Broken

Something happened to me on Saturday night. Something that I have not been able to get past, or to stop thinking about. As you may or may not know, we are a family of Christians. I was baptized before Sophia was born, and then after her birth, Jacob, Sophia, and I were all baptized again, on the same day, at the same time. It was a beautiful ceremony and it brought us great peace. We love church. We like attending and seeing new people and old friends, we like the music, the sermon, the feeling of being in God's House. That feeling while you are there of complete and total love. We don't get to church as often as we would like. There are many reasons: Sophia is sick, we are tired from caring for her all night, it takes a small army to pack all of her stuff up, and then the worry of how she will deal with the noise, the music, the smells. But we had this beautiful week of vacation, and Jacob was off work Sunday so we decided Saturday night that we would attend church the next morning. I picked out Sophia's dress and hairbow. I chose my own outfit and laid it out. I asked Jacob what time church began and he said 11am. I thought 1130am. So I go to the church's webpage to be sure. This is where it all changed. 

I won't tell you the name of the church, we have attended several both in this town and in surrounding cities. The name of the church is so unimportant. The church webpage had a twitter feed, you know where a twitter account has their tweets posted on the page to give information. The first twitter feed was a tweet about the service on Sunday, about learning more about the Bible. The second tweet listed the two people that would be leading the service that Sunday. Now, my first thought, disappointment because I love our regular pastor. The tweet provided a link to each of those people's twitter accounts. I clicked the first one to learn more about that person. He was in college and had a few tweets about nothing of significance, at least to me. I clicked on the second persons twitter feed. Shock. Disbelief. I thought someone has incorrectly linked this person to the church webpage. I bring it to Jacob and ask him to make sure I am seeing this correctly. I am not the most savvy with technology and he is. He said that I am seeing the right person and we knew for sure, because other church members and leaders were listed as "following" this persons twitter account. As I read through the tweets, I felt sick, angry, disgusted. "I like my women like I like my coffee...from a third world country and reasonably priced", "As a cannibal, I try to eat as many gays and retards as possible, helps me get my five fruits and vegetables a day", "Last week my girlfriend was in a car accident and now has to spend the rest of her life in a wheelchair...or should I say ex girlfriend", "Some freak decided to write retard on my car window...took me an hour to lick it off", "I'm going to write a horror book in braille, and there will be a razor blade at the end", "rape is such a strong word, I prefer snuggle struggle." 

And there are more and more like this. I am disgusted and my heart is hurt. This is a person on the worship team at the church? Really? I actually messaged this person and he and I had a discussion today. He felt that it was just a sense of humor, apparently that I don't have one, and that I shouldnt have read the twitter feed. I explained that when it is linked to the church webpage, it stands to reason that it will be read. I did not go looking for it, it was on the webpage! He said that he is not perfect and that I should stop pretending to be perfect. I explained that I am far from perfect but making fun of people is not right and it is hurtful. I told him about my daughter, about sweet Sophia. At that point, he knew who I was and who Sophia was, because the church has prayed for her many times before, Sophia has been on stage there before, Sophia has been preached about by the pastor. He said he was sorry if his statements were hurtful and he would be more conscious in the future. I asked him to remember Sophia's name and in the future, when he felt that making fun of others was funny, that he think of Sophia and know that she is the one he is making fun of. Someone who already has such a hard life, someone who cannot stand up for herself. He said that he is 17 and trying to become a better person. I told him that even at 17, he knows the difference between right and wrong. We ended the conversation by him stating that he had apologized and that was all he could do, and that he would be praying for Sophia. I told him that I will not be back to the church, and that I too will be praying for him.

I realized that God has once again used Sophia to touch another. I hope that this young man will heed to his word and that he has learned something. Maybe that was God's intent, maybe He had a plan for me to read the tweets and confront this young man. But now, I am left with this hollow place in my stomach. I am sickened by this young man who should know better and I am saddened that he has taken away my church family. I don't feel that I can return there now. When the church leaders follow this man's twitter account, and do not address it with him, and do not teach him better, and he is on the worship leadership team, I feel that it is condoning the behavior, the statements, the thoughts and ideas. I can't be around that, and whats more, I won't allow Sophia around that. Thank God that she is unaware of such cruelty and hate. That she knows nothing of racist, prejudiced, homophobic people. And I am praying that this young man turn his life around, and I am praying for a new church family, and for peace in my heart, mind, and soul. Because at this very moment, my heart is hurt. 

What I Don't Need

I finally figured it out. I know what I need. What I have needed for a long time and will need for the future: A Guide to My Life. Ah, yes. That would be perfect. I know what you are thinking...."there is no such thing! There are no guides to life, you just live it as you can." You are wrong. There must be a guide; a guide that I do not have access to, but that so many other people have in their possession. I know this to be true becuase there are so many people that want to tell me what I should be doing, how I should be reacting to all of this, where I should be going, believing, working. Here are a few things that people have the guide for:
1)  I have people that tell me that Sophia should be sitting differently, that she shouldn't be in her Nap Nanny anymore because A)  she's outgrown it, B) it was recalled so it can't be safe, and C) its not good for her muscle tone. And I smile sheepishly, and say, "yes I know". And I say, "We are working on it, I'm sorry." But in truth? We are not working on it. We are not throwing it away or putting it up in the closet. We do not limit her time in the Nap Nanny and we don't intend to do so in the future either. And you know why? Because my daughter loves it. She loves the Nap Nanny. It cradles her just right, it cradles her in a way that my arms, her mommy's arms, cannot. And that is saying something. She loves it, she loves it, she loves it.
2) I should accept more help for Sophia and get out of the house more. Sure, that sounds great. I'd love to. Let me just crush all of her medications, labeling each one, and pack them in a bag. Let me get a few syringes together, put Miralax and a measuring cup in a bag, and throw in a box of formula. Let me add in cold packs because everything can spoil and choose two extension tubes for her button. I'll pack two extra outfits because she is just as likely to throw up or have a poop explosion as not. I'll throw a couple blankets in a bag too, because she changes temperature rapidly and because she has a hard time regulating temperature, her extremities stay cold. So for good measure, I'll pack her heating pad too. Two regular diapers and three overnight diapers should work just fine. Overnight diapers in case she starts to have a blow out, you'll want to put that kind on her because once she's had one blowout, you can expect two more in succession. Chapstick is needed because her lips stay super dry, a few pink sponges to wet her mouth, and an unopened container of diaper wipes. Her nap nanny must go to, for reasons mentioned above. Oh, and I'll bring Sophia too, since thats kinda the point. Now, I'll bring her to you, and watch your face as I begin to describe the process of delivering medications and feedings. I'll explain how the feeding extension tube works, how to lock and unlock her button. I'll go through a list of do's and don'ts, likes and dislikes. I'll answer your questions, of which there will be plenty. I'll show you how to mix the miralax and formula, water and meds. I'll describe her movements versus her seizures, show you were her seizure medications are located, and basically raise your anxiety level to high alert. I'll explain that should she code, you know, her heart stop beating... she does not have a DNR so tell the EMTs that she is full code; this will be their first question after you tell them she is a hospice patient. I'll give my girl a kiss and tell you that you will be just fine. By this time, I'll have about an hour before my scheduled time to return to pick her up. So, I'll run to the grocery, speed down the aisles, and rush back to your house to pick up all this crap and load it into my car. Oh, and I'll pick up Sophia too.
3) I should be working. I just can't have a life without work. I'll be too isolated from the world, I'll lose my intelligence, I won't stay up to date on life events and current topics. I'll be too sad by staying with Sophia each day, watching her deteriorate, seeing her decline. I'll go crazy. Okay, but let's say that I do work, I keep my job/go get a job. But you know what? YOU FIRST. I can hear you now, "excuse me, but I have a job!" Oh, okay. But I want you to have a job like I would have a job. So, tonight, stay up til midnight and set your alarm for 3am. Get up and give your daughter medication, change her diaper and hang out with her for an hour. Go back to bed and set your alarm for 6am. Get up, give your daughter medications, change her diaper, and hang out with her for about an hour. Go back to bed and set your alarm for 9am. Get up, give your daughter medications, change her diaper, and hang out with her for----- oh wait, you are now at work. Hmmm, okay. Well, switch shifts. Work 2nd shift....nope, your husband works that shift. Maybe just hire someone to take care of your daughter? No money, oh, okay. Thats quite a problem then, huh. No sleep, no money, no nursing care. But lets say for giggles that you did have nursing care. So now you can work (you still aren't sleeping but this is a minor issue). Your daughter has to go to the hospital so frequently, and gets sick so your spouse needs the extra support so frequently (pesky debilitating, terminal illness), that you no longer have any time at work: no vacation, sick, holiday. So every time you miss work, you don't get paid. Your bills still come and believe me, the medical bills are mounting so high you can swim in them. You want to actually spend time with your child? Like quality, "my daughter feels good today" time? No! You can't. Because you don't have any work time saved up, because you used it when she was in the hospital fighting for her life. So, when life as we know it ends, we won't be able to say, "I sure enjoyed that vacation we took to get away from it all", or "I'm so glad that we had those memories". But don't despair, you will be able to say "I still have this job and I am so glad that I was able to pay for my daughter's Life Flight to the hospital".
4) I should work on more therapy with my daughter. When she is awake, and in a good mood, I should fix that by applying pressure to her legs, arms, back, neck, feet, ankles. I need to use her awake times, not for cuddling, snuggling, and mother/daughter time....I should use it for therapy. So what if it means that we will never have "normal" memories of our time together. So what if I have to wipe tears from her eyes, drool from her mouth, and watch her face grimace from the stretching, pushing, pulling, straightening? Tell you what....each morning when your child wakes, put them in a position that is uncomfortable for them. Until they go to sleep. Then they can take a break. You can console yourself by repeating the mantra that "it is good for them". Good luck with that.

These are just four of many instructions in this little guide book that I wish I could get my hands on. If you see one lying around, please, send it my way! Until then, I'll just keep messing things up and doing things wrong. I'll keep thinking about putting my daughter first. I'll keep thinking about her happiness and comfort in this horribly painful life into which she was born, and doing my best to give her a good day. I'll keep thoughts about "terminal" and "fatal" and "end of life" out of my head and just think that I have a one year old girl that means more to me than anything or anybody in this entire world, that I have to make memories with her because I won't have her forever, because I will outlive her. I truly hope that no one has to experience this life that I am living because those that cast judgment, that think I should be doing something that I am not, that think I should be at work rather than spending an afternoon with my child, will certainly change their perspective should our roles ever come reversed. So, on second thought....if you see that guide book lying around....keep it as far away from me as possible.

Special Needs Mother

It's not easy being a mom of a special needs child. Sometimes, I forget that this is exactly what I am. I remember when this journey was still in the early stages, I wondered if I could at that time, declare myself a mom of a special needs kid. I guess in some ways, its good to be able to use that phrase, "My daughter is special needs". I have found use in that phrase especially in restaurants. We lug Sophia into this big stroller and wheel her into restaurants. I don't know if you have noticed, but you will not see many, if any, strollers in restaurants. When you have a baby, you typically carry the baby in the infant car seat and put the car seat in a sling. And when you have a toddler, you carry the child in your arms and into a booster seat they go. And when you have a special needs child, you explain to the hostess that your child must remain in the stroller so an extra seat at the table is needed. And when you get the puzzled look, you tell them that she is "special needs". It doesn't help much when we get the stares from other patrons though. They kinda give you this incredulous look: really, lady, you had to bring the stroller in?. There's only three ways around these looks: 1) stare them down and tell them to mind their manners, 2) Announce the words "special needs" to each staring mother, or 3) concentrate on getting to your table and try not to run over anybody along the way. I have chosen #3 but boy would I like to choose #1 sometimes. :)

So, at some point in this journey, I must have recognized that my daughter is special needs and that I am a mother of a special needs daughter. I don't know when that happened. It wasn't always that way. When the seizures first started, I was just the mom of a daughter with seizures. But we all adapt and change and it is what it is.  That label doesn't bother me. What does that phrase even mean? Yes, Sophia is special needs so she has to work harder to do things that come naturally to other kids. Yes, she will never be as fast as your kid, get an A+ report card, try out for the cheerleading team (although I know if she could try out, she would totally rock it!). I'm okay with that. These things, these hopes and dreams we have for our children, do not mean much to me anymore.

 

Sophia has taught me that the important things are far simpler. Spending time with the people you love, seeing the start of a small tooth coming in, painting the most perfect toenails, getting a full night's sleep, playing in the floor with my daughter....these are important things. These things matter. Because when this journey ends, when my heart has been shattered, when my meaning for being is no more, I will look back on these precious, simple memories. I want to remember how soft her skin is and how her skin glows and has no flaws. I want to remember the way her breath smells, how her hair glides through my fingers, how her hand feels squeezing mine. I want to hear the sighs she makes, the squeals, the sounds. I want to feel her weight in my arms, her bottom resting on my forearm, her head on my shoulder with her face turned toward mine. I want to see those beautiful eyes looking at her pom pom, watching it dance and sway. I want to remember the point of her ear, that she inherited from my mother. I want to consume her, drink her in, melt her skin into mine. I want her to live. I want her to survive. I want her to beat this. I want her to be healthy. I want her to.....outlive me. I want her to know that she is my everything. I want her to know that when she is gone, she will take me with her. I may be the one left here on Earth, but the person that I am right now, sitting at this computer, will surely no longer be for I will no longer have my heart. And no one can live without a heart. Or at least, that is what I am hoping and counting on.

A Special Chair

Never did I think I would ever even meet someone with a rare disease. And now, my very own baby girl has a rare disease. It's a world of its own, with it's own people, ideas, beliefs, and lifestyle. And along with this new lifestyle, comes equipment. My home, once neat and clutter free, now has "stuff" in every corner of every room. My bedroom houses a video monitoring system while my step-sons' bedroom houses a portable oxygen tank and a trampoline for therapy. Sophia's room has an oxygen machine, a pulse oximeter, a feeding pump, stethescopes, syringes. The kitchen has a gram scale for measuring formula, a Rubbermaid tube of medication, a large heavyweight pill crusher, extra feeding tubes. Our living room holds suction machines, a Special Tomato Feeder Seat, a Tumzee for therapy......and, a wheelchair. Yes, a wheelchair. This is our newest piece of equipment. It's not your grandpa's wheelchair but rather a cuter version. It is mostly blue with a few patterns of color here and there. It is on loan until we get our own wheelchair. I still remember when a wheelchair was first mentioned to me. A wheelchair? For a baby? I had never even thought of such a thing. A wheelchair for a little bitty girl, my Sophia? I don't think I've seen a little girl in a wheelchair before. I couldn't imagine there would be such a small thing. And there may have been a time when I cringed at the idea of Sophia having a wheelchair. The idea that others would immediately know something is not "right" with Sophia. Of people staring at her even more, and thinking how sad. But now, I don't see any of that. I don't think of it as being sad or pitiful. Now, I see a sweet girl that has a hard time sitting up on her own and she needs a seat that will help her. I see a girl that I want to take everywhere with me but I want her to be comfortable too. I see a girl that I want other people to see, to take notice of, to smile at, and get to know. I see a girl that can change the world, and in many ways, already has. So if you see my sweet Sophia sitting in her wheelchair, sitting up like a big girl, looking like a toddler, please smile and say hello to her. Know that she is special in more ways than are visible to the eye. It's okay to touch her hand, ruffle her hair, squeeze her foot. She is just Sophia...I mean sure, she is a princess and everything, but even a princess needs friends. :)

My Little Sack of Potatoes

Twenty three pounds. That is how much Sophia weighs. Twenty three pounds. Sounds like nothing. You probably think, my child weighs more than that. But twenty three pounds of weight with no support from the child, is very, very heavy. I once commented that Sophia is like a sack of potatoes. She has no support so its just "dead weight" for lack of a more appropriate term. If your child weighs twenty three pounds, you pick up your child, and they help by lifting their head, their arms around your neck, their legs around your waist. They have trunk control and even though you are carrying them, they are supportive of their own body weight. Sophia does not have that. Go to the gym. Pick up a twenty three pound weight (if they make such a thing), and carry it around. Make sure the weight is an awkward shape too. Oh, and thirty inches long. It has to wiggle and shake, and you have to fully support the "head" of the weight. The head will smack against your shoulder blades or chin if you aren't very careful. The weight should also have "limbs" coming from it as well; these limbs should hit you in the face and shoulders as you pick it up. Now, carry it around. Lift this weight in and out of a carseat, a stroller. Bend down and put this weight in a bathtub and then pick it back up when you are done. Carry the weight to a crib, lean it over the side, very careful not to "wake" the weight, and tuck it in the bed. Lift the weight from the crib and carry it to the living room and find a seat that is suitable for such a weight. A seat that will hold the weight without allowing the weight to wiggle to the ground, because remember, the weight does not stop moving. And when you have completed all of your activites for the day with your weight, tell me if twenty three pounds is heavy. Now, don't get concerned, I am not comparing my daughter to a weight. My daughter is much, much more. My daughter is a baby, an angel, a sweet beautiful being that means the world to me. But I am comparing her weight to a weight. I am trying to make it understandable and comprehendable because when I say she is heavy and weighs twenty three pounds, it is impossible for others to fully understand what that means. So this comparison is made. And my hand hurts. I have a pain in my right hand that will not go away. I have had it for months. I went to my family doctor two months ago and an X-ray was taken; nothing is broken, nothing can be done I was told. Stop using it so much, I was told. I looked at the doctor with this look of incredulity, because I had just explained the situation with my daughter. Oh, stop using it? Is that how I can make the pain go away? Well, why didn't I think of that. I mean, its just my right hand. Its just the hand I use to weigh 94 grams of formula and 21 ounces of water each day. The hand I use to grind fifteen pills into powder three times a day so that they will not clog my daughter's G-Tube line. I only use my hand to lift her a thousand times a day, change her diaper two thousand times a day, and change her clothes four times a day. Not to mention it is the hand I use to stroke her hair, massage her aching legs, wipe away her tears, and hold her tiny hand. But there are days when I think, I can't lift her anymore. My hand literally gives under her weight. I go to put her in the car seat and I stop, because I may drop her if I try to lift her. Sophia and I sit in the back seat of the car and I ask her to give me a minute until I can regain my momentum and lift her twenty three pounds up and over into that car seat and get her strapped in for safety. Times when I cannot get the stroller out of the back of the car and on those days, my husband has to do all the work, getting Sophia in and out of the car seat, in and out of the stroller. I stand there and watch and wonder, how much longer can I do this? Will there come a time when I can no longer lift my daughter? She is growing, and for this, I am happy. I want her to be a "healthy" weight even if her body and mind are not healthy. I have talked to other special moms that have special kids that weigh more than Sophia. One mom told me that her son weighs fifty three pounds and she lifts him and carries him from place to place. Another person may think, oh my! How does she do it? How does she lift such weight? But I know better. I know that she lifts his weight because she can. Because she does. Because she has to and there is no other choice, no other option. So I too will continue to lift Sophia. I will continue to bathe her, feed her, change her. I will do all the things she needs me to do. I am her mother. I will not fail her. I will not waver. I will not fall. I look into that beautiful face, the one with the perfect lips, round cheeks, and shining eyes, and I ask her to give mommy just a moment and then I will lift her to where she needs to be. Sophia just keeps babbling, keeps moving, keeps making those wonderful sighs: she has no idea that her mommy is not perfect. And I have no doubt in all the world that she, my sweet Sophia, most certainly is perfect. Up into the car seat, and away we go. Ready to conquer the world.

Meet the Parents :)

Someone recently asked if there was a post on the blog about Jacob and me. What a novel idea! :) It seems like somewhere along the way we lost our individual selves and simply became Sophia's Mommy and Daddy. Not that there is anything wrong with that, just the opposite in fact. There is nothing in the world that we'd rather be! But, to honor the request..... some information about us, the parents.
Jaime--I grew up in Western Kentucky with a loving family, two older sisters. Had a great childhood. My first job was working at a grocery store as a cashier, which I hated! I attended college at Murray State University and graduated with a Bachelors Degree in Psychology, minor in Criminal Justice. During my college years, I worked at a treatment hospital for children with mental illness and behavioral problems. That was a very hard job; there wasn't a day that went by that I didn't have to break up a fight between kids. After college, I worked as a Support Coordinator for a behavioral health agency for adults with mental illness. It was a job I should have loved with my background in Psychology but I did not love it at all. I eventually took a job with the Department of Corrections as a Classification Officer and worked in a prison for about a year. I moved to Lexington, KY and took a job as a Support Coordinator again, for a different agency; this time, working with children. But I missed my job in Corrections so I took a job with the Detention Center in Fayette County, Kentucky. There, I met and fell in love with my husband, also a Corrections Officer. Fast forward about nine years, and now I am a Sergeant supervising two areas: Classification and Inmate Services. I have a great group of people that I work with and I am very blessed with my job.
Jacob--Jacob's father was in the military and this afforded Jacob the opportunity to live in Germany for some time as a child. He grew up in Western Kentucky before moving to Lexington, Kentucky. Jacob has a loving family, his parents are still happily married and he has two younger sisters. Jacob was blessed with two children of his own at a relatively early age, Jordan and Dyllan, now 13 and 8 years old. Jacob took some classes at Eastern Kentucky University but it proved difficult to continue on to a degree due to his need to work and support his children. Jacob worked at a bank prior to taking the job with the Detention Center in Fayette County, Kentucky. Jacob's father is a police officer and his mother works at the Detention Center also so it's kind of "in the blood". Jacob is also a Sergeant at the Detention Center and supervises the Intake area, where inmates are first introduced to the facility by police officers.
We were engaged for exactly one year and got married in 2006. Jacob has joint custody with his two boys and they stay with us on most weekends. I had always wanted a child and in 2011, Sophia Grace Crawford was born. My pregnancy and her delivery was completely normal and healthy, no complications. Sophia's first two months of life were filled with love, awe, and the feeling of being complete. In January 2012, Sophia began having jerky movements that were soon diagnosed as seizures. We spent eight months, in and out of the hospital with Sophia having tests and procedures completed to find a way to help our baby girl. We were told that her disease was probably so rare, that we would never find a diagnosis. But we continued in our quest and kept the hope that one day, a doctor would be able to heal our darling baby. On August 8, 2012, following a routine MRI, we received a call from Sophia's neurologist on our way home, and were given the devastating news: Sophia had a terminal illness that has no cure and is always fatal. Since then, we have grieved deeply, gotten angry, cried, cursed....but never gave up. Sophia is the most precious gift and we are extremely blessed to have her. Our goal now, is to help Sophia to have a fulfilling life, a meaningful life, to keep her happy and comfortable. With that goal in mind, we want to help raise awareness to BATTEN DISEASE, to find a cure, to help these beautiful children that suffer needlessly each and every day of their short lives. WE WILL NOT STOP AND WE WILL NOT QUIT.

My Own Journey

I'm on my own Journey. I'm sure that I always have been, but either didn't take the time to realize it, or didn't even believe it. I've known my daughter, Sophia, was on a Journey for about a year now. And I consider the steps she takes on her Journey and I talk about her Journey and I publicize her Journey. But my own Journey? Never considered it. But here I am, most certainly. I've never been an outgoing person. I've always had lots of friends but more because they approached me, rather than me approaching them. My outlook on people and human nature, quite honestly, has always been more on the negative side. I feel very "in tune" with human nature; I'm sure my degree in Psychology just adds to that! I feel like I know immediately if a person is good or bad. I work in an environment full of criminals, constantly scheming and manipulating and lying. And just when I think someone has turned themselves around, bam! They'll lie to you again, and you'll fall for it again. So if someone had asked me a year ago, if people were inherently good or bad, I wouldn't hesitate with my answer: people are inherently bad. People do bad things and they are mean and they are nasty and they are evil.
And as I sit here and write this, I realize how silly I am to have believed that my Journey just started; my Journey began long ago and maybe its just taken me this long to realize it. Like I worked up to this point. And I once again consider how much my daughter has taught me. She has taught me patience, understanding, and love for others. Yes, love for others. Tonight, on Sophia's Journey Facebook Page, I mentioned two items that I thought would be good for Sophia. Within minutes, a stranger had ordered and paid for the items, and had them ready to ship to my Sophia. That is amazing. It is undeniably one of the most amazing things. And to that wonderful woman and her husband, it may just be a way to help out this little girl. But to me and my Sophia, its the chance to help Sophia learn to hold up her head and an opportunity for Sophia to have a little fun on a trampoline (another bucket list item). Sophia has taught me to accept others, to love others, to think highly of others. Now, go ahead. Ask me if people are inherently good or bad; I won't hesitate with my answer: people are good, very good, inherently good.
Thank you God for my daughter, thank you for this Journey.