Friday, September 30, 2011
Tuesday, September 27, 2011
Updating this blog, I think it has been awhile since I have posted here......
Sept. 20
Posted Sep 20, 2011 5:21pm
Happy Birthday to my sweet Avery Kate! What a crazy first year it has been! As hard as it is to be in the hospital, so far from home, family, and friends, and to have Avery in such a fragile state, I am very blessed in so many ways. Avery has taught me so many things: to hang on to hope, to fight, to love deeply, to be independent, and much much more. She has given me a whole new perspective on life and love.
Today we started her day with lifting the paralytic meds. It was so nice to see her open her eyes. There were lots of balloons (luckily her birthday was not affected by the helium shortage), a big chocolate cake, a few presents and cards. Many people came by to say happy birthday and the lady that plays the guitar came in to sing a few special songs. It was a happy but tough day.
No fever today and none of the cultures sent off have grown anything. All good news thus far. I hope that they can start feeding her (via j-tube) tonight or tomorrrow.
Thank you for all the sweet birthday messages and many thanks to those who sent cards or presents. It feels great to be so loved and thought of.
Today we started her day with lifting the paralytic meds. It was so nice to see her open her eyes. There were lots of balloons (luckily her birthday was not affected by the helium shortage), a big chocolate cake, a few presents and cards. Many people came by to say happy birthday and the lady that plays the guitar came in to sing a few special songs. It was a happy but tough day.
No fever today and none of the cultures sent off have grown anything. All good news thus far. I hope that they can start feeding her (via j-tube) tonight or tomorrrow.
Thank you for all the sweet birthday messages and many thanks to those who sent cards or presents. It feels great to be so loved and thought of.
Sept. 21
A traumatizing day.
Got up early to check out of my nice room at the Yawkey, they do not have anything available until Friday. Which was fine. Got to the hospital, Avery did not have such a great night. She would wake up needing suctioned and then her heart rate and 02 would go down really really low. They had to turn back on the sedation over night, they took it off, and then had to turn it back on early afternoon. Things seemed to settle down so I took a long lunch and went to get my hair cut with another mom. I was feeling a little better after that but when I returned things went downhill. I came in and Avery was sleeping. She woke up and needed to be suctioned. Her nurse had gone to lunch so I called for someone to come help. There was a nurse at the desk and three doctors standing by. No one came. The alarms started going off. No one came. Her 02 kept dropping and dropping, alarms ringing, and Avery was turning blue. No one was moving. I basically had to yell in someones face. What if I had not been there???? So then they had to consult half the hospital on why she was having so many episodes. Everyone had a different opinion. They decided that maybe it was the breathing tube that was causing all the problems. The doctors took out the tube (another not so fun thing to watch). So far she has been ok on the high flow canula with some chest PT and steriods. There are no sleep spaces available, I may have to sleep on the "bench" in the back of the room. It may be better that way since some of the nurses here do not know how to properly cover their patients. I am so tired of having to yell at people and demand better care. I would post a pic of my new hair do but I don't look so cute after crying and yelling for the past two hours =(
Got up early to check out of my nice room at the Yawkey, they do not have anything available until Friday. Which was fine. Got to the hospital, Avery did not have such a great night. She would wake up needing suctioned and then her heart rate and 02 would go down really really low. They had to turn back on the sedation over night, they took it off, and then had to turn it back on early afternoon. Things seemed to settle down so I took a long lunch and went to get my hair cut with another mom. I was feeling a little better after that but when I returned things went downhill. I came in and Avery was sleeping. She woke up and needed to be suctioned. Her nurse had gone to lunch so I called for someone to come help. There was a nurse at the desk and three doctors standing by. No one came. The alarms started going off. No one came. Her 02 kept dropping and dropping, alarms ringing, and Avery was turning blue. No one was moving. I basically had to yell in someones face. What if I had not been there???? So then they had to consult half the hospital on why she was having so many episodes. Everyone had a different opinion. They decided that maybe it was the breathing tube that was causing all the problems. The doctors took out the tube (another not so fun thing to watch). So far she has been ok on the high flow canula with some chest PT and steriods. There are no sleep spaces available, I may have to sleep on the "bench" in the back of the room. It may be better that way since some of the nurses here do not know how to properly cover their patients. I am so tired of having to yell at people and demand better care. I would post a pic of my new hair do but I don't look so cute after crying and yelling for the past two hours =(
Sept. 26
Friday, Kevin and Aiden arrived. It was so nice to see them! Avery had a pretty sleepy day that day. On Saturday we took Aiden to the Children's Museum, he had a great time there (but I still think he enjoyed the elevators and the metal ball machine in the hospital lobby the most).
Sunday morning Avery decided to extubate herself (she pulled out her breathing tube). Thankfully, she was ok and she did not need it put back in. She has been fine on the nasal canula and may not even need that after tomorrow. She has been much happier with out that breathing tube in. I finally have my smiley girl back. While Avery napped on Sunday we took Aiden to the Boston Common where he got to run around and feed the ducks.
It was a very nice day. Kevin got to hold Avery on Sunday and Monday, so that was nice. Today (Monday) Kevin and Aiden had to leave. I was very sad to see them go. Avery had to have her chest tube pulled out about a cm. That was not fun for either of us. Then her IV infiltrated again. At some point tonight they will have to try to put in another one. A swallow study is scheduled for Thursday and then if that goes ok, she will have another gastric emptying study done Friday or Monday.
Here are some more pics from the weekend.
Sunday morning Avery decided to extubate herself (she pulled out her breathing tube). Thankfully, she was ok and she did not need it put back in. She has been fine on the nasal canula and may not even need that after tomorrow. She has been much happier with out that breathing tube in. I finally have my smiley girl back. While Avery napped on Sunday we took Aiden to the Boston Common where he got to run around and feed the ducks.
It was a very nice day. Kevin got to hold Avery on Sunday and Monday, so that was nice. Today (Monday) Kevin and Aiden had to leave. I was very sad to see them go. Avery had to have her chest tube pulled out about a cm. That was not fun for either of us. Then her IV infiltrated again. At some point tonight they will have to try to put in another one. A swallow study is scheduled for Thursday and then if that goes ok, she will have another gastric emptying study done Friday or Monday.
Here are some more pics from the weekend.
waiting for the T
doctor in training
Sunday, September 18, 2011
Sept. 18
Slow, quiet day. Not much to really update. Avery is still stable with plans to get a new picc line in IR sometime tomorrow and hopfully have the sedation meds turned off on Tuesday. I decorated her room a little more for her birthday and added an "All About Me" poster complete with pictures. I guess you can take the girl away from teaching but you can't take the teacher out of the girl. Trying to decide what to have for dinner. The selection in the cafeteria is horrendous on the weekends so I am debating between McDonalds (ew) or Subway (ew). I am missing southern food terribly.
Kevin and Aiden should be coming for a visit on Friday. I am super excited. Already got tickets to the Childrens Museum for Aiden, I think he is really going to like it. Though he will probably still like the plane ride, the elevator, and the big metal ball machine in the lobby the most.
Tonight is my last night at the Yawkey and I will start staying back at the hospital again. Can't afford to stay there all the time but it sure is a nice break from time to time and the free meals they provide from time to time is always a plus.
I may take the dreaded bus to Target tomorrow.
Thank you to Becky for the package that arrived yesterday, can't wait to see what is inside. And we recieved cards from Aunt Carol, Meagan, and Kevin's grandparents (the Farnsworths) too. Thank you! I will open everything on Avery's birthday or when Kevin and Aiden get here. Our sweet nurse has vowed to get Avery a balloon for her birthday despite the helium shortage, we will see if she pulls through ;)
Kevin and Aiden should be coming for a visit on Friday. I am super excited. Already got tickets to the Childrens Museum for Aiden, I think he is really going to like it. Though he will probably still like the plane ride, the elevator, and the big metal ball machine in the lobby the most.
Tonight is my last night at the Yawkey and I will start staying back at the hospital again. Can't afford to stay there all the time but it sure is a nice break from time to time and the free meals they provide from time to time is always a plus.
I may take the dreaded bus to Target tomorrow.
Thank you to Becky for the package that arrived yesterday, can't wait to see what is inside. And we recieved cards from Aunt Carol, Meagan, and Kevin's grandparents (the Farnsworths) too. Thank you! I will open everything on Avery's birthday or when Kevin and Aiden get here. Our sweet nurse has vowed to get Avery a balloon for her birthday despite the helium shortage, we will see if she pulls through ;)
Sept. 17
My toes are cold. Another fall like day here in Boston. Avery had another stable day. They did decide that her picc line (longer lasting IV) was too big and needed to be moved because it was minimizing blood flow and is potential for a clot. They could not do it bedside so Monday she will go back to IR and have one put in her other arm or potentially somewhere else. Other than that, no changes were made.
I decided to go to the real people mall to try to find Avery a birthday present. Yes I call it the real people mall. It has decent (no so expensive stores). The mall near the hospital (The Prudential) has more high end shops and I just can not bring myself to buy Avery (or myself for that matter) a $30-40 dress. I did not know that the green line was shut down for the last couple of stops so I had to get off and take the shuttle. Man, that took FOREVER!! On the way back (on the shuttle) a truck cut off the shuttle and our driver was hanging out the window yelling at this guy. Then that guy got out of his truck and starting yelling back at our shuttle driver. It was crazy. People that drive in Boston are just crazy. Luckily, the light turned green shortly after and everyone got back to driving instead of yelling crazy things at each other. This reminds me that yeserday when I was walking to the party store, a car was backing out of the driveway and this woman saw him, but she did not want to wait so she kept going. He almost hit her and she started banging away on his car with her newspaper. It was hilarious.
After all the delays of waiting for the T and having to take the shuttle I should have just taken the bus to Target. I might go tomorrow, I still have not decided yet.
I decided to go to the real people mall to try to find Avery a birthday present. Yes I call it the real people mall. It has decent (no so expensive stores). The mall near the hospital (The Prudential) has more high end shops and I just can not bring myself to buy Avery (or myself for that matter) a $30-40 dress. I did not know that the green line was shut down for the last couple of stops so I had to get off and take the shuttle. Man, that took FOREVER!! On the way back (on the shuttle) a truck cut off the shuttle and our driver was hanging out the window yelling at this guy. Then that guy got out of his truck and starting yelling back at our shuttle driver. It was crazy. People that drive in Boston are just crazy. Luckily, the light turned green shortly after and everyone got back to driving instead of yelling crazy things at each other. This reminds me that yeserday when I was walking to the party store, a car was backing out of the driveway and this woman saw him, but she did not want to wait so she kept going. He almost hit her and she started banging away on his car with her newspaper. It was hilarious.
After all the delays of waiting for the T and having to take the shuttle I should have just taken the bus to Target. I might go tomorrow, I still have not decided yet.
Friday, September 16, 2011
Avery had a decent night. So did I. It was nice to be able to watch TV and drift off to sleep without constant interruptions or machines beeping. It was dark and quiet (other than when the train came rushing by). I was able to take a shower, dry my hair, and put on my face like a normal person. People may have been shocked when I walked in today, I probably looked very different! Thanks to Kara's wonderful gift, it was fruit for breakfast this morning. Fall has certainly arrived here in Boston. When I stepped outside this morning there was a cool, crisp breeze. Made me want a hoodie, boots, and hot apple cider.
All things considered, Avery looks good. They are a little concerned about her arm because it is a little cold and her pulse is a little weak. As with everything, they will keep an eye on it. I know more about the body, how it works, problems that can arise from surgery, vent settings.......uggghh. I really believe a Harvard Medical Degree should be presented to be at the time of discharge. Todays big plans involve sitting with Avery, going to pick up some pictures at Walgreens, and maybe decorating her room a bit (after we change rooms). There is another Knight right beside us now...we do NOT need to have anything get mixed up with that patient, because that WOULD happen to US.
Here is the picture of the edible arrangement I recieved from Kara, isn't it GREAT??!! I would have included a picture from my own camera but I dug into it as soon as it arrived!!
All things considered, Avery looks good. They are a little concerned about her arm because it is a little cold and her pulse is a little weak. As with everything, they will keep an eye on it. I know more about the body, how it works, problems that can arise from surgery, vent settings.......uggghh. I really believe a Harvard Medical Degree should be presented to be at the time of discharge. Todays big plans involve sitting with Avery, going to pick up some pictures at Walgreens, and maybe decorating her room a bit (after we change rooms). There is another Knight right beside us now...we do NOT need to have anything get mixed up with that patient, because that WOULD happen to US.
Here is the picture of the edible arrangement I recieved from Kara, isn't it GREAT??!! I would have included a picture from my own camera but I dug into it as soon as it arrived!!
Thursday, September 15, 2011
Avery is out of surgery and settled into her new room in the PICU. Surgery did not take as long as I was anticipating. I was a little worried at first (LIE, very worried) because at every update they kept saying "still looking for the leak"). They finally found it and were able to stitch it up. Lets hope it stays that way. Dr. J said the "hole" really looked like a puncture. I don't know what to think about that. As with everything, I don't know if that makes me feel better or worse. If that is the case, it makes me feel better knowing that there is a real known reason this happened but then it makes me wonder WHO did it. Either way it lessens my faith in PCMH. There is no way to say 100% if that IS what happened so it still leaves me wondering if this will happen agagin. We have someone that we know up on this floor, Rebekah, I can't tell you how nice it is to have someone to chat with (who also knows what you are going through). Makes me feel a little bit "normal". I also got a FANTASTIC edible arrangement from Kara. THANK YOU KARA!! I am eating fruit for dinner and I could not be more excited about that! I still have my room at the Yawkey because I was not sure what the plan was going to be with Kevin and Aiden. Looks like this weekend might not be such a great time for them to come after all. I am going (to try) to enjoy at least one night there, in a real bed, with a TV.
They may lift the paralytic on Tuesday, Avery's birthday. She would still be super super grogggy but it would be nice to see her "awake" on her actual birthday. Then they will do a swallow study 10 days after that (lots of prayers for no leak) and we start the long process of getting her off some meds before we can bring her home.
They may lift the paralytic on Tuesday, Avery's birthday. She would still be super super grogggy but it would be nice to see her "awake" on her actual birthday. Then they will do a swallow study 10 days after that (lots of prayers for no leak) and we start the long process of getting her off some meds before we can bring her home.
It is surgery day. Again. Dr. J thought that after reviewing all Avery's procedures, charts, notes, past history, ect that this leak was only going to close with surgical intervention. They had a last minute cancellation so surgery is today. I had all of 9 hours prior notice. Avery was already sleeping. She will probably be sedated and paralyzed for her birthday. I did not even have time to plan something beforehand. This is going to be a long surgery. It will likely last all day. She will be sedated anywhere from 3 days to 2 weeks. In the past it has always been two weeks. I am so praying for 3 days but I won't know until after surgery is over. I woke up extra early to get in some good snuggles and playtime with Avery. She was so happy. She offered smiles to everyone and was in such a good mood. There were lots of tears as I had to make that walk from her room on the 10th floor down to the familair pre-op, listening to everyone go over the usual plan and risks, having so many people ask if there was anyone with me today. It is so hard to say, "no, it is just me here." And yes I know there are so many people here with me in spirit, but honestly when you have to hand your little girl off to some stranger for an all day surgery that is so risky, you feel alone. All alone. If I had to make a guess I would say that after all the sedation and weaning off the narcotics, we may, God willing, be home by Thanksgiving. We will have seen all four seasons in Boston. Avery's birthday is on September 20th. I hope to have some sort of party for her in October after the sedation is lifted and she is not so drugged up on meds. Kevin and Aiden were supposed to come for a visit on Saturday but I don't know if that will happen now or not. I may go home for a bit if Dr. J decided to keep Avery sedated for the full two weeks. I really miss Aiden and need to spend sometime with him as well.
I came across this article and could really relate to many parts of it. Please take a few minutes to read this. Even though Avery does not have cerebral palsy, many EA moms like myself can relate:
I came across this article and could really relate to many parts of it. Please take a few minutes to read this. Even though Avery does not have cerebral palsy, many EA moms like myself can relate:
What I Would Tell You
I sensed someone watching me as I comforted my daughter after a particularly traumatizing dentist appointment at the Children’s Hospital. I looked up and saw you staring at us from across the waiting lounge. I didn’t pay much attention, as I have grown accustomed to the curious eyes of onlookers. Our daughter was born 7 ½ years ago and after an abrupt lack of oxygen at birth, she changed the course of our lives forever. Perhaps, our lives unfolded exactly as they were meant to — they just didn’t unfold in the way we had imagined or planned.
I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.
I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.
I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.
If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.
I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.
I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.
I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.
I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.
I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.
I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.
I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.
I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.
I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.
I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.
I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.
I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.
I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.
But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.
I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.
Julie Keon
I talked to my daughter, kissed her and hugged her. I was giving her a brief break before putting her through the next traumatic experience of the day ~ the car ride home. Having cerebral palsy is the least of her worries but this condition can turn a car seat into a torture chamber.
I stood up to gather our things, my daughter in my arms, and it was then that I noticed you were holding an infant. It was difficult to know for certain how old she was. I knew immediately, though, that you were one of us. I knew that only recently your life had changed drastically and you sat here in this Children’s Hospital wondering, “How did we get here?” I should have recognized that shocked stare because I once had it, too. And I assume that the man sitting next to you, looking equally tired and shocked, was your husband.
I made my way toward the doors and as I passed you, our eyes met and I smiled at you. You smiled back and for a moment I knew that you knew that I understood.
If I could, I would tell you although you might not believe it right now, you will be okay. I would tell you to dig deep within yourself because you will find the strength and resilience somehow and it will surprise you. I would tell you to honour your feelings and let the tears flow when they need to. You will need the energy for more important things than holding in emotions.
I would tell you that the man sitting next to you might cope differently and he might even want to run the other way. But I would tell you to hang on because he is scared and he really doesn’t want to leave you. I would tell you to look after yourself so that you can care for your daughter. Don’t underestimate the power of good nutrition, exercise, sleep, supplements and an empathetic therapist.
I would tell you that grief will come and it will confuse you because how can something that brings such joy also bring such sadness? I would tell you to let people into your lives to help you. Our children really do require a village to raise them. Access all of the services and resources available. Find someone who can learn how to care for your child so that you can have breaks and so you and your partner can go on dates… even little ones like a twenty minute stroll outside holding hands, sharing wine on the deck or even catching a movie.
I would tell you that you know your child best of all and no matter what you are told by the doctors and other professionals who will be a part of your life, YOU know the answers. You will teach them about your child. At times you will question the validity of your intuition but after a while you will become profoundly aware of how accurate your gut feelings are when it comes to your child.
I would tell you not to be a martyr. Caring for your child will require tremendous focus and unimaginable energy and it can burn you out and make you sick when you least expect it. I would tell you to let your guard down along the way so that you can stay healthy in your mind and spirit.
I would tell you to seek out other mothers like yourself. This is, indeed, the road less travelled and you will feel very alone along the way especially in the company of healthy children and their parents. Yes, you will feel very isolated but know that we are here. Sometimes you have to look a little harder but we are here. You can find us online, in support groups and wandering the halls of the Children’s Hospital.
I would tell you that you will know far too much about the human anatomy, neurology, gastro-enterology, feeding tubes, pharmaceuticals, and so on, than a mother should ever have to know. I would also tell you to do some research to inform yourself but be very careful not to be overwhelmed by the internet and all of the information available to you. Having some trust in what your child’s specialists tell you can be very grounding. Other mothers and fathers of children like ours can be a wealth of information.
I would tell you that this isn’t an easy life. It is tough: there is no doubt about it but you are very capable and the rewards are great. You may never see your child graduate from university, walk down the aisle or give birth to your grandchildren but you will feel pure joy when your child laughs for the first time at the age of 3 years and 8 months. You will celebrate the moment when you connect with your non-verbal child. You will call your spouse at work to tell him that she has gained 4oz. because weight gain is always a struggle with our children.
I would tell you that you will have to witness procedures and surgeries and suffering well beyond what any parent should ever have to bear. But, I would tell you that you will be courageous and comforting because your child will be experiencing far more suffering than any child should ever have to endure.
I would tell you that your life will not resemble the life you had planned. It will be as though you landed in Holland instead of Italy but after some time, you will adjust the dreams you had and this reality will be normal to you. You will dream new dreams.
I would tell you that you might find yourself staring death in the face during close calls. You will be asked to fill out DNR (Do Not Resuscitate) forms and although you might make decisions to not resuscitate in the event of a cardiac arrest, when the moment arises, you will panic to think that it could all come to an end. And I would tell you to not feel guilty in the darkest moments when you pray to God to take your child if it would mean the suffering would end. This might horrify you but know that your love for your child is so great that at times you will believe that death would be a blessing.
I would tell you that others will not get it. They can’t. This is a very unique and complex journey on all levels. We cannot expect anyone to get it. And I would tell you that people — the cashier at the grocery store or your insurance broker or even your hair stylist — will say stupid things like, “God only gives these special kids to special mothers” and “God will only give you what you can handle.” You will nod and smile but eventually you will look them right in the face and tell them that those simple maxims are a bunch of bullshit.
I would tell you that imagining your future will be bittersweet and may involve a Plan A and a Plan B. Plan A will be what you will do if your child outlives the predicted life expectancy set forth by the experts and Plan B will come into play if they do not. You will catch yourself casually discussing your future with the code phrases of Plan A and Plan B.
I would tell you that grief will creep up on you after years have passed and you least expect it like at a wedding when the father and bride have their first dance or when you hear a birth announcement. It will also creep up on you when you see yourself in a new mother who is just beginning this journey.
I would tell you that you will recognize her because she is you from 7 ½ years ago. And you will want to run to her and hug her and tell her that everything will be okay. You will want to save her from the pain and the hardship and the unknown.
But I would tell you that when you find yourself sitting at the Children’s Hospital and you see a new mom and dad who are just starting this journey, you smile at them and walk by as they have their own path to travel and it will be different than yours. It may be longer or shorter. It may be more or less complicated.
I would tell you that her searching eyes are looking for some sign that she will survive this. And you, smiling as you pass, with your child arching all over your shoulder, will let her know that yes, she will survive this and may even thrive.
Julie Keon
Wednesday, September 14, 2011
Avery went and got her picc line on Monday. She was also supposed to get a chest tube put in to help drain the pouch therefore helping this leak to close on its own. Interventional Radiology could not find the pouch and everyone was so hopeful that it meant that the leak had sealed. Yesterday Avery pulled the NE tube out of her nose so we were free to roam around the hospital. It was so nice just to be able to take her outside and into the playroom. Well today was the esophagram to check on the leak. It is still there and Dr. Smithers said he thought it looked to be the same size. Now I am just waiting for Dr. Jennings to get out of surgery and talk to me. I wish I could see the light at the end of this tunnel. I feel like we are never going to be able to leave the hospital. On one hand I want to wait a little bit for surgery (mainly because I would like Avery to not be paralyzed and sedated for her birthday) and on the other I just want them to go ahead and do the surgery and get it over with.
Tuesday, September 13, 2011
Sunday, September 11, 2011
50 Rules for Dads with Daughters
1. Love her mom. Treat her mother with respect, honor, and a big heaping spoonful of public displays of affection. When she grows up, the odds are good she’ll fall in love with and marry someone who treats her much like you treated her mother. Good or bad, that’s just the way it is. I’d prefer good.
2. Always be there. Quality time doesn’t happen without quantity time. Hang out together for no other reason than just to be in each other’s presence. Be genuinely interested in the things that interest her. She needs her dad to be involved in her life at every stage. Don’t just sit idly by while she add years to her… add life to her years.
3. Save the day. She’ll grow up looking for a hero. It might as well be you. She’ll need you to come through for her over and over again throughout her life. Rise to the occasion. Red cape and blue tights optional.
4. Savor every moment you have together. Today she’s crawling around the house in diapers, tomorrow you’re handing her the keys to the car, and before you know it, you’re walking her down the aisle. Some day soon, hanging out with her old man won’t be the bees knees anymore. Life happens pretty fast. You better cherish it while you can.
5. Pray for her. Regularly. Passionately. Continually.
6. Buy her a glove and teach her to throw a baseball. Make her proud to throw like a girl… a girl with a wicked slider.
7. She will fight with her mother. Choose sides wisely.
8. Go ahead. Buy her those pearls.
9. Of course you look silly playing peek-a-boo. You should play anyway.
10. Enjoy the wonder of bath time.
11. There will come a day when she asks for a puppy. Don’t over think it. At least one time in her life, just say, “Yes.”
12. It’s never too early to start teaching her about money. She will still probably suck you dry as a teenager… and on her wedding day.
13. Make pancakes in the shape of her age for breakfast on her birthday. In a pinch, donuts with pink sprinkles and a candle will suffice.
14. Buy her a pair of Chucks as soon as she starts walking. She won’t always want to wear matching shoes with her old man.
15. Dance with her. Start when she’s a little girl or even when she’s a baby. Don’t wait ‘til her wedding day.
16. Take her fishing. She will probably squirm more than the worm on your hook. That’s OK.
17. Learn to say no. She may pitch a fit today, but someday you’ll both be glad you stuck to your guns.
18. Tell her she’s beautiful. Say it over and over again. Someday an animated movie or “beauty” magazine will try to convince her otherwise.
19. Teach her to change a flat. A tire without air need not be a major panic inducing event in her life. She’ll still call you crying the first time it happens.
20. Take her camping. Immerse her in the great outdoors. Watch her eyes fill with wonder the first time she sees the beauty of wide open spaces. Leave the iPod at home.
21. Let her hold the wheel. She will always remember when daddy let her drive.
22. She’s as smart as any boy. Make sure she knows that.
23. When she learns to give kisses, she will want to plant them all over your face. Encourage this practice.
24. Knowing how to eat sunflower seeds correctly will not help her get into a good college. Teach her anyway.
25. Letting her ride on your shoulders is pure magic. Do it now while you have a strong back and she’s still tiny.
26. It is in her nature to make music. It’s up to you to introduce her to the joy of socks on a wooden floor.
27. If there’s a splash park near your home, take her there often. She will be drawn to the water like a duck to a puddle.
28. She will eagerly await your return home from work in the evenings. Don’t be late.
29. If her mom enrolls her in swim lessons, make sure you get in the pool too. Don’t be intimidated if there are no other dads there. It’s their loss.
30. Never miss her birthday. In ten years she won’t remember the present you gave her. She will remember if you weren’t there.
31. Teach her to roller skate. Watch her confidence soar.
32. Let her roll around in the grass. It’s good for her soul. It’s not bad for yours either.
33. Take her swimsuit shopping. Don’t be afraid to veto some of her choices, but resist the urge to buy her full-body beach pajamas.
34. Somewhere between the time she turns three and her sixth birthday, the odds are good that she will ask you to marry her. Let her down gently.
35. She’ll probably want to crawl in bed with you after a nightmare. This is a good thing.
36. Few things in life are more comforting to a crying little girl than her father’s hand. Never forget this.
37. Introduce her to the swings at your local park. She’ll squeal for you to push her higher and faster. Her definition of “higher and faster” is probably not the same as yours. Keep that in mind.
38. When she’s a bit older, your definition of higher and faster will be a lot closer to hers. When that day comes, go ahead… give it all you’ve got.
39. Holding her upside down by the legs while she giggles and screams uncontrollably is great for your biceps. WARNING: She has no concept of muscle fatigue.
40. She might ask you to buy her a pony on her birthday. Unless you live on a farm, do not buy her a pony on her birthday. It’s OK to rent one though.
41. Take it easy on the presents for her birthday and Christmas. Instead, give her the gift of experiences you can share together.
42. Let her know she can always come home. No matter what.
43. Remember, just like a butterfly, she too will spread her wings and fly some day. Enjoy her caterpillar years.
44. Write her a handwritten letter every year on her birthday. Give them to her when she goes off to college, becomes a mother herself, or when you think she needs them most.
45. Learn to trust her. Gradually give her more freedom as she gets older. She will rise to the expectations you set for her.
46. When in doubt, trust your heart. She already does.
47. When your teenage daughter is upset, learning when to engage and when to back off will add years to YOUR life. If you succeed in doing this, tell me how.
48. Ice cream covers over a multitude of sins. Know her favorite flavor.
49. This day is coming soon. There’s nothing you can do to be ready for it. The sooner you accept this fact, the easier it will be.
50. Today she’s walking down the driveway to get on the school bus. Tomorrow she’s going off to college. Don’t blink.
2. Always be there. Quality time doesn’t happen without quantity time. Hang out together for no other reason than just to be in each other’s presence. Be genuinely interested in the things that interest her. She needs her dad to be involved in her life at every stage. Don’t just sit idly by while she add years to her… add life to her years.
5. Pray for her. Regularly. Passionately. Continually.
9. Of course you look silly playing peek-a-boo. You should play anyway.
11. There will come a day when she asks for a puppy. Don’t over think it. At least one time in her life, just say, “Yes.”
12. It’s never too early to start teaching her about money. She will still probably suck you dry as a teenager… and on her wedding day.
17. Learn to say no. She may pitch a fit today, but someday you’ll both be glad you stuck to your guns.
18. Tell her she’s beautiful. Say it over and over again. Someday an animated movie or “beauty” magazine will try to convince her otherwise.
22. She’s as smart as any boy. Make sure she knows that.
23. When she learns to give kisses, she will want to plant them all over your face. Encourage this practice.
25. Letting her ride on your shoulders is pure magic. Do it now while you have a strong back and she’s still tiny.
30. Never miss her birthday. In ten years she won’t remember the present you gave her. She will remember if you weren’t there.
33. Take her swimsuit shopping. Don’t be afraid to veto some of her choices, but resist the urge to buy her full-body beach pajamas.
37. Introduce her to the swings at your local park. She’ll squeal for you to push her higher and faster. Her definition of “higher and faster” is probably not the same as yours. Keep that in mind.
38. When she’s a bit older, your definition of higher and faster will be a lot closer to hers. When that day comes, go ahead… give it all you’ve got.
40. She might ask you to buy her a pony on her birthday. Unless you live on a farm, do not buy her a pony on her birthday. It’s OK to rent one though.
41. Take it easy on the presents for her birthday and Christmas. Instead, give her the gift of experiences you can share together.
44. Write her a handwritten letter every year on her birthday. Give them to her when she goes off to college, becomes a mother herself, or when you think she needs them most.
46. When in doubt, trust your heart. She already does.
48. Ice cream covers over a multitude of sins. Know her favorite flavor.
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