and I can't believe I haven't written anything! Life has a way of becoming a whirlwind that scoops you up, twists you around, then dumps you on the ground when you least expect it!
Having started to revisit our experiences with Charlotte, I didn't realize I was going to release years of pent up emotions and stress. Everyone told me how well I was handling it, how strong I was...I thought I was handling it well too. Crying when I needed too, venting when I needed too, yelling when I needed too...but I guess it wasn't enough. I suppose, if I hadn't repressed some of the emotions and stress, I wouldn't have survived it. The human spirit/mind is an amazing thing. Now that Charlotte is healthy, happy and safe, I am now able to relax and let things go. Starting to revisit and write this blog pulled out the cork! The emotional spillage is starting to affect me physically, and not in a good way.
If I'm being honest, the last few years I have been in a lumpy state. Not wanting to do anything above and beyond just surviving. Knowing that I have to cook and do laundry, do things for the kids, for myself. But I've just been existing, not living. I may be depressed, I may be lazy, but I'm not being my true authentic self. I think it's because I just don't have the energy. I know in my head I have to tackle the projects that need doing, go to bed earlier and get a good nights sleep, eat better...but I don't have the energy. I'm using all my energy to help others, that I'm not leaving anything for me.
It all came to a head in the most inappropriate time. It was the day of the girls Spring Show. The big Ballet show put on every year by the dance school. Charlotte was excited to be a blue bird, Lindsay was so happy to be a mini-lead for an adorable bunch of 3 year olds for the first time ever, and getting to perform her first piece as a Vimy Student. The growth she has shown since starting the Professional Dance Program, and was excited to be dancing in both shows. As the president of the parents committee, I was helping all day, coordinating volunteers and making sure everything was going well, AND making sure my girls were ready and, with Gord's help, there on time. I was running around all day, making sure I drank lots of water and eating when I needed too. I thrive on stuff like this and really enjoy it. But, I was happy that I was going to be able to sit and watch the evening performance that Lindsay was in.
I was happily seated in the audience, getting to watch the show. The lights dimmed and the show began. I noticed that my heart started to race and I had a super hot flush come over my entire body. Then, as I kept checking my pulse, I started having slight pains in my chest, arms and shoulder. Nausea started and my heart rate kept increasing. "This can't be a heart attack" I thought as I was relaxed and calm. "Could it be anxiety?" No, cause I'm relaxed and calm. "But I've never felt like this before, and in women of my age, heart attacks can be identical to heart attacks." Well, I left the show at a perfect opportunity, then went to the green room. I phoned 911 and Health Link and my friend took me to the hospital.
I don't want to relive that night anymore but to say that it wasn't a heart attack, but it scared me silly. I am currently wearing a 2 week Heart Event Monitor and have an appointment for an Echo and meeting with a cardiologist on April 19. I think it was an anxiety/stress release, as my astute friend pointed out, but I don't want to rule out anything heart related, as I have had heart palpitations in the past. With our family history its best to not take anything lightly.
It's amazing what the human body is capable off. What we can endure. But we can't be blind to what stress and emotions can do to us. It is so important to let our feelings out, whatever way feels comfortable. And not to worry what others think of us.
I am currently reading "Carly's Voice". A book written by Arthur Fleischmann, Carly's father. She is a girl with Severe Autism who is now an advocate for those with Autism. She has found her voice through the wonders of technology. She is showing us that they are in their, they just struggle to come out. I am reading things with tears streaming down my face as I relate to their families struggles. Yes Charlotte is verbal, yes she can communicate, yes she is relatively normal. But she's not. Her brain is wired differently and we struggle, well I struggle, everyday to figure out what is best for her. If I'm giving here everything she needs or failing miserably. Once I am done the book, I think I will have to write them a thank you note for sharing such a personal story with the world. This book is touching me in ways I never though possible and letting more of the emotions to spill out through my tears. I think it is a MUST READ for everyone! "Carly's Voice"
Happy Easter to all
Tiffany
Sunday, April 8, 2012
Tuesday, January 24, 2012
Media blitz at the Stollery ER Expansion Opening
WOW, what a crazy day yesterday was. I figured there would be media at the Stollery ER Opening, but had no idea it would be so crazy. How do people in the public eye do it? All those cameras, people asking you questions from every direction, requests for interviews coming one after the other. I'll say it again WOW! I must also say, meeting the premier was a crazy experience!
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| Charlotte yawning hee hee |
We were asked to be a part of this extremely important event because I had the privilege of being apart of the group that helped redesign the waiting area and triage for the new ER. I am apart of the Family Centred Care Network at the hospital, and, being a designer by trade, have an added bonus of being able to understand two sides of the table: I speak architect and family. It was a beautiful experience, having all sides work together to come up with something that will work for our families and help make the scary experience of coming to the hospital a little less scary. Between the architects (Dialog), the staff at all levels (Management and front line) and myself (with input from the Network and our working group of 2 other family members) I think we created a space that all of Edmonton, and Canada, can be proud.
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| Goofing around in on of the procedure rooms |
In public, I'm pretty good at telling our story without getting too emotional. I can get misty, maybe a frog in my throat, but I never cry. I'm talking the ugly cry. Well today, I did. All it takes is Charlotte, without any prompting, amidst all those flashbulbs and questions, to sit up on the bed in one of the new treatment rooms in the ER, put hand to heart and say "I want to thank the Stollery, because without the hospital, I wouldn't be here"...
CTV Edmonton piece
http://edmonton.ctv.ca/servlet/an/local/CTVNews/20120123/edm_emergency_120123/20120123/?hub=EdmontonHome
Global Edmonton piece
CBC Edmonton piece
http://www.cbc.ca/news/canada/edmonton/story/2012/01/23/edmonton-stollery-emergency-department.html
Edmonton Sun
http://www.edmontonsun.com/videos/video/1410217068001
Edmonton Journal
Story & Video (click tabs to see): http://www.edmontonjournal.com/health/Stollery+expansion+unveiled+today/6037193/story.html
Tuesday, January 17, 2012
Peeling back the layers of the biggest onion “depressing” my soul – Part 2
Warning: This is part 2 of a series of 4-6 posts that are going to be long, emotional and potentially be laced with swear words, as I’m looking at a really tough time in my life. It’s hard, but I feel I need to do it…Here is Part 2 …
We THOUGHT we had prepared for the worst, but had no idea how bad “the worst” could get…
So 2 weeks after we came home, we were preparing to go back into the hospital – December 17, 2002. Charlotte was going to have her first surgery and we should be home in time for Christmas. Like I said at the end of Part 1, Charlotte had other plans.
The day before her surgery was scheduled we went into the pre-admission clinic to find out our surgery time, talk with the anesthesiologist and get all our instructions. We even spoke with the chief doctor in charge of the PICU. He was concerned about her breathing so suggested we do a Bronchoscopy as well as the Diaphragmatic plication to check for signs of aspiration. He was worried that she was also swallowing food into her lungs and maybe that was contributing to her very fast breathing. They sent us for blood work, but the lab didn’t want to take it as her oxygen tank ran out and they didn’t want to have any issues. They assured me they would take some before the surgery and it would be fine. We went home to prepare for our early call and try and get a good nights sleep.
We got up early that morning and Gord, Charlotte and I drove into the hospital. It was pitch black outside and I remember feeling so nervous. I knew she was in excellent hands, but you should never have to be taking your child into the hospital for surgery. She was in good sprits, smiling through her big bright smile, even with the tube taped to her cheek. When we arrived, they put her in the little green hospital gown and we got to carry down to the OR when our names were called. I remember talking to her surgeon, with his dark brown hair and sexy voice (even in crisis I’m not blind or dead), asking our last few questions and then handing her off. He explained that she would be taken to PICU after her surgery because they were a little concerned about her breathing and just wanted to take that extra precaution. After I handed her off (which is one of THE WORST FEELINGS in the world), Gord and I settled in for the long wait.
We had a tour of the PICU and settled in to wait. When they brought her by and into the unit we weren’t even sure it was Charlotte. There were so many tubes and machines. Of course we had to wait until they got her settled to be able to go into the unit and the entire time it felt as thought my heart was in my throat. When they let us into the unit I wasn’t truly prepared for what I saw, my sweet little girl surrounded by tubes and machines. Hard to look at but I had to document everything and was encouraged to take pictures. I strongly recommend this, as, while difficult to look back on, we shouldn’t forget the hard times but accept them and move on. These pictures are forever seared into my memory, and it’s easier to let them go from your mind when you are able to actually hold them. The surgeon told us that the surgery went well and that there were some signs that she was aspirating (swallowing into her lungs), and that they noticed a 4:1 shunt. A what?!? Basically, 4 times the amount of blood was going to her lungs. Hmmmmm… Anyway, they were a little concerned about her breathing but tried to remove her breathing tub – extubate her. She seemed to do well, but the RT’s thought she was breathing fast. I said that was normal for her. They thought she was struggling so they tried c-pap. It worked for a while but then alarms started to go off and people started coming in. They told me to step back as they had to re-intubate her as her lung had collapsed. Watching a bunch of medical professionals putting a tube down your baby’s throat, not something I recommend. By this time I was by myself as Gord had to go home to be with Lindsay. The doctors offered a parent room to me so I could stay close that night.
The next few weeks were a true roller coaster. We tried to extubate her again, and it failed and the doctors were perplexed as to why. Her chest x-rays showed “wet” lungs and they didn’t know the cause. Again, most of the doctors around us were concerned about her heart and thought that this was some of the cause, but Cardiology still insisted that it had to be something else. It did get to the point where I trusted the staff and didn’t feel the need to stay at the hospital; thankfully we were only a 20-minute drive away. I started going to the hospital early in the morning and coming home for supper. Sort of like a job. Because she was so young, Charlotte had to be knocked out on drugs most of the time, with her hands secured, so she wouldn’t pull out the tubing. The doctors suggested a lung biopsy to see what was going on with her lungs, and a Cardiac catheterization, to get a better picture of the ASD.
Of course, by this time, we had to accept the fact that Charlotte wasn’t going to spend her first Christmas at home. The lung biopsy was scheduled for Christmas Eve, and the Cath for early in the New Year. I worked hard at getting Christmas ready when I had the time, and settling into a new normal. The doctors were very helpful and always there to answer questions I had. I started listening more and more to my gut instincts as I noticed I was right about things more often then not when it came to Charlotte and how she would react to things. I stood my ground insisting that Charlotte still get breast milk at whatever mixture we could and became known as the breast milk Nazi. God help you if you spilt any. I worked hard for that milk and wanted every drop to get into Charlotte’s stomach. Her feeding tube was changed to an NJ tube that goes past her stomach and into the small bowel, to help reduce the reflux.
The lung biopsy was successful and the doctor said her lung looked good. It would take a while for the sample to be reviewed by a pathologist. Christmas was as good as it could have been with one child in hospital. Lindsay was thrilled that Santa visited Charlotte in PICU (we have a polaroid as proof) and that he left her another special present at the end of Charlotte’s bed. After Christmas we tried to extubate Charlotte again. It seemed to work. The only problem was she was showing signs of morphine withdrawal. Shaking, foaming at the mouth – not pretty. The doctors slowed down the morphine wean and we got ready to move to the floor, but on ICE – an intermediate care environment on a regular unit - 4 patients in one room with 2 nurses in the room all the time. We were all excited because this was one step closer to going home. It turned into a hair closer as charlotte only lasted on the ward for about 6 hours. She was successfully taken upstairs and Grandma came with Lindsay to visit. Grandma said she’d stay so I could take Lindsay home. Because there would be a nurse in the room with Charlotte the entire time, I decided to stay home. Then about 2 hours after I got home, I got a call from Grandma telling me they had to call a code blue on her and she was re-intubated and taken down to PICU. A flood of tears and nausea came over me, as I had to tell Gord what had happened and rush back to the hospital. He decided to stay with Lindsay, as we didn’t have anyone to watch her. I spent the night at the hospital again as the doctors tried to figure out what had gone wrong. She was working way to hard to breath, causing her lungs to collapse. New Years Eve was not a celebration that year. Charlotte was back in PICU and that night one of the young ladies we had gotten to know really well in our first 3 week stay, passed away. It’s amazing how many tears you can shed. You think you’ve cried them all out and your body finds a way to make more.
Charlotte had her Cardiac Cath on the 2nd of January 2003, and it showed that the ASD was larger than originally thought when looking at the echo’s, but the pressures seemed within normal range, although on the high side. The docs said that if she weren’t able to be successfully extubated, they would consider fixing her heart sooner. They usually don’t have to operate on kids with ASD’s until they are around age 5, allowing them to grow and get bigger. Well we were able to extubate her, with a slower morphine wean, and a whole lot of luck and were transferred, to the ward again, on Jan 5, 2003.
**Before I go any further into the story, I wanted to say that this was the time that I made some AMAZING friends during this journey. Friends that I know I wouldn’t have been able to get through this without. They have become my rocks and those that can understand 100% what it was like for me and my family to go and continue to go, on this adventure. I have refrained from using names other than those in my immediate family out of respect, but I think you know who you are – KC, SW, SE – You will be my family FOREVER!**
It was nice to be up on the ward, seeing kids that were not as sick, able to hold Charlotte more and play with her. She was more alert and started smiling again. But the next month wasn’t a walk in the park. She was originally on ICE, then moved to a regular room. Our first day in a dual room and she coughed out her Central Line – blood everywhere! Thankfully she was done her morphine wean and it was scheduled to come out that day. I guess she really wanted that thing out of her neck. But we weren’t in that room for long. I had left to go pick Lindsay up and bring her to the hospital for a visit. We walk into the unit and there is a whole bunch of people in the hallway outside Charlotte’s room. My heart sank. One of the nurses took Lindsay to the “space ship” so an RT could explain to me that Charlotte de-sated (oxygen levels dropped into the 60s, should be above 93) again, but she didn’t need to be re-intubated. But they have moved her to ICE. Talk about a roller coaster! We were put into the bed by the window, which was nice, but I knew that this was one of the beds that our friend had been in. Often times I would catch Charlotte looking up at the ceiling above her bed and get a very intent look in those eyes of hers and then smile. Hmmmm…
One of my most vivid memories came one day when I was down in the cafeteria having lunch in the hospital cafeteria with some of my friends I had made while in hospital. We were having a great time as all our little kidlets were stable and we were able to get a much-needed break. Then the dreaded code bells went off. It’s this sound that comes over the PA system that, to this day, gives me the chills. We all froze, then the dreaded announcement. “Pediatric Code Blue- 4C4, Pediatric Code Blue, 4C4”. We all bolted, I ran up the stairs to the 2nd floor and nearly had a code blue myself, then went to the elevator. I joined my friends on the elevator and we were all looking at each other with panic. It could have been any of the kids. No talking, just a mother’s fear in each of our eyes. A very powerful expression I can tell you. When those doors opened, I was the first out the gate, running to the unit…Nurses saying “It’s not Charlotte, she’s fine. It’s not Charlotte.” All at once you’re hit with conflicting emotions, pure joy that it’s not your own child, and pure sadness, because you know the family & the child in crisis. Thankfully, the child survived, but I will never forget that moment. As I’m typing this the scenes are playing in my head like an old 8mm film reel, no sound, but I can feel every emotion. Not as strong, but enough to make these posts so extra hard to write.
The problem was, Charlotte wasn’t getting any better. She still wasn’t gaining much weight, and she seemed to be getting more and more dependent on the oxygen. We even had to change it from the kind that just blows in your direction, to the nasal prongs. Our pediatrician was at a loss, we even switched to more volume, less caloric, pure breast milk feeds because I had an instinct that she would do better with that. We didn’t have enough time to truly test that theory because she went in for another major surgery. Our pediatrician felt she was going into the early stages of congestive heart failure and that her heart needed to be fixed NOW. She presented our case to the Cardiac Grand Rounds – all the cardiologists and cardiac surgeons from The Stollery and a few other centers in Western Canada who meet via video conferencing. It was decided that they would fix her heart under the condition that they don’t think it’s the cause of her breathing difficulties, and it may be hard to wean her off the ventilator again. Gord and I both felt we had to do something, and with the encouragement of our pediatrician, we said yes to the surgery. Grand Rounds was the Tuesday, her surgery was that Friday.
I slept in a lazy-boy chair the night before, in preparation for the next morning as she was first case. Gord said he’d get there before she went into surgery. I remember the nurses bathing her and getting her ready, putting her in a clean little green nighty and walking beside her stretcher down to the OR. Both Gord and I gowning up to go into the waiting bay with her, then the nurse coming out to wheel her away. The surgery took a little longer than we were told but we weren’t too panicked. When the surgeon came to tell us about how it went, while she was getting all set up in PICU, he said the hole was a lot bigger than even the Cath showed, about the size of a loonie – enormous considering your heart is the size of your fist. She was an 8lb baby! He also said he managed to repair it by sewing it together, not graft or plastic disc was required.
This time we weren’t as shocked when we went in to see her as we had seen it before. She had one of the nurses we had gotten to know during her previous PICU stay and knew she was in good hands. The PICU docs said they were going to be a little cautious in extubating her as her lungs still looked wet and with her prior history they wanted to be sure. We agreed. She looked healthier than the last time she had had surgery and I felt a calm like, things will get better now.
We also knew the night nurse that was taking care of Charlotte and she was very stable, so the nurses encouraged us to go home and get a good nights rest, maybe even go on a date. We did, we went to see “The Lord of the Rings – Two Towers” As the previews started, Gord leaned over to me and said “Charlotte just had open heart surgery this morning. Should we really be here?” and I replied “If it was her first surgery, then yes it would be weird, but we know she’s in the best place, in the best hands and we have our phones. We’ll call as soon as the movie is done.” We really enjoyed the movie and had a great night, all things considered. It was a good thing too as all hell was going to break lose, and we had no idea what was coming.
Stay tuned for “Peeling back the layers of the biggest onion “depressing” my soul - Part 3”
Monday, January 16, 2012
What's happening in society and schools today is maddening!
I have to take a break in my 4 part series to post these thoughts. I just watched Anderson and his show today he had cast members from Toddlers & Tiaras and a BRAVE young girl and her mother, and I have to say a few words about it.
I’m not going to get into Toddler’s & Tiaras and what I think, because I am not going to waste my time and energy on this subject. Depending on your audience, talking about this and expressing your views can be like flogging a dead horse. What I do want to talk about is the young girl and her mother.
This young girl, I believe she is 14 (missed that part) was BRUTALLY ATTACKED in her Biology class, during an exam, by at least 2 other girls. Her attackers accused her of making a comment about one of them, and when she said she wasn’t talking about them, and didn’t say it, they pounced. The video is horrific, brutal and it took 7 MINUTES FOR SOMEONE TO STOP THE FIGHT! WHAT?!?!?!? There are so many things to say about this.
- Why did it take 7 minutes for someone to step in? Well you could ask why a fellow student videotaped it and didn’t stop it. He said he feels so guilty about it and would gladly take the 2 days suspension for stepping in and stopping the fight
- Why would you get suspended for stopping a fight? That makes absolutely no sense at all. Can someone please explain it to me?
- Apparently there are panic buttons in the classrooms and the teacher pushed it. The Security Guards came but they needed to wait for back up as it took a few people to get these girls off of her. Why do schools need security guards? Isn’t this sending the wrong kind of message to the students of the school. I don’t remember having security guards at my school.
- Other than pushing the panic button, why didn’t the teacher do anything? Try to step in, get some of the bigger boys in the class to help, go get another teacher from an adjacent classroom? Are we that afraid of getting sued for some reason that we forget to do the right thing? Are we so concerned about ourselves that we can’t step in and help a 14 year old from getting viciously attacked by more than one other person?
- Why did those girls feel the need to be so violent? They didn’t know this girl? What is going on in their lives for them to act this way. This makes me very sad.
This young girl is so brave because she has gone back to her school to show people that she is strong and not going to let this bring her down. Also she is speaking publicly about it with her mother’s support and guidance. I applaud this young woman and her mother for being strong and setting a good example for not hiding, but sickened by the fact it happened at all and wasn’t stopped sooner. This just another example that society and the education in North America are broken and need to be fixed.
Rant over, thanks for reading
Tiffany
Saturday, January 14, 2012
Peeling back the layers of the biggest onion “depressing” my soul – Part 1
Warning: This next series of posts (4-6) are going to be long, emotional and potentially be laced with swear words, as I’m looking at a really tough time in my life. It’s hard, but I feel I need to do it…Here is Part 1 of 4/5/6…
“You don’t know how strong you are until strong is your only choice” Unknown
Throughout the past 10 years, a lot of people have asked me “How can you be so strong?” or have said, “You’re so strong”. My stock answer is the quote above. I don’t know where I heard it but it makes a lot of sense and seems to stop the questions. The truth is, I don’t fucking know. I have been surprised by how strong I am and what I have, and we as a family have gone through. Sometimes, the strength is a front for how completely lost I feel inside, to cover the fact that I’m falling apart and have NO IDEA what I’m doing; other times it is true strength. Where it comes from…some would say it comes from God, others may say I was born with it or it comes from nature. Wherever it comes from I’m glad for it because I surely wouldn’t be here if I didn’t have it. (FYI: I DON’T want to hear, “God only gives to those that can handle it” because I would choose to not fucking be dealt this hand, thank you very much! It is one of the WORST things you can say to someone going through this, especially if not a religious person)
Some of you know, but many won’t know, what life has been like for me, and the Keiller family, these past 10 years. Our daughter Charlotte Jean was born on July 9, 2002 at 2 in the morning. She is a true light in our lives, so full of energy and a spirit that is undeniable. She is an old soul whose hugs have the power to make you feel better, and a presence that makes people around her happy. But her life hasn’t been easy. Buckle in, cause this is going to be a long one!
I had a relatively normal pregnancy and her birth was fairly routine, but the cord was wrapped around her neck 3 times. She cried right away but was smaller than expected 5lbs 15 oz. and had some lesions on her scalp. They took her away and checked her out. The doctors told us that the lesions were Aplasia Cutis Congenita and that they usually come with a severe form of Down Syndrome or heart conditions but she checked out fine for both. They did an MRI of her head the day after she was born and everything seemed to appear normal. Basically she had extra soft spots on her head, one near the crown and one at the back of her head, all along the midline. But these soft spots didn’t have scalp over them. They scabbed over, the skull grew in, and she has bald spots where the lesions used to be.
But the next 4 months were not normal. She had a really hard time gaining weight, we’d go to the doctor and she had lost weight, then back in 2 weeks and she had gained, we went on vacation, the doctor went on vacation…it was a roller coaster ride. My instincts were telling me something was wrong but I couldn’t figure it out, and was too scared to listen to the little whispers. We tried all different ways to get her to eat more, bottles, little tubes attached to my breast to get more milk while breast feeding, formula, mixes…nothing worked. All she wanted was my breast but didn’t feed long enough to get what she needed. Other than weight, she was hitting all her milestones: holding up her head, pulling up to standing, smiling, laughing. I thought we had hit the jackpot because she slept through the night, but it turns out it wasn’t something to be celebrated.
Finally our family doctor sent us to the original pediatrician that saw her at birth. She said that Charlotte was “Failure to Thrive” and needed to be admitted to hospital for tube feeding immediately. I was floored. I felt like I was a failure and my life started to spin out of control. I managed to get the Doctor to agree to admit Charlotte in the morning as I was not in a calm state of mind and needed to arrange childcare for Lindsay who was 3 at the time. She was admitted to a local area hospital the next day (Nov 6, 2002) and the journey began. She responded well to being fed continuously through the tube (an NG or Nasal gastric tube. A thin plastic tubing that is placed through the nose down the throat and into the stomach. It is then taped to the babies face), as well as still breast-feeding. After 24 hours they wanted us to try adding a bottle, but she did not do well with that. She fought it and worked herself into such a tizzy that she vomited. Our original pediatrician had to go away to a conference so her colleague looked in on us that Friday. He thought Charlotte was breathing funny (I did too – another whisper I didn’t further investigate - but everyone I asked said it was normal for babies. Yeah, NO!), so he ordered a chest x-ray and a skull ultrasound to recheck her brain. We also met with a Geneticist to start the process of genetic testing. The day was full of tests and the interview with the Geneticist, so it went by quickly. When Gord brought my Mum and Lindsay to the hospital for a visit, Charlotte was sleeping so the nurse said it was a good time to go have dinner. When we came back from the cafeteria, our whole life changed. People in white coats surrounded Charlotte’s crib with concerned looks on their faces and she was hooked up to an ECG machine. That’s when my Mum took Lindsay into the playroom and the pediatrician took Gord and I to the x-ray viewer. The next few sentences literally knocked my knees right out from under me. “Charlotte has an enlarged heart and an unexplained mass in her left chest. We are transferring her to the Stollery Children’s Hospital via ambulance and I have arranged for a cardiologist to meet you in the ER. Do you have any questions?” HELL YES! Thankfully, Gord was holding on to me because I would have fallen to the ground if he hadn’t been.
Gord took my mother and Lindsay home, and I rode in the ambulance with Charlotte. It was only a 20-minute ride but it seemed to take forever. My mind was whirling with so many thoughts, I was scared and felt sick. Gord joined us at the hospital and that was the beginning of our new adventure, but not the kind you voluntarily sign up for. After being admitted to the hospital, Charlotte went through a battery of tests over the 3 weeks we were admitted. Echocardiograms, VQ Scans, CT Scans, Sweat tests, Multiple X-rays, blood tests, urinalysis… the list goes on and on. Plus, she needed to be on oxygen as her blood saturation level (SATS) weren’t in the normal range, so she had a tube blowing air and oxygen in her direction 24/7. She also got a type of flu, which caused her to stop breast-feeding. Her nose was so stuffy that she couldn’t breath while feeding, so she was tube fed 24/7 with a mixture of my breast milk, which I was pumping, and high calorie formula. After she recovered from the flu, she had lost all interest in breast-feeding. I tried and tried, but she wouldn’t have any of it. She seemed to realize that the act of feeding was tiring her out so why do it. All the tests and procedures told us more of Charlotte’s story. Her heart was enlarged because she had a hole between her Atria – or an ASD. The unexplained mass was caused by a left diaphragmatic eventration (the tendon that is between the muscles that make up the diaphragm were paper thin- not a hernia or hole, but very close). Her diaphragm was very weak, and when she breathed, it would suck her organs up into her chest cavity. While her left lung was fully formed, it wasn’t getting the proper blood and oxygen supply. The cardiologist assured us that ASD’s do not cause Failure to Thrive (FTT), and that it must be her breathing using up all her energy, resulting in FTT. Again, I chose to ignore the whisper that this may not be the case, but what did I know. I wasn’t a world renowned Cardiologist?
During this time I lived at the hospital 24/7, with one night away, when the nurses insisted I go home to get a good nights sleep. Lindsay was missing me at home and Gord had to continue working. He had just made partner and was very busy. I only got to see them when they came to visit in the evening or talk to them on the phone. I felt isolated and completely out of my comfort zone. Thankfully my Mother-in-law had retired just after Charlotte was born so she was able to look after Lindsay while Gord was at work. She was an angel on earth, taking care of my very active 3-year-old while on crutches because she needed both her hips replaced. She never complained; did my dishes and made meals for Gord and Lindsay. It was a blessing not to have to worry about what was going on at home, as I already had too much to worry about. I did worry that I was neglecting Lindsay, but didn’t have time to really concentrate on it as Charlotte’s health was first and foremost during that time.
Most of my friends didn’t know how to react or what to say, so they behaved differently around me. Other than my friends I had had since high school, only one friend truly stuck it out with me. The others started to fade into the background, some quicker than others, but I don’t talk to any of them anymore. I found that when people were complaining about their “normal” lives, and their “normal” children, it frustrated me to no end. I started learning a new language, that of the hospital and medical jargon. I started making a new set of friends: nurses, doctors and other parents with critically ill children. They were like life preservers in the sea of uncertainty, medical jargon and guilt. I wouldn’t have made it without them.
I also wouldn’t have made it through without Gord and his calm manner and strength. His ability to hold it together when I was falling apart, showing me that he was a real man, crying in each others arms because we had no idea what was going on. Being an amazing father to Lindsay and keeping the house running smooth with the help of his mother.
After Charlotte was diagnosed with everything and had recovered from the flu, a plan was put in place to go home, with oxygen and the feeding tube, and allow Charlotte to gain weight and get healthier before operating on her heart or fixing her diaphragm. I was trained by the amazing home care staff to put in the feeding tube and how to work the equipment. I went on a type of medication, that while not harming me, had the excellent side effect of increased milk production and purchased my own breast pump so I could keep up with demand. I was determined to provide her with milk, as it was the only thing I felt I had control over. We were set up with home oxygen and got all the supplies we needed. It was an amazing feeling walking out those doors after 3 weeks. I didn’t want to go back for a long time, or at least just for short little stays…Yeah, I didn’t get what I wished for.
We came home and Lindsay was ecstatic to have her sister and her mother home. She was by my side constantly and thankfully was all cuddles for Charlotte and didn’t dismiss her. I settled into a new routine of pumping milk and mixing it with the high calorie formula in the right ratios; working the feeding equipment, dealing with oxygen tanks and all other stuff that you have to do with a 5-month-old baby. But all wasn’t perfect or as it should have been. Charlotte was still not gaining weight and her breathing was worsening. Our new pediatrician that we were assigned to was amazing and we went to go see her. She couldn’t understand why Charlotte wasn’t gaining weight or what was going on with her breathing. She was also sure the heart was playing a role, but because Cardiology was so adamant, we went to see the general surgeon that consulting while we were admitted and it was agreed that we would repair Charlotte’s diaphragm. He wasn’t convinced that it was going to solve all her problems, but thought it could help. He said best case, she’d improve greatly, most probably she would have a slight improvement in her breathing but not sure about her weight gain, and worst case, nothing would change. Charlotte had something entirely different in mind…
Stay tuned for “Peeling back the layers of the biggest onion “depressing” my soul - Part 2”
Sunday, January 8, 2012
What makes me a Super Mom Part deux
As I was folding laundry, yes I may not clean, but I do laundry :-), I thought of 3 more very important things that can make you, and makes me, a "Super Mom".
In no particular order...
In no particular order...
- I follow my gut! What I mean by this is I listen to that little voice inside my head, my mother's instinct, that feeling of unease or anxiety that something isn't right or is. What Oprah calls the little whisper. The natural instincts we are born with, but life and society, teach us to ignore. This all started when my youngest daughter was born, and sick. That is a whole other post. One of the latest and most difficult was pulling Charlotte from school. It would have been so easy to leave her in and try to work within the system, but my instincts told me she needed something "radical" for her education and so began our path with unschooling. (I'll post about that some other time too)
- let your kids make their own decisions. How else are they going to learn? The other day I asked Charlotte to get dressed and she came down in a shorts romper. It's winter, not terribly cold, but too cold to go out in what she had picked. My immediate reaction was not one of a "super mom" but one that was easy. "You can't wear that it's too cold" Well we started to get into an argument "WHY?!? IT'S NOT COLD IN THE HOUSE?!" and then my instinct said loud and clear "So what if she wears that?" I took a step back and then said to myself "You're right". I suggested to her, that because she was going out to Grandma's her legs would get pretty cold. How about she put on a pair of sweat pants to go to Grandmas and then when she gets there she can take them off. She immediately said "Great idea" and the argument (tantrum) stopped. If only I had done that in the first place :-)
- be flexible. When you have a child with special needs or medical issues, you learn this pretty fast. But it applies to all kids and all our lives really. You can start the day with a set plan of what you are going to do and how long it will take, but, honestly, when does it ever work out that way when you have kids? It's okay to have a plan of what you want to accomplish, but don't beat yourself up if the entire plan goes to shit. You'll get things done when they need to get done. Being flexible helps you let go of A LOT of anxiety and stress. It won't get rid of it completely, but it will help.
These are, I think, 3 of the main points to being a "Super Mom". It took me awhile to get there, and I don't always do it, but I try to most of the time.
Thanks again for reading,
Tiffany
What makes me a "Super Mom"
What makes me a Super Mom you ask. Well, its not because I'm perfect. When people talk of supermoms, you think of someone who is always perfectly coifed, has perfect children, bakes, sews, and is well, perfect. I personally don't think these people exist. I also believe it is detrimental to our society and our health to try and be these so called "supermoms". My life has shown that there is no such thing as perfect or normal. Everyone has flaws and everyone has quirks and differences. That's what make us human and what makes us, US.
So, what do I think makes a Super Mom? A Super Mom...
So, what do I think makes a Super Mom? A Super Mom...
- embraces her flaws. I don't like to clean, and to be honest, I'm not very good at it. What I'm talking about is toilets, mopping, that kind of cleaning. I don't mind doing laundry, vacuuming, tidying up, organizing, but I hate doing all the other stuff. So, while I tried to do it all, I can't. So, I have someone come into my house every two weeks to do a good clean of my bathrooms, kitchen and floors.
- admits when she's wrong. If I've yelled at my kids because I'm cranky or something is bothering me, I will apologize once I've calmed down. "I'm sorry I yelled at you. There was no need for that. I am just really frustrated and tired and I took it out on you. Can you forgive me?"
- doesn't take things personally. If my daughter says she hates me, I don't take it personally. She's almost a teenager and you never know the kind of reaction you are going to get when you ask her something. You could get the happy response, indifferent response, or angry response. It's not my fault. It's her hormones!
- takes care of herself. When I need to get away, I do. Even if it's just locking myself in the bathroom with my phone to play a game of Soduku for five minutes. If I don't take care of myself, how can I take care of my children?
- listens. This is a hard one. It's so hard to listen to our kids without jumping in and trying to fix things. I try to listen to what my kids say, not just hear their words, but listen. I also give them every opportunity to talk to me. If I know something is up and I ask, is there something wrong and my daughter says "nothing". I say "I can tell something is bothering you but if you don't want to talk to me about it now that's okay. When your ready come find me."
- doesn't judge. Just because people, or your children, do something that you don't approve of or wouldn't do yourself, doesn't make it wrong. Unless its abusive in anyway. Try to find out why they do that and talk it through.
- leads by example. How can you expect your children to be polite if your constantly demanding them to do things, or don't use the magic words yourself? How can you punish your kids for swearing if you swear? I admit it, I swear. I try not too, but I'm human. My kids swear sometimes, but they know not too in front of Grandma and Grandpa, or in certain situations. Does it still happen, of course. But we talk about it after and it works for us.
- asks for help. When I feel I'm in over my head or stressed to the max, I ask for help. I don't think it's weak, or a cop out. If I'm drowning, I need someone to save me.
I try to live by the above list, but I am human and don't always succeed. But that makes me human and I'm perfectly fine with that. As long as I try my hardest to be the best me I can be, what more can I ask for.
This is my first blog, and my first post. I am going to use this blog to write about my experiences, share my frustrations and celebrate the successes of my life. In future posts I will share my views on having a child with special needs and unschooling; being a dance mom; raising daughters; and whatever else I feel like writing about. I hope these posts will make you laugh, think, be inspired, and feel supported in your choices.
Thanks for reading!
Tiffany
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