These past few weeks have been thankfully hectic. My brother brought his family down to visit for a week, and shortly after that my grandmother came down with an aunt I had not seen in years. I had time for little else, but I enjoyed the visits with family and welcomed the distraction from our everyday problems. (Auntie Cindy, the munchkins are STILL attached to their blankies - thank you thank you!)
We met with Breland a few days back and signed the paperwork for my tubal ligation surgery. They'll do the procedure the day after Beckett is born, whenever that may be. We're sure we don't wan't to try for another baby - there's a possibility this genetic mutation may still be present and it could very well affect any other children we conceive. It's a scary thought. This is all hard enough without having to think about another one of our babies struggling through the same thing. Beckett will be our last and that's how it's going to be.
We have two more appointments set up at Sacred Heart in Pensacola. I had originally planned on no longer visiting with them since we were told that there was nothing they could do to help her. I didn't want to have to drive out of town just so they could tell me again that she's sick and there's no chance for survival. These next few appointments are for a different purpose - the first is a fetal MRI (which is a lot more invasive than I thought it would be.) The pediatric neurosurgeon in Gainesville wants to look closely at Beckett's brain and discern exactly what sort of Dandy Walker syndrome she has. Whether the results will change his mind about the ECMO machine being used, I'm not sure but I'm not going to get my hopes up. The second appointment is to meet with Dr Dobak to discuss the procedure involved with donating her organs. We're not even sure they can be used at this point and during a recent ultrasound, we found that one of her kidneys had slipped into her chest cavity and would most likely not be viable. That leaves one kidney. Dr Dobak will have the answers and that's what I've been waiting for. I don't want her life to be JUST a tragic story - I want part of her to help someone. We leave for Pensacola on Thursday, November 5th.
In an effort to educate people on Beckett's particular syndromes, we agreed to be shown to medical students at a college here in town. Ultrasound technicians and nurses filtered in all around us in a half emergency room, half classroom setting. They asked a lot of questions about our other children, about Beckett's prognosis and about our plans. An ultrasound was done, showing each of the defects. The students were quizzed during the ordeal and the administrators answered not-so-average questions that you wouldn't find in text books. Her little heart looks more squished than usual and I'm afraid it's not strong enough to hold out until delivery. There seem to be more organs stuffed into her chest, which isn't a good sign either. Nothing was too difficult to deal with until they started focusing on her hands. Beckett had the hiccups at that moment which was making her hand leap away from her mouth, then land back on it in some fetal version of peek-a-boo. It reminded me of my youngest child playing "where's the baby", and I couldn't help but cry. I can't get past the fact that I'll never see her do any of these normal baby things. I'll never be able to wrap her up in blankets, feed her or even play peek-a-boo. The stupid little things you get sick of when you have to do them everyday. It's an awful, sludgy feeling. Everyone at the event was very professional and the main administrator walked me to the elevator when it was all over. It was then that I noticed she was crying and I didn't know what to say to her. I sometimes forget that other people are affected by Beckett (or rather, the whole situation) and am dumbfounded when I have to comfort them. I hugged her and agreed to come back when I had an opportunity. There are always more students to teach.
On a happier note, the bookstore I previously worked for (Borders) has released it's holiday bear. It's a panda named Beckett. You can view the bear here. It's a huge coincidence that a company I worked for (and my father STILL works for) has designated this limited edition, brand new bear with my unborn baby's name as their holiday mascot. I'm always amazed at how the world works. My ex-supervisor bought one for me just yesterday, and I'm excited to have a forever reminder of our little girl.
More updates next week when we get back from Pensacola.
Thursday, October 29, 2009
Wednesday, October 7, 2009
She Has Fingers
As I'm sitting down to type this out, my stomach is already lurching. Anytime I actually have to think it all out and try to put it to words, my whole digestive system flares up angrilly. We left for Gainesville early in the morning of October 6th. Our first appointment that day was with Dr Richards (and his technicians) and the ultrasounds they performed took over two hours. The first technician was really very sweet - she would explain everything she was looking at during the ultrasound and was happy to point out that Beckett has fingers and toes and does not, in fact, have clubbed limbs. She even printed a little picture of five fingers waving at us and typed "Hi Mom And Dad!" on the sheet. When she scanned Beckett's face, I was horrified. She has a bilateral cleft palate, which means both nostrils flare down into an opening that leaves the entire top portion of her mouth agape. She has no top jaw to speak of. Just the tip of her nose and then nothing. The picture reminded me of a lion's face, so she imeediately became our little 'kitten'.
The second ultrasound was performed by Dr Richards himself. With him was a team consisting of a medical student and a resident who had been researching Beckett's strange case. The long hours were filled with medical jargon and terminology that we couldn't understand. They measured in depth the size of each of her organs, her brains, certain veins, ventricles and other various tidbits that we couldn't keep track of. There were two separate types of ultrasounds, and 'invasive' does not begin to describe the sort of procedures they were.
He sat down with us after speaking with his team and calmly made a list. One side of the list said "Things we like". It contained "Fingers", "Toes", "Kidneys"... not much else. The second side of the list said "Things we don't like." It filled the paper. He told us that she had Hydrocephalus, which is water on the brain. He also said that she was no normal case though, and that her brain was almost entirely fluid. The brain tissue was minimal - no more than a sliver against one wall. The diagrams he drew were pitiful. He said it meant she had a syndrome called "Dandy Walker". Her brain would not sustain much activity.
Her Diaphgragmatic hernia was not normal either, he explained. Her bowels, stomach, gall bladder and part of her liver were pushed into her chest, leaving one lung tiny and malformed with the other not even present. Her heart has a small malformation somewhere in the septem, but it wasn't anything life threatening. He then sent us on our way and we had to wait several hours before our second appointment with the pediatric surgeon.
We spent the time visiting the museum of natural history there on the campus of UF. We also strolled through the museum of art, had lunch at the cafe and cried over our meals. It was a beautiful setting. Butterflies floated all around, lizards sprang back and forth and large koi ponds were raised in geometric shapes to provide an artsy getaway for the college students. Everything was just too pretty and serene. I was mad at it for looking so normal. I was literally angry that the world was continuing to be just as great and stimulating while my baby was continuing her malformed struggle into creation. She was not pristine or perfect and how dare anything be sunny or gorgeous on a day like that.
When we entered the children's ward for our appointment, it hit us. There were sick children everywhere. Boys in wheelchairs, bald from their battles with cancer. Little girls with MS, laid back in strollers and drooling at their absent-minded mothers. The one that really got to Phil was a little boy I hadn't seen - an obviously mentally handicapped child in a wheelchair with one of his legs turned backward. Phil was actually fine with the sight until the boy started to cry, a pathetic little sound of desperation, and he could no longer take it. We were both miserable messes, crying and wiping futilly at tears we couldn't make go away.
The nurses finally took us back and started my vitals. The first asked quietly how I was doing and they passed my paperwork back and forth. They were all staring at me sadly and I knew that was a bad sign. These women deal with sick, terminally ill children every day, and they were taking pity on me. I held my breath. They moved us into a private room to wait for Dr Kayes and on the ceiling were hand-painted tiles from children who had stayed at the facility. One finger-drawn piece said "It may be hard, it may be rough, but you can do it! I know you can!" I lost it. I bawled and shrunk and clutched myself so tightly I thought I would suffocate. We were left alone for a long time in that room and I managed to straighten up enough to be polite when Dr Kayes finally came in.
He was friendly and looked us straight in the eye. He didn't start with anything medical. He asked us how long we had been married, what our other children were named and what they were like. He said he liked to get to know all of his families and he cared very much for each case he worked with. He referred to Beckett as "your little girl" and skirted around the issue of her brain for nearly a half hour. We talked about her lip and the plastic surgeries that would ensue We discussed the severity of her hernia and the size of her lungs. He has about thirty cases a year of Diaphragmatic Hernias, and in his experience, babies with lungs smaller than a .9 don't survive any kind of surgery. Beckett's lungs are a .6 but we still hadn't lost hope.
The details about the surgery to correct her diaphragm included a machine called the ECMO, which would circulate her blood outside of her body to make sure she stayed oxygenated. The problem with this procedure is that they have to remove the blood from her throat and replace it into a vein in her brain. In normal cases, children with fully developed brains have severe defects due to the procedure and end up retarded. A case like Beckett's, where she has only a sliver of brain tissue and little activity, would mean total degradation of her brain, leading to a vegetative state. She would be, more or less, braindead after the surgery. They would not perform the surgery on someone who was not technically 'alive'. That was the part we were dreading.
He said the only treatment they would give her, if any, was ventilation to keep her organs alive. She would eventually have to be removed from life support and would, in essence, have to be killed off.
Explaining the process of birth to us, we learned that children that young have no concept of struggle, pain or any other learned function. She would not struggle very hard to breathe during birth because she wouldn't know what it was, since she has no lung function. She would feel no pain and have no understanding of what was happening. If we put her on ventilation, she would learn what it was to breathe, eventually develop feeling and would suffer if we removed her from the machine.
She has no chance of survival at this point. The specialists are interested in what sort of "Dandy Walker" she has and would like to do additional testing, including an MRI on both me an the baby. The tests are simply educational though, and provide no idea or hope for a different prognosis. She is going to die - it's just up to us whether she suffers or not.
We've decided not to put her on ventilators. When she's ready to be born, we'll let it happen naturally and we'll hold her for the few short moments she's alive. We'll cradle her and tell her how much we love her, keep her warm and close to us until she's ready to go. The Drs said she wouldn't last more than ten minutes, and to be quite honest, they dont expect her to last more than two once she's out of the womb.
Hearing that she wouldn't be able to breathe (because she doesn't have the capacity), scared the hell out of me. All I kept imagining was a fish out of it's tank, flailing on the ground, gasping for breath. Dr Kayes was very patient with explaining that she won't be struggling like that and that it's most important to make sure she knows she's safe and loved with the little time she has. I couldn't breath while he was talking. I sat there heaving, chipping out these fractures of words I couldn't completely form, trying to make some intelligible question come out of my mouth. In a moment of stark reality, he said, "It sucks, and I'm so sorry."
He sat with us a long time, reiterating what could and could not be done. There's no medical procedure that can help her in any way. Any sort of treatment would prolong her struggle and end up injuring her and putting her in pain. I wasn't going to see my baby suffer anymore.
We'll be delivering here in town, where they have no capacity to assist her. She'll be birthed, placed directly in my arms and will stay there until we hand her over to have her body prepared. Phillip expressed his worry about being able to handle holding her, and I told him he wouldn't have to. I doubt I'll be able to let her go once I have her. She'll only be with us for a short span of time, but that will be the most important time we've ever spent with anyone.
Now comes the finalization of plans. We've discussed open or closed caskets - Phil prefers closed so that whomever is at the funeral will not gawk or be disturbed by the massive malformation of her face.m (the following link shows a rather gruesome explanation of what a cleft lip is. Beckett's is bilateral, meaning both sides. Don't click if you're easily disturbed. I'm seriously warning you, but for those of you who are curious, click here ) I prefer open - I want to see her before she's taken from me for a final time. I want to cling to what she looks like, because I know once she's in the ground, I'll start to forget. We've decided to bury her with the blanket that Auntie Cindy made for her. We have the cakset picked, the flowers picked.. we still need a location and a way to pay for everything.
I'm very cynical right now and I'm not handling things the way I should be. When my mother told me that someone said to her, "She'll be an angel in heaven", I didn't want to hear it. I really don't want to listen about how wonderful heaven is going to be for her. She's going to be a great help to someone right here on earth. Her only really viable organs are her kidneys, so we will most likely be donating them to Shands, in Gainesville. There are many children waiting for organs, who's lives depend on receiving them, and Beckett can help. She's coming to make sure that some other baby, who's just a little bit healthier than she, has a fighting chance at life. Some family is going to have years of memories and holidays with their child because of her. That's her purpose. That's all I need to know.
She has been an important, life changing catalyst in all of our lives. We will always have three children and we won't let anyone forget.
If there are further appointments, I'll update you.
The second ultrasound was performed by Dr Richards himself. With him was a team consisting of a medical student and a resident who had been researching Beckett's strange case. The long hours were filled with medical jargon and terminology that we couldn't understand. They measured in depth the size of each of her organs, her brains, certain veins, ventricles and other various tidbits that we couldn't keep track of. There were two separate types of ultrasounds, and 'invasive' does not begin to describe the sort of procedures they were.
He sat down with us after speaking with his team and calmly made a list. One side of the list said "Things we like". It contained "Fingers", "Toes", "Kidneys"... not much else. The second side of the list said "Things we don't like." It filled the paper. He told us that she had Hydrocephalus, which is water on the brain. He also said that she was no normal case though, and that her brain was almost entirely fluid. The brain tissue was minimal - no more than a sliver against one wall. The diagrams he drew were pitiful. He said it meant she had a syndrome called "Dandy Walker". Her brain would not sustain much activity.
Her Diaphgragmatic hernia was not normal either, he explained. Her bowels, stomach, gall bladder and part of her liver were pushed into her chest, leaving one lung tiny and malformed with the other not even present. Her heart has a small malformation somewhere in the septem, but it wasn't anything life threatening. He then sent us on our way and we had to wait several hours before our second appointment with the pediatric surgeon.
We spent the time visiting the museum of natural history there on the campus of UF. We also strolled through the museum of art, had lunch at the cafe and cried over our meals. It was a beautiful setting. Butterflies floated all around, lizards sprang back and forth and large koi ponds were raised in geometric shapes to provide an artsy getaway for the college students. Everything was just too pretty and serene. I was mad at it for looking so normal. I was literally angry that the world was continuing to be just as great and stimulating while my baby was continuing her malformed struggle into creation. She was not pristine or perfect and how dare anything be sunny or gorgeous on a day like that.
When we entered the children's ward for our appointment, it hit us. There were sick children everywhere. Boys in wheelchairs, bald from their battles with cancer. Little girls with MS, laid back in strollers and drooling at their absent-minded mothers. The one that really got to Phil was a little boy I hadn't seen - an obviously mentally handicapped child in a wheelchair with one of his legs turned backward. Phil was actually fine with the sight until the boy started to cry, a pathetic little sound of desperation, and he could no longer take it. We were both miserable messes, crying and wiping futilly at tears we couldn't make go away.
The nurses finally took us back and started my vitals. The first asked quietly how I was doing and they passed my paperwork back and forth. They were all staring at me sadly and I knew that was a bad sign. These women deal with sick, terminally ill children every day, and they were taking pity on me. I held my breath. They moved us into a private room to wait for Dr Kayes and on the ceiling were hand-painted tiles from children who had stayed at the facility. One finger-drawn piece said "It may be hard, it may be rough, but you can do it! I know you can!" I lost it. I bawled and shrunk and clutched myself so tightly I thought I would suffocate. We were left alone for a long time in that room and I managed to straighten up enough to be polite when Dr Kayes finally came in.
He was friendly and looked us straight in the eye. He didn't start with anything medical. He asked us how long we had been married, what our other children were named and what they were like. He said he liked to get to know all of his families and he cared very much for each case he worked with. He referred to Beckett as "your little girl" and skirted around the issue of her brain for nearly a half hour. We talked about her lip and the plastic surgeries that would ensue We discussed the severity of her hernia and the size of her lungs. He has about thirty cases a year of Diaphragmatic Hernias, and in his experience, babies with lungs smaller than a .9 don't survive any kind of surgery. Beckett's lungs are a .6 but we still hadn't lost hope.
The details about the surgery to correct her diaphragm included a machine called the ECMO, which would circulate her blood outside of her body to make sure she stayed oxygenated. The problem with this procedure is that they have to remove the blood from her throat and replace it into a vein in her brain. In normal cases, children with fully developed brains have severe defects due to the procedure and end up retarded. A case like Beckett's, where she has only a sliver of brain tissue and little activity, would mean total degradation of her brain, leading to a vegetative state. She would be, more or less, braindead after the surgery. They would not perform the surgery on someone who was not technically 'alive'. That was the part we were dreading.
He said the only treatment they would give her, if any, was ventilation to keep her organs alive. She would eventually have to be removed from life support and would, in essence, have to be killed off.
Explaining the process of birth to us, we learned that children that young have no concept of struggle, pain or any other learned function. She would not struggle very hard to breathe during birth because she wouldn't know what it was, since she has no lung function. She would feel no pain and have no understanding of what was happening. If we put her on ventilation, she would learn what it was to breathe, eventually develop feeling and would suffer if we removed her from the machine.
She has no chance of survival at this point. The specialists are interested in what sort of "Dandy Walker" she has and would like to do additional testing, including an MRI on both me an the baby. The tests are simply educational though, and provide no idea or hope for a different prognosis. She is going to die - it's just up to us whether she suffers or not.
We've decided not to put her on ventilators. When she's ready to be born, we'll let it happen naturally and we'll hold her for the few short moments she's alive. We'll cradle her and tell her how much we love her, keep her warm and close to us until she's ready to go. The Drs said she wouldn't last more than ten minutes, and to be quite honest, they dont expect her to last more than two once she's out of the womb.
Hearing that she wouldn't be able to breathe (because she doesn't have the capacity), scared the hell out of me. All I kept imagining was a fish out of it's tank, flailing on the ground, gasping for breath. Dr Kayes was very patient with explaining that she won't be struggling like that and that it's most important to make sure she knows she's safe and loved with the little time she has. I couldn't breath while he was talking. I sat there heaving, chipping out these fractures of words I couldn't completely form, trying to make some intelligible question come out of my mouth. In a moment of stark reality, he said, "It sucks, and I'm so sorry."
He sat with us a long time, reiterating what could and could not be done. There's no medical procedure that can help her in any way. Any sort of treatment would prolong her struggle and end up injuring her and putting her in pain. I wasn't going to see my baby suffer anymore.
We'll be delivering here in town, where they have no capacity to assist her. She'll be birthed, placed directly in my arms and will stay there until we hand her over to have her body prepared. Phillip expressed his worry about being able to handle holding her, and I told him he wouldn't have to. I doubt I'll be able to let her go once I have her. She'll only be with us for a short span of time, but that will be the most important time we've ever spent with anyone.
Now comes the finalization of plans. We've discussed open or closed caskets - Phil prefers closed so that whomever is at the funeral will not gawk or be disturbed by the massive malformation of her face.m (the following link shows a rather gruesome explanation of what a cleft lip is. Beckett's is bilateral, meaning both sides. Don't click if you're easily disturbed. I'm seriously warning you, but for those of you who are curious, click here ) I prefer open - I want to see her before she's taken from me for a final time. I want to cling to what she looks like, because I know once she's in the ground, I'll start to forget. We've decided to bury her with the blanket that Auntie Cindy made for her. We have the cakset picked, the flowers picked.. we still need a location and a way to pay for everything.
I'm very cynical right now and I'm not handling things the way I should be. When my mother told me that someone said to her, "She'll be an angel in heaven", I didn't want to hear it. I really don't want to listen about how wonderful heaven is going to be for her. She's going to be a great help to someone right here on earth. Her only really viable organs are her kidneys, so we will most likely be donating them to Shands, in Gainesville. There are many children waiting for organs, who's lives depend on receiving them, and Beckett can help. She's coming to make sure that some other baby, who's just a little bit healthier than she, has a fighting chance at life. Some family is going to have years of memories and holidays with their child because of her. That's her purpose. That's all I need to know.
She has been an important, life changing catalyst in all of our lives. We will always have three children and we won't let anyone forget.
If there are further appointments, I'll update you.
Friday, October 2, 2009
No News is Good News
The visit with Breland took longer than we expected. He had an emergency C-Section to attend to, so we were shuffled in and out through a two hour procedure just to see him. It took him a minute or so to even find Beckett's heartbeat and that scared me so badly, I literally felt pins in my skin as my adrenaline surged. When he found the little sound, it was distant but very fast. She's still alive and her eager heart is thumping just as hard as it can.
We went over the schedule for the next few weeks. Visits here, doctors there and another trip to his office in two weeks time. Nothing has changed so far, and that's great news.
The other night, I took some time to do some more research into Beckett's medical issues. She has so much working against her right now - it just doesn't seem fair. If she survives the brain defects, she still has to deal with the hernia. If she survives with the hernia and we're able to get her into surgery, she'll have to survive that whole ordeal. If she survives surgery, she'll have to go through more surgery for her face and will have to avoid fatal illnesses from those complications. If she makes it through everything, the simple act of eating could cause choking, pneumonia or even death. It's all terrifying. It's hard to imagine that she can overcome all of these obstacles. How many people have to go through half of what she's dealing with right now? How many people survive? I remind myself that it could all be worse - but there's really only two ways it COULD be worse. She could have Trisomy, but she doesn't. She could have passed by now, but she hasn't. There is still the threat of clubbed feet and hands, deafness, blindness, retardation, organ failure and the big one, death.
It sounds crazy, but when we thought she had Trisomy, it was easier to think of her funeral. It was a certain thing - she would pass and we would have to move on immediately, so we needed to prepare and just be tough. But now that there's this slim chance of survival, it makes everything so much harder. The hope builds every day that I feel her move and each time we hear her heartbeat, I think that maybe the doctors are wrong and she's going to be just fine. I'm scared that I'm setting myself up for a huge defeat. When we thought she was fatally ill with Trisomy, I thickened my skin and made arrangements. Now she's got a shot, and I'm scared as hell. I'm so desperate for her to make it through all this that I'm not sure what will happen if she doesn't. It was just easier to detach and be systematic about it all. She just keeps urging onward and I'm her biggest cheerleader - quietly celebrating each time she kicks and laughing when she slides around in my belly. I'm a giant, terrible mess when it comes to my children being in danger. I can't do anything but cry and shut down when Seph or Mina are hurt so I don't imagine I'll be anymore help to poor Beckett when her time comes.
I'm tired - don't sleep well. I'm nervous about the upcoming appointments and tend to get a little manic when we have to sit in waiting rooms. My heart is racing at just the thought of meeting these specialists in Gainesville. These men and women will know more about my child's situation and medical needs than I have ever learned about history, mathetmatics and art combined. They have studied longer about these rare instances than the span of my short life and it makes me feel small and insignificant. I have real, worrysome questions I need to ask but they all seem so dumb when I think of what these people deal with on a daily basis. I'm afraid if I ask things like "Can you give her a lung?" or "Can you give her something for her pain?", I'll get laughed at or scoffed at. I'm clueless about my own daughter's needs because the majority of the world's population has never had to deal with these sort of circumstances. Dr Dobak was genuinely compassionate and took his time with explaining things, so logically I'm sure these new specialists will be just as kind. But they're surgeons, internists, neonatal giants in their fields. I don't want to walk in, crying like an idiot and beg them to help her however they can. I want to know what to ask so that I get some definitive answers. I don't want to be the dumb mom that they just pat on the head and work around to get the job done. It's all.... stressful and depressing.
My mood bounces back and forth about all of this. Beckett, my expectations for her, the specifics of her medical difficulties, my other children, my family angle... It's hard to stay level-headed when there is so much to think about.
I'm exhausted. If I don't update before Tuesday, I'll surely do it Wednesday when we get back from Gainesville. Thank you to everyone who's subscribed to this blog or is following it on their own. It's good to know that people are reading and care for all of us.
We went over the schedule for the next few weeks. Visits here, doctors there and another trip to his office in two weeks time. Nothing has changed so far, and that's great news.
The other night, I took some time to do some more research into Beckett's medical issues. She has so much working against her right now - it just doesn't seem fair. If she survives the brain defects, she still has to deal with the hernia. If she survives with the hernia and we're able to get her into surgery, she'll have to survive that whole ordeal. If she survives surgery, she'll have to go through more surgery for her face and will have to avoid fatal illnesses from those complications. If she makes it through everything, the simple act of eating could cause choking, pneumonia or even death. It's all terrifying. It's hard to imagine that she can overcome all of these obstacles. How many people have to go through half of what she's dealing with right now? How many people survive? I remind myself that it could all be worse - but there's really only two ways it COULD be worse. She could have Trisomy, but she doesn't. She could have passed by now, but she hasn't. There is still the threat of clubbed feet and hands, deafness, blindness, retardation, organ failure and the big one, death.
It sounds crazy, but when we thought she had Trisomy, it was easier to think of her funeral. It was a certain thing - she would pass and we would have to move on immediately, so we needed to prepare and just be tough. But now that there's this slim chance of survival, it makes everything so much harder. The hope builds every day that I feel her move and each time we hear her heartbeat, I think that maybe the doctors are wrong and she's going to be just fine. I'm scared that I'm setting myself up for a huge defeat. When we thought she was fatally ill with Trisomy, I thickened my skin and made arrangements. Now she's got a shot, and I'm scared as hell. I'm so desperate for her to make it through all this that I'm not sure what will happen if she doesn't. It was just easier to detach and be systematic about it all. She just keeps urging onward and I'm her biggest cheerleader - quietly celebrating each time she kicks and laughing when she slides around in my belly. I'm a giant, terrible mess when it comes to my children being in danger. I can't do anything but cry and shut down when Seph or Mina are hurt so I don't imagine I'll be anymore help to poor Beckett when her time comes.
I'm tired - don't sleep well. I'm nervous about the upcoming appointments and tend to get a little manic when we have to sit in waiting rooms. My heart is racing at just the thought of meeting these specialists in Gainesville. These men and women will know more about my child's situation and medical needs than I have ever learned about history, mathetmatics and art combined. They have studied longer about these rare instances than the span of my short life and it makes me feel small and insignificant. I have real, worrysome questions I need to ask but they all seem so dumb when I think of what these people deal with on a daily basis. I'm afraid if I ask things like "Can you give her a lung?" or "Can you give her something for her pain?", I'll get laughed at or scoffed at. I'm clueless about my own daughter's needs because the majority of the world's population has never had to deal with these sort of circumstances. Dr Dobak was genuinely compassionate and took his time with explaining things, so logically I'm sure these new specialists will be just as kind. But they're surgeons, internists, neonatal giants in their fields. I don't want to walk in, crying like an idiot and beg them to help her however they can. I want to know what to ask so that I get some definitive answers. I don't want to be the dumb mom that they just pat on the head and work around to get the job done. It's all.... stressful and depressing.
My mood bounces back and forth about all of this. Beckett, my expectations for her, the specifics of her medical difficulties, my other children, my family angle... It's hard to stay level-headed when there is so much to think about.
I'm exhausted. If I don't update before Tuesday, I'll surely do it Wednesday when we get back from Gainesville. Thank you to everyone who's subscribed to this blog or is following it on their own. It's good to know that people are reading and care for all of us.
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