The Saga Of The Wheelchair Ramp

Back in June my sister-in-law called me and told me her son wanted to put in a wheelchair ramp on the front of our house for his Eagle Scout project. She said that the companies that her husband owned would sponsor it. I, of course, cried with gratitude as we had no idea how we were going to get a ramp for our house and with Georgia going to school now it is hard to get her out to the bus in the morning. Well, June went by. And so did July. I called my sister-in-law to make sure everything was okay because I had heard you can't do your eagle project for a family member. She assured me everything was fine and her son already had his approval. August came. School started. I called my sister in law again to see if her son was going to do the ramp. She assured me that he still was. September came. By this point I called my brother, who is a contractor and explained the situation. He generously offered to help build the ramp if my nephew wasn't able to do it for his project. We tentatively scheduled to rip out our stairs the weekend after Labor Day. The day before the scheduled demolition Darryl again called his sister. She said her son was definitely going to do it and that he had a plan and everything. We explained that we had neither seen nor heard anything and at the very least he needed to let us know his plan since it was our house that was going to be altered. So we cancelled the demo with my brother. About a week later my nephew finally came out to our house with the contractor that my sister in law had hired. They took a few pictures and we discussed what we thought would work for our house. The contractor said he would send the pictures to an architect who would come up with some sketches. After that I heard nothing. Finally at the end of September I texted my nephew to see if we could get a date as to when he was going to start the ramp. He explained that it was golf season (he's on his high school golf team) and the state championship was on October 4th and he couldn't do it until after that and he apologized for not being able to do it sooner. I said that was fine and I understood how busy high school was but I needed him to do it no later than October 13 because the weather was getting colder and soon we wouldn't be able to pour cement. He said that was fine. I further explained that if he couldn't do it to please let me know because I had another nephew who could do it for his project and wanted to do it. Then at the family barbeque a few days later my sister in law explained that the 13th was fall break and her family would be going on vacation to Lake Powell. I said "well what about the weekend of the 6th, he'll be done with golf and its before your vacation?" She said she would talk to the contractor to see if he was available. I then didn't hear anything. I assumed that he would do it the weekend of the 20th since there were no more excuses. So on the 16th I texted my nephew again and asked him if we were good to go on the ramp for the 20th. I never got a response. Finally on the 18th Darryl called his sister and asked her what was going on. She said "oh didn't I tell you (my son) got asked to the Sadie Hawkins dance." Darryl explained that we really needed this ramp and it was getting colder and soon we'd be out of time to do it. She said that her son and husband and the contractor were going to meet that night and formulate a plan and he would see if the girl that invited him to the dance was planning a day date and maybe they'd be able to do it Saturday. She asked my husband for his email address so that her son could send him the plan as well as the architect's rendering for us to look at. Darryl told her okay but we need to hear what the plan is. She assured us her son would send us an email that night. We again heard nothing. After again not getting any information I called my brother and said that we needed to just do the ramp. Saturday the 20th was the last warm beautiful day and would have been perfect for getting the ramp done, unfortunately my brother already had other plans but he said he would come on Tuesday October 23rd and we could rip out the stairs. My husband and I worried and fretted about how to handle the situation with my sister in law. I finally told Darryl to call his sister and tell her if her son really wanted to do the ramp for his project he needed to come before Tuesday because I wasn't willing to call off my brother again just to have my nephew fail to show up yet again. On Sunday Darryl called his sister. She vacilated between crying and being mad. My sister in law tried to explain that the whole thing was tied up with the scout committee. I highly doubt its been tied up with the committee for 5 months. And remember how earlier I said I'd talk to her and she had said it had been approved. Well she then tried to say that they had approved it but then they sent it back and he needed to change it. Well Darryl kept asking her "what do you want me to do? We need the ramp and you can't give me even a time frame of when (your son) can do it and its supposed to start snowing this week." Well, Darryl left the phone call and asked her to think about it and they would talk on Monday. When Darryl talked to me about his phone call with his sister I understood her point of view and I knew she was mad because she thought I was demanding the ramp RIGHT NOW and she probably thought we were a bunch of ingrates but the reality is I actually wanted and needed the ramp back in August when school started. I waited and gave her son more time to allow him to do it. Its unbelievably difficult to get a 45 pound wheelchair with a 35 pound child in it down the stairs every single day! I can't even imagine having to do it in snow. So I offered to call his sister and explain that its not that we are ungrateful, it just needs to be done. Its hard on me, its hard on Georgia and we are out of time. So I spoke with my sister in law and I could tell that she was furious. I kept telling her that its not that we are ungrateful, its just that we need it. She said things like "well I know it hasn't looked like (my son) has done anything but he has put a lot of work into it" and "now I'm out $500 for the plans from the architect" (first of all there was no need for an architect to even be involved, I literally looked at our house and said "we need to just tear out the center section of the porch and have the ramp go out further into the yard." My brother looked at it and eyeballed it and we came up with our own plan). She also said "he's 16 and I can't just tell him to do it." Umm your his parent that's exactly what you are supposed to do. I don't know, I guess I was just raised differently. In my family you can't get your driver's license until your eagle project is done. Apparently in her family not only do you get your drivers license, you get a car, get to play golf, go on family vacations and go to school dances. So while we were talking I could tell how mad she was. I kept saying "I can tell you're mad and I'm sorry. I don't want you to be mad. We just need the ramp. Its too hard on me and on Georgia and its going to snow soon." She said "well that's my choice and I can tell you've been mad for a while now and that's your choice so I guess you'll just have to do what you have to do." I again apologized and said that we were just going to have to do the ramp ourselves because we are out of time. If she had been able to give us a time frame that would have been one thing but she couldn't even do that so for all I know the ramp would be done next spring some time. So Darryl and I proceeded to make plans to do the ramp ourselves. My brother offered to come on Tuesday and I enlisted some men from the neighborhood to come help. Then a small miracle occurred. A contractor who is building some new homes in our neighborhood heard through the grapevine that we needed some help with the ramp. He offered to come tear out the contrete and haul it away free of charge. We also realised another small miracle. When we bought our house I was annoyed that our house was the only one without a cold storage area. Every other house that was like ours had cold storage under the porch. I now realize, after talking to my brother and a couple of contractors, if our house had cold storage we would not be able to tear out the section of porch we need to and we wouldn't be able to put in a ramp. Heavenly Father knew we someday would need a ramp and so our house is the only one without cold storage. I have been absolutely overwhelmed by the number of people who have stepped in and helped us build this ramp. Its unfortunate that my sister in law didn't understand our situation and my nephew was not able to get his project done but I am amazed at the kind and wonderful friends and strangers who have stepped up to make this happen for us.

Shouty McShout

I remember the days when I longed for Georgia to talk. She either screamed and cried or just laid there and said nothing. Occasionally we'd get a little coo but that was about it. Then somehow she learned to shout. Now that's all I hear. If I leave a room, she shouts at me. If I'm doing something that bugs her, she shouts at me. If her sister is annoying her, she's shouting. Her favorite time to shout is at 4:00 a.m. Its not so cute when its still dark outside. I'm grateful that she is more vocal. I just wish she wouldn't use her new skill while I'm trying to sleep.

Left out

Well today it happened. A day I knew would someday come, I just didn't think it's be this soon. Today Eden got invited to a birthday party and Georgia didn't. I know it shouldn't bother me and I know the mom didn't do it on purpose. In fact I doubt it even crossed her mind. Its a little girl that lives in our neighborhood, she also is in Eden's dance class. Now I'm stuck feeling sad that Georgia is left out but also wondering how I should handle the situation. Do I take Georgia with me to take Eden to the party? Or do I leave her home with someone? I don't want to make the mom feel bad or bring an extra child she didn't expect. But they are twins. It just hurts my heart to know Georgia didn't get invited too. I know Georgia doesn't care but I do.

New Meds

Georgia has struggled with seizures since birth. She has been on Keppra since she was 3 weeks old and Trileptal since sh was about 1 year old. Even with these medications she was still having break through seizures. For a while she would only have a seizure every 3 days or so but now she is having maybe 10 seizures every day. Her most common seizure looks like a startle. She also has tonic/clonic seizures which put her in the hospital emergency room about every 3 months. Sometimes these tonic/clonic seizures can last up to 3 hours. They are generally set off by her getting too hot or too mad. Georgia usually doesn't seem to mind her seizures so I've never really worried about it. In May of this year Georgia had abductor release surgery and was given Valium to help with muscle spasms. I noticed while she was on Valium she didn't have any seizures. I talked to her special care doctor who talked to her neurologist about putting her on a small dose of Valium daily. Their concern was that Georgia takes Diastat (a form of Valium or diazepam) for her tonic/clonic seizures when they last longer than 3 minutes, its her rescue drug. Their concern was that if she was on Valium daily that she would develop a tolerance for it and we wouldn't be able to use it as a rescue drug. Instead, her doctors decided to prescribe Onfi (clobazam) which is also a benzodiazpien but is specifically for seizures. I thought great lets try it. I went to pick it up from the pharmacy and it was $200 for a 30 day supply and my insurance would only cover half. NOT GREAT! With all of Georgia's medical bills we simply can't afford an extra $100 a month for prescriptions. So I called the doctor back to see what we could do. She said some patients get the Onfi from Canada where it is much cheaper (of course she wasn't recommending that I do this, she was just sayin'.) So I called a pharmacy in Canada and yes they did have Onfi and it was only $45 for a 90 day supply but they were no longer able to ship it to the United States because the FDA wouldn't allow them anymore because the drug is now available in the U.S. Insane, I know. But the pharmacy said if I had a way to pick it up they could do it. I then set out to find myself a drug mule to go to Canada, get the drug and bring it to America. What you don't do this kind of thing on a typical Wednesday morning? Luckily I have a friend who lives near Seattle who was willing to go get it and mail it to me. I also figured I would try the drug company itself to see if I could get some sort of a discount. The drug company was willing to offer $50 off. That still meant I'd have to pay $50 a month for this med, still not doable. The drug company was kind enough to put me in contact with a non-profit organization that helps with prescription drug costs. After over a month and probably 50 phone calls between doctors, the insurance company, pharmacies, the drug company and the non profit organization I was finally able to get the medication paid for without having to use my friend as a drug mule or breaking international laws. On Wednesday we started Georgia on the new med. She has been very sleepy and drugged out and we haven't even made it to the right dose yet. Its heartbreaking as a mother to see your child suffer, but its almost as hard to watch them in a completely drugged out state. I'm hoping that after a while her body will adjust to the new medication and she will return to her normal self. Luckily it does seem to be working for her seizures.

The Day Our Lives Changed

Most parents of a child with special needs remember the day their lives changed forever. They remember the day everything went from fine and dandy, to "oh hell, what is happening?" The day they were told something was "wrong" with their child. For my husband and I it was December 31st of 2008, we went to the perinatologist and received the worst news a parent can hear - that our baby girl was not going to live. I remember it like it was yesterday, even down to what I was wearing and what I was eating. A lot of what was said is Charlie Brown adults going "wah, wah, wah, wah" because I was in shock, but all the feelings are still there. On Christmas Eve 2008 we had an ultrasound to find out the gender of the babies, at that ultrasound we were told that Baby A (Georgia) had fluid on her brain, but we were also told that it wasn't that much and worst case scenario shortly after her birth they would have to put a shunt in to drain the fluid. As a mom this scared me because I didn't want my baby to have to have surgery but I wasn't terribly worried. I received a blessing from Darryl and was told that everything would be okay. But by New Year's Eve things were much much worse. On December 31, 2008, I drove to Darryl's work and we left together to go see the perinatologist (we left my car at his office). As we were driving our conversation was light hearted, we had no idea what we were in for. We arrived at the appointment, the technician did the ultrasound and gave us no indication that anything was wrong. As we waited for the doctor we were laughing and joking. I was sitting there eating a granola bar as the doctor walked in. She sat down to talk to us. She told us that our baby had holoprosencephaly, at the time I didn't even register the diagnosis but what I did register was her saying "and its always fatal." I felt like the rug was pulled out from underneath me. I immediately went numb. How could this happen, how did a week ago we were told its not that big a deal, worst case scenario she'll have a shunt put in go so quickly and easily to "its terminal"? The doctor did her best to explain to us that our baby girl did not have a brain, either it just didn't form or a blood vessel burst and it was destroyed. She told us that she would likely be born alive but she may only live minutes, hours, days or possibly months but most of these babies don't live longer than 6 months and in some very rare cases they survive years but are severely mentally retarded. As you can imagine Darryl and I were heartbroken. The doctor then left us alone for a while to digest what we had just been told. All I could do was cry. I just sat there in disbelief. The baby we had waited so long for and already loved so much was not going to make it. My phone rang, it was my friend Kelly, I didn't answer, I didn't want to talk to anyone. The doctor came back in, she said "let me do another ultrasound, I want to check something." Some renewed hope maybe? Sadly no. She said it may not be holoprosencephaly it may be hydranencephaly but that too was also "not compatible with life" meaning fatal. Once again my heart broke. She said it didn't look like the baby had a cleft lip (a common sign of holoprosencephaly) but they wouldn't know if she had a cleft palate until after the baby was born and they could stick their fingers in her mouth to check. I asked if she could write the diagnosis down for me because all of this wasn't really registering. She said sure and that she would give me some information on both disorders and she said she would have us talk to Becky, the genetic counselor. Dr. Gainer said that she was so sorry and said that we could call her if we had any further questions once it all settled in a bit. We then met with Becky who was then throwing more medical terms at us like "trisomy 13" and asking us about our frozen embryos and would we like her to notify our fertility doctor. I couldn't even think about future children when I was sitting there trying to deal with losing one of the ones I was carrying. I asked Becky "could they be wrong?" And all she said was "even if they are wrong, there is something seriously wrong with your baby." We were given no hope, no other possible outcome. It was a fact our baby was going to die and there was nothing I could do about it. That was the hardest part. If she had already died that would be one thing but knowing that I would carry her 4 more months and then not know how long I would have her was the hardest part. Darryl and I drove home in utter shock. How had this day gone so horribly wrong? We stopped at his brother's house to drop off my car keys as I was too emotional to go pick up my car and drive home. I sat in the car while Darryl told his brother briefly what had happened. I remember my sister-in-law coming out on the front porch, I didn't know what to do. Do I wave? Do I say something? I just sat there. Eyes red from crying. We drove home. I was in an absolute daze. My neighbor texted me that they were available for New Year's Eve if we still wanted to do something. All I could do was say we couldn't do it, there was something wrong with the baby. I just laid on Darryl's lap and cried. We both didn't say anything, we just grieved for our baby girl. Finally we decided to put on a movie. Darryl brought up a whole stack and asked what I wanted to watch. I said I didn't care. He put in Sleeping Beauty. While the opening credits were rolling I said to take it out, I didn't want to watch it. I was thinking how my little girl would never watch Sleeping Beauty, she would never pretend to be Briar Rose and dance with the prince. I couldn't watch that movie knowing my little girl never would. He put in Mulan instead. I watched Mulan and was in a daze. That movie has forever been ruined for me because I will always associate it with that horrible night. Finally close to midnight my friend Kodi texted me and told me to look out the window that her husband Victor would be shooting off fireworks from the golf course. Darryl and I went in the bathroom and stood in the bathtub and watched the fireworks not saying a word. Somehow we finally went to sleep. The next day I just laid in bed in my pajamas. In a daze. Going through fits of crying like I've never cried before and moments of just staring off into space. Darryl kept trying to get me to eat something. I wasn't hungry. I figured I needed to let my family know what was going on. I called my brother George. I couldn't call my mom, she's too much of a drama queen, I couldn't deal with that right now. I called my brother and told him the news and asked him to call the rest of the family. I didn't feel like talking to all of them and going over the story over and over again. I didn't want to talk to anyone. My best friend Merrilyn called and wanted to exchange Christmas presents. I couldn't talk to her. Darryl answered the phone and explained the situation. A little later my sister called, apparently she had not yet gotten the message from George so once again wonderful Darryl stepped in and took the call. He told her what had happened. Then later still my mom called, she had heard the news from my sister, and despite the fact that I made it clear I didn't want to talk to anyone, she called anyway. Darryl took that call too. I don't know what I would have done without him. He took all the family calls and told the story over and over again. He took the call from the Relief Society President who had heard from my neighbor that something was wrong with the baby. He ran interference while I was basically catatonic and couldn't deal with life. In the afternoon Darryl's parents came over and brought us lunch. My eyes were red from crying. I couldn't eat anything. It was a very quiet lunch. His mom said "at least you won't go home empty handed, at least you'll have another baby to hold." I hated her for that. I didn't have two babies so that if something happened to one that I'd have a spare. I knew she meant well but at the time it just made me angry. How could she say something like that? She had lost a child. Did it make her any less sad when Connie died knowing that she had 5 other children? As more people began to know the fate of my child a lot of people would say things with the best intentions but at the time they just sounded stupid. I learned in these situations the only thing that is appropriate to say is "that sucks, I'm sorry." There are no words to make it any better. I decided that the best thing for me to do that day was to try and stay busy, so we decided to take down the Christmas decorations. Staying busy worked for a little while until I got to taking down the stockings. We had already bought the twins' Christmas stockings and as I took them down I realized next year I may only be putting up one. I burst into tears yet again. The hardest part was thinking of all the things my child would not get to experience. Her first Christmas, her first birthday, her first date with a boy, her first dance, her wedding day. I couldn't handle knowing that my baby girl would miss so much of life. That night I couldn't sleep. I got up and wrote one of the hardest emails I've ever had to write. I wrote an email telling my family and friends that my baby was going to die. I also researched her condition. It only scared me. I learned that she may be born with only one eye, she may be a cyclops, she may only have a single nostril. Research only made me more scared. The next day I called Dr. Gainer. I had some questions. Would she feel any pain? Would she be able to see or hear? Was her face normal? How would she die? Dr. Gainer returned my call that very day. She told me that these babies did not feel pain. That she would likely hear because the part of the brain that controls hearing is on the side and she has that part of the brain. It was unknown if she would see it just depended on if the optic tracts developed. Her face looked perfectly normal, she had 2 eyes, it didn't appear that she had a cleft lip or a single nostril. She looked perfect. She said these babies usually die peacefully. She said these babies are very calm, they cry when they are hungry or when they need a diaper change but otherwise they are very peaceful. I thanked her for calling me back. While I still felt awful, I somehow felt a little better knowing my little girl wouldn't suffer. The days and weeks and months went by. I felt it was best to keep busy. Darryl arranged for people to keep me busy and entertained. His sister took me shopping and to get a pedicure. I went to a movie with my sister-in-law. I went to lunch with friends. As time wore on I became more and more used to the fact that my child was going to die. I mentally planned her funeral. I planned what Eden would wear to her sister's funeral. We had a burial plot. I packed everything I would need at the hospital in case that was the only time I got to spend with her. Just in case, we set up her room and her crib. All I really wanted was to be able to bring her home even if it was for just one day. Then they were born and the miracles started to happen. First Georgia breathed on her own. We had been told she would likely have to be on a ventilator. Then she ate on her own. We were told she would likely never eat on her own. She was perfect. You would never know this child was given a death sentence. We enjoyed every minute we had with her knowing each moment may be our last but hoping she would hang on for a long time. We were told we could take her home. My wish had come true, I was going to be able to take her home even if it was for just one day. After we took her home is when I had the worst night of my life, she couldn't maintain her breathing, her heart rate was really low and she was very cold. I kept feeling like I was going to lose her. I wasn't ready to let her go yet. The next day we took her to the pediatrician and he eventually sent us to Primary Childrens where a few days later we were given the greatest miracle of our lives. We were told Georgia was not terminal, she had hydrocephalus and she needed a shunt. We are probably the only parents on earth who are grateful for a diagnosis of hydrocephalus. Looking back I am grateful for everything we went through. Had we not been through what we were forced to face I would not be so grateful for a disabled child. I was faced with losing her and so I will take her, problems and all. I love my sweet Georgia and I know she is a gift from God. She is my miracle. I believe she was given a choice. I believe she was told "you can go and get a body and return home or you can stay but it will be difficult." I begged her to stay. Many times during my pregnancy I begged her to stay with me. I begged her to fight. She is here now because I believe she knew how hard it was going to be for her and she chose to stay anyway. The last 3 1/2 years have been the hardest and best years of my life all rolled into one.

Our Little Miracle

Georgia is our miracle child. She is 3 1/2 years old and is severely disabled and has special needs. My story begins when I was 21 weeks pregnant with twins. On Christmas Eve I went in for an ultrasound and was told that Baby A (Georgia) had fluid on her brain, a condition called Hydrocephalus. I was told that worst case scenario they'd have to put a shunt in after she was born to drain the fluid. I was told to see a perinatologist and did so the next week on New Year's Eve. Our whole world was torn apart in that visit. We were told it wasn't just fluid on the brain that she didn't have a brain, a condition called Hydranecephaly. We were told she would survive until birth but would not live long thereafter. We were told she may only live minutes or days but definitely not longer than 6 months. We were given no hope and told there was no way it was a mistake. We were advised to plan for her funeral. For the next 4 months we grieved for our little girl who wasn't even born yet. We planned a funeral and bought a burial plot. All we could do was prepare for the worst but hope for the best, that she at least would come home for a little while.


At 36 weeks my doctors induced me because there was concern about Georgia's head size. Being Baby A she was born first, she was held up so I could see her and then was quickly wisked away from me to the awaiting NICU team, I didn't even get to hold her. My husband went with her because if anything happened I didn't want her to be alone. Minutes later, while I was delivering Baby B (Eden) my husband was back by my side, I told him to go be with Georgia, he told me Georgia was fine and had even gotten a 9 on her Apgar. She was already proving that she was a miracle. She was breathing on her own, something we were told not to expect. Georgia did fantastic! She even ate on her own. She was able to be in the well baby nursery with her sister. After 3 days in the hospital we were able to go home with both babies but not for long. The night we got home (Easter Sunday) she crashed, she couldn't keep her oxygen up, she stopped eating and she couldn't maintain her temperature. It was the longest night of my life. I was convinced that I was losing her. We took her to the pediatrician the next day. He took Georgia's temperature, it was 91 degrees, the doctor thought the thermometer must be broken, he checked again, same result. He told us to go home and pack a bag, a room would be waiting for us at the hospital.

We took her to our local children's hospital for what we thought was to get her stabilized and bring her home to let her die. Several days after being in the hospital we met with the palliative care team to discuss when we would bring her back to the hospital and when we would just let her go; Georgia's neurosurgeon walked in and changed our lives once again. He told us that the prenatal diagnosis of hydranencephaly was wrong. We were told she did in fact have Hydrocephalus and if they put in a shunt there was a possibility she could lead a perfectly normal life. We also learned Georgia has a condition called Sept Optic Dysplasia which means her optic nerves are small and she is visually impaired. We also discovered that Georgia has seizures. At just 13 days old and weighing less than 5 pounds, Georgia had brain surgery to have her shunt placed. The shunt pumps the cerebral spinal fluid from the brain down a catherter under the skin behind the ear and down into her abdomen where it is reabsorbed by the body. The shunt looked huge on her tiny little head.

When Georgia was almost a month old we finally got to take her home from the hospital. Once home things didn't get any easier, she came home on oxygen and a feeding tube (which she pulled out after 2 weeks and started eating orally) and she was an unbelievably fussy baby. She could scream for up to 20 hours per day. She only slept 2 hours at night and 45 minutes during the day. I was exhausted. Here I was a new mom.Of twins. One of which needed constant care. When Georgia was almost 6 months old after dozens of doctor visits with various specialists, we discovered she had horrible reflux. The reflux was also causing her to have what we later learned were Thalamic Storms, where the brain basically loses control over the autonomic systems of the body. She would start breathing heavily, her temperature would increase to as high as 104 degrees and her heart rate would sky rocket to as high as 200 bpm. She would be in this state for hours. We finally convinced a surgeon to perform a Nissen fundoplication (where part of the stomach is wrapped around the esophagus preventing any acid from coming up), Nissens are typically not performed on such young children. Ever since her Nissen she has been a different baby. For the most part Georgia is calm and peaceful now.

Our world was again turned upside down when Georgia was about 10 months old. Another MRI was performed and we were told that there was more going on than just Hydrocephalus. Her brain just didn't develop correctly. She has a small rim of cerebral cortex around the edge of her skull but most of her brain is filled with fluid. Her brain stem is small and malformed and her cerebellum is small. Her doctors have never seen brain anatomy like hers so the closest diagnosis they can get is Hydrocephalus but that didn't even begin to describe what is going on. She is severely disabled and is unable to even lift her head, let alone roll over, sit up, crawl or walk.

Its been quite the rollercoaster ride. Every aspect of our lives have changed. I used to be a very successful corporate attorney but gave up my career to stay home with the girls instead. We used to never have to worry about bills and now its a daily concern. I think the biggest effect on our lives is just the sheer exhaustion my husband and I both experience. Georgia doesn't sleep much and requires a lot of care and we still have a "normal," healthy very active 3 year old to look after as well. While its not an easy life, we see Georgia as a huge blessing to our family. The peace she brings us is like having a little piece of heaven in our home. I know everything that has happened with Georgia happened for a reason. If I hadn't been told that she was going to die, I wouldn't appreciate her condition now. When people ask me how Georgia is doing I tell them "Great. For a baby who's supposed to be dead she's doing fantastic."

A typical day for Georgia begins very early. She wakes up at about 4:00 or 5:00 a.m (which to us is great because it used to be 3:00 or 4:00 but with Melatonin we get an extra hour). We don't get her out of bed until 7:00 so usually she lays in bed and squirms around and makes noises to try and get us to come in. She eats breakfast which consists of pureed baby food with all of her medications mixed in and a bottle. Miraculously Georgia eats all her food orally, she does not have a gtube. According to her brain scans she shouldn't be able to do this but she does. She loves food, all you have to do is say "cake" and she smiles. After breakfast I get her ready for school and the bus comes and gets her. She goes to a special school that is for kids with serious special needs. At school they do stretches, which lasts about an hour and a half, and her exercises, which is basically to help her learn to use her muscles and body, but she is also taught her colors and numbers and reading.  She also has physcial therapy and occupational therapy, speech and vision therapy at school. All of this used to be done by me in our home before she went to school. She gets home from school around noon and eats lunch and takes a nap. After her nap she plays with her sister and usually has additional therapy or doctor appointments. Our lives our ridiculously busy.

Eden absolutely loves Georgia and their relationship is the cutest thing ever. Eden first thing in the morning asks where her Georgia Peanut is (Georgia's nickname is Peanut). If Georgia is asleep Eden asks to wake her up. Eden is such a good sister, she loves to play with Georgia and gives her toys to play with. She also takes really good care of her, if someone gives Eden something, like a sticker or a toy, she asks for one for Georgia. Right now Eden is very into princesses, she loves Princess Aurora and calls herself Princess 'Rora, she says that Georgia is Cindrella. Whenever Eden plays dress up she gets the Cindrella dress and shoes and tells me to put them on Georgia. She likes to help feed Georgia too. Georgia loves Eden too, most of the time. Occassionally Eden will get too rough and Georgia will get annoyed but most of the time she tolerates her sisters "love." The cutest thing is when Georgia starts to cry Eden will give her "yellow blanket" (Eden's most prized possessions) and a toy to try and calm her down. I frequently find Georgia with yellow blanket over her face. They have a very special relationship. Georgia is mostly a pretty mellow kid. She only really screams when she is in pain. She loves to be held and cuddled, although she is getting more and more wiggly. When Georgia's dad gets home from work, she just beams. If he starts playing with Eden first, she will wiggle and make noises and yell to try and get to him. She loves to play games with her dad. Her favorite game is one where she throws her head down so she can get praise for trying to lift it back up. She could do it all day long and smiles like crazy when she plays her game. I worry that Georgia is bored because of her limitations. Most of her day is spent just sitting with me and playing with her sister. But I think she is happy and content. As for what my life is like, as you can imagine, its crazy and hectic and nothing like what I thought it would be. Raising twins is one thing, but then adding a special needs child into the equation makes it that much more difficult. I love my kids more than anything and I have the best husband in the world. Its not an easy life but its definitely worth it. Georgia only knows 2 words, "Ma" and "Home" but in one look I can tell that I am her whole world and she is mine and that's all I need. If you'd like to read more about Georgia and our family our blog is http://www.wagnermania.blogspot.com/.

The Purpose Of This Blog

I decided to start this blog because I found myself often complaining about how people just didn't understand what it was like to have a child with special needs. I felt alone and abandoned. I figured instead of complaining about it, I would lay it all out on the table, my thoughts, my feelings, my day to day activities, the good, the bad, and the ugly. There will be talk of poop. As any special needs mom knows your life revolves around poop. But there will also be talk of the most heart melting smile you have ever seen. I will try to update often so that you can get an accurate portrayal of what my life is really like, but my children come first so it may not be as often as I'd like. I will leave nothing out. Some things I say might not be politically correct or might offend people but whatever I say is my own opinion and should be viewed as such. I hope this will help educate people about what I go through and the immense blessing that a child with special needs can be. Welcome to A Day In The Life Of Special Needs.