. So the day before my appointment I realize that James is in a church ! Me in a church I mean seriously this is not going to work I don't believe in God and this young guy ( Kinda Funny) won't be able to help me, I was a "Case". It was too late to cancel the appointment, so I showed up. I showed up and went to the little building that was next door. I was terrified, scared I was going to get struck by lightning or something I didn't want him to think I thought bad about him but god and religion was just not my thing. I walked into the office and everyone was more than nice , to me they were beyond kind and I was more than shocked I needed kindness so much and they were there giving it to me just because. That very first night there was something different about this place about these people that I had never experienced in my entire life. And I thought OK I will try this a few times and see what happens. James never pushed god or religion. There were a few times it was mentioned but that's just who he was. A few times he would invite me to different things that were going on at the church and I was polite and said really we might have a tornado or lightning bolts may strike if I walk into a church and he would just smile. Then came Christmas and he was in the Christmas play and again he invited me and something inside changed, this time I went. I felt so much love being there, I felt connection, I felt important I felt so many things. And in one of the last scenes as James, who played the angel, which was quite perfect, was walking out he took the time to stop and he waved. He took the time to stop and wave at me. Something so simple that meant so much, I can still see it like it was yesterday. I was noticed in this place and I had not been noticed my entire life. And from then on I went there every Sunday and The Corners became my home. I continued to see James and everyone was so true and so real they did what they said. I would cry to James but these people here are so kind and so true, I never once in my life ever experienced anything like this. I got to meet his Wife Amy and I always say I loved her before I knew her, she just accepted me. In my perfect dork fashion the first thing I ever said to Amy was " I just love James" and she laughed and said yea I kinda love him too. So me and that was ok. People were not fake they were honest and real and so accepting even in my unbelief. I was totally accepted from the first moment with open arms.
There were oh so many changes we sold the building, lots of people left, I helped pack the church, the children's department. We moved to a new place I was there when it was bare walls scrubbing the paint off the windows getting the children's department ready. I was there for it all and I loved oh how I loved the people there, the first time i met Carrie Rogers was scraping the paint off those windows and I remember thinking wow she is so nice too. I had found a home and I was really a part of it, I was in a life group and I wasn't so afraid anymore. I met Carrie and Julie and found friends ha me having friends. Then more changes, more people leaving. I am kinda on the outside watching these changes and thinking that's OK things will be fine, more people that I love leaving, that had showed me such kindness, then Pastor Randy is stepping down and we are looking for a new Pastor. Not much communication anywhere I am feeling further and further away. I am so new to believing in God and still have so many questions I get lost in the shuffle. I long for the place that this church used to be. I know change is a good thing, but I long for it to be the kind of place that it once was. The place that I first walked into almost three years ago.
This is where my heart is so sad, it actually aches and I can't contain the tears. I never imagined I would be in this place and know such amazing people. It will be three years this summer , the most constant in my life ever and it may be time for me to leave. I am so afraid that I am often beyond words. I was really and truly a part of something beautiful and amazing . I was a part of something miraculous. And today I struggle is this is my place anymore ? I found this place by pure accident and yes it was a church and I would have never gone if I knew that but I did go and I found this place. I met the most amazing kind people that will be in my heart forever. I am still in awe of the kindness and love that were shown to me in the beginning from that very first day just because I was who I was. People there treated me like i had never been treated. When I was too gross and disgusting to even look at James, he held my hand and said I was not. When the tears wouldn't stop Carrie came and held me and said I would be OK. When I finally accepted God I got the most amazing Email from Amy and she was so excited for me. When I was doubting and had so many questions Julie bought me a book and was going thru it with me. When I was so sad Carrie W and Christie took me to the Zoo. All those things were experienced in this place with these amazing people and I am so afraid that I am going to loose that. These people have seen my heart and showed me that there is kindness out there. I DO NOT want to loose these people, I never in my entire life have known people like this in a place like this. These people have changed my life, and to think about leaving is heartbreaking. This is the only kind honest place I have ever known. I have seen such truth and light here and I know that will never change, but I wish for things to be like they were , the togetherness the community. Somehow someway I was lead here and I connected to these people ..... Oh I know that everything changes and I have been so flexible, I know nothing stays the same its a fact of life but right now I am not strong enough, it feels like sand seeping through my fingers, the more that I try to hold on the further away things become. I want to push it all away thinking it will be easier to make that final decision and at the same time I long for that connection with people more than anything. At the same time I want so much to be a part, I am pushing it away. I don't fit in this place like i once did. That become so glaringly clear last Saturday.
I went and things were different people were different people were pushed in the background that I love and this is not what I want. I said it before I need soft and gentle not loud and rough. Where I have come from 3 years ago is a million miles away but my heart is still tender its healing but it needs a place like the ranch once was. I love these people so very much I don't have the words, but whatever happens no one can ever take away all that I was given here by these amazing people that I am so grateful for I am not sure what is going to happen but maybe just maybe its time that I go ....
NO matter what happens I want you all to know that I truly heart your heart and you will always be a part of me. Thank you for being my place to belong. I will always LOVE you with all that I am.
