There have been so many unpleasant realities hitting us lately, and it's just a constant reminder that although Avery has been physically healthy for over a year now, the day-to-day continues to challenge us. Very sweet people often tell me, "I don't know how you do this, I'd be a wreck." But it's just something that we do, without thinking, because we love our daughter and this is the set of circumstances we have. It's when I do think about it, on sleepless nights, or during moments in the doctor's office, that it gets hard to bear. Being hit with many realities in a short time, and having time to "think" is trouble, so I often try to focus on the current day, keep moving forward and not get sucked into the trap of thinking of the "what-if's" and the "what-that-other-kid-is-doing." Comparison is my mind's worst enemy, and truly one of the biggest no-no's of being a parent. But we all do it.
We had Avery's annual IEP (individualized education plan) meeting at school a few weeks ago, and if you haven't had the pleasure of participating in one of these, let me tell you, they are quite overwhelming. A team of your child's teachers and therapists, which in Avery's case, consists of around 8 people, get together to discuss their progress, shortcomings and goals. We are so lucky to have an exceptional team helping Avery. So exceptional, that I'm already in tears thinking of the day we have to leave Addams ECSE. But it doesn't matter how wonderful the team is, it is never easy to hear some of the things they have to say. Avery has come so far since last year at this time, but her struggles are ongoing and these meetings remind me that every single day counts in helping her progress. I'm going to break the parenting rules for a minute and "compare" my child to another child. I've been around many four-year-olds, and Avery is nowhere near their level in terms of comprehension, social skills and communication. I'm not saying this because I'm disappointed in her, I'm saying it because it's a reality, and one that many people often do not see outright because Avery isn't always obviously "different-looking." But in most ways, she operates at the same level as a two-year-old. And while we can remind ourselves daily that this is a blessing, and Avery could be in a much worse place, it's still difficult to see a typical 4-year-old girl, speaking to her mom in complex sentences, understanding concepts with no problem, playing house with her friends, and knowing that my 4-year-old cannot do these things yet. Once your child is in a group of their peers at school, it's almost impossible not to measure their progress against the next kid. For example, in addition to the IEP meeting, we were asked several questions and given forms to fill out about Avery. Here are some of the questions:
"Can your child jump over a number of objects in their path without stopping?" No.
"Does your child take off their shirt/shoes/pants without help?" No.
"Does your child look for a toy that is covered at least 2 feet away?" No.
"Does your child show awareness of how others feel by saying things like "he is mad," "you are cranky"? No.
"Does your child like to play alongside other children instead of playing alone?" No.
"When an adult points to something, does your child look where the adult pointed?" No.
And on and on... We answered, "no" more than "yes." It broke my heart. I realize this is a rigid set of questions to evaluate the typical development of a child, but I also see that Lucy is on track for all the questions in her range and even a little beyond. The things that Avery deals with physically have incurred serious delays in comprehension, motor skills and social-emotional progress. And it's so much more apparent and in-our-faces now that Lucy is growing and doing things with no effort. It is definitely okay that Avery is taking longer to learn and do things, and okay that we have to put forth more effort to help her, but every so often, we stop and think about this reality and get a little sad. And that's okay too. So often we hear, "she's doing so well," and that makes us feel great, but many people don't see how difficult and different it really is. There are constant therapies, doctor visits and work at home going into her progress. Avery still needs assistance on basically every task that she completes throughout the day: dressing, going to the potty, walking down the stairs, using a spoon and fork, putting on her shoes, finding toys that she wants, and communicating her needs. And I know a lot of 4-year-olds who do all of those things on their own. It doesn't bother me until I hear about it, or am forced to evaluate her current level. And I'm working on not letting that bother me, but it's easier said than done.
The other big reality bothering me lately is one that's difficult to explain. When people comment on Lucy's gorgeous, big eyes, I am proud and grateful, but I'm also very, very sad. Avery will never have typically "beautiful" eyes. She has eyes that we treasure, love and think are beautiful because they are hers (and we know what they've been through), but to the stranger on the street, or to a boy that she has a crush on someday, they may not be considered "beautiful." And someday, she's going to hear her sister get compliments and feel that sadness that we feel for her now. (Side note: please never feel bad to compliment Lucy's eyes - that is not my intention!)
Similarly, when we're out running errands, and a stranger asks how old she is, and then asks her questions like, "what are you being for Halloween?" and she just stares off into space, it's hard to have to explain why. The expectation is that she would answer a simple question like that. I'm just happy she can answer, "how are you?" And the newest button for me, is the constant comments about her small size. When she was younger, it wasn't so hard, but at 4.5, it seems much more apparent. The people in our close circle - family, friends, Avery's doctors and teachers, all know why Avery is small, and their talking about it is never malicious. But from everyone else, this is a sensitive subject. I think I can speak for every parent, special needs or not, when I say that no one wants to hear the comment; "she's so small!!" You wouldn't tell someone that their child is "so fat," so why would you tell them the opposite? I'm not the type of mom to stop and explain to a total stranger why Avery is so small, so I just have to grit my teeth, say, "yep, she is!" and walk away. All.the.time. Then there's the super fun comments (which usually come from older men in Meijer); "you should start feeding that kid more!" How many times have I wanted to go off on someone in the check-out lane? Too many to count.
We're not totally sure of the cause of Avery's small size, but are confident it's related to her medical issues. People born with Peter's Anomaly are often short statured, so that's a possibility. She also didn't eat properly for the first four months of her life, which is a critical time for gaining weight, so that could carry on for the rest of her life. Regardless, we're on it. We're having her tested for all kinds of things, which included having her poked and 6 tubes of blood drawn, and exposed to yet another x-ray to find out her bone age. We put these off as long as possible, but don't see the issue getting better, and need to rule out something serious. She eats very well, and (knock on wood), hasn't been sick this year, so we know she's healthy overall. So to that stranger on the street who wants to point out the obvious and tell me my daughter is "so tiny," please replace that with "so cute." I know you don't mean harm, but that comment hurts.
Regardless of what others say, and what other kids are doing, our day-to-day work will continue, and I will continue to work on my strength as her mom. Because she needs me to be her rock, and to teach her to take everyone's comments in stride. We are working hard on Avery's tolerance of tasks that she doesn't like to do, like dressing herself, using her fork, coloring with crayons, etc. because we know she can do anything with a lot of practice. The potty training is progressing, slowly, but surely. There are good and bad days, but we're leaps and bounds from the summer in that department. We are teaching her so much that I often want to give her breaks, and do things for her, which is okay once and awhile, but not as often as I have been. It's hard to see your child struggle with anything, even something as simple as using a fork, but I am learning that some struggling is good. I'm also learning patience. A quality that I've never been good at, but a critical one to have. We recently relived Avery's journey for our interview with Children's Hospital (that special is airing on WDIV-4 in Detroit immediately following the Thanksgiving Day parade, and I will share online after as well). It is hard to resurface the pain of events we have endured, but it's a reminder of what we've learned and how far we've come. I was a fragile, sensitive, thin-skinned mom four years ago, but now, I'm much tougher and more experienced, but I'll never be immune to all of the pain.
As always, we appreciate everyone's thoughts, prayers and support. Especially the support of the other special needs parents who walk in our shoes and cry the same tears. We cannot do this without you!
Thursday, October 30, 2014
Wednesday, October 1, 2014
Auntie Kathy
One thing that we've been sure of throughout our journey with Avery is that we have an amazing support system of family and friends helping us through it. We are so grateful for this and never take it for granted.
About two weeks ago, we got a phone call from one of our biggest supporters, John's sister, Kathy, that completely took us by surprise. She was calling to tell us that she has breast cancer. I still can't believe it, and every time we've talked since then, I'm thinking the whole time, "are we really having this conversation?!" Hearing Kathy say things like "chemo," and "mastectomy" are too bizarre a concept, and after all I've been through in my own life, I didn't think anything could shock me, but was wrong. You truly never think cancer will strike in your own family, but then it does, and it turns everything upside down. The real shock was the timing of this awful news. Exactly one month before her wedding day. I can't help but think (as I know she is), "it's just not fair." I know these words ran through my head many a time, so I expect she's thinking them too, as she's entitled to. There is never a good time to find out you have cancer, but Kathy has waited a long time to meet her Prince Charming, and has spent this whole year planning a beautiful event to celebrate it, so being blindsided with this news RIGHT NOW really sucks. Thoughts of seating charts, wedding hair and make-up have shifted to thoughts of surgery and scars and cancer treatment. These should be the happiest days of her life, and I'm sorry that some of that joy has been taken from her, as she inevitably is scared for what's ahead of her. She's walked the Komen 3-Day for six years, raising money and awareness for a cancer she never imagined she'd one day get. It really isn't fair. But in giving it more thought, I realize she now has a support system from all those walks, and she has the love and support of her fiancé to get her through this, and no matter when she found it out, it would still really suck. While my heart breaks for her and what I can only imagine she's feeling, I know she will face this bravely and beat cancer's butt!
Kathy is no stranger to devastating health news being in our family - her dad has been through several surgeries and health scares, and of course she's been by our side with Avery's issues. But this is her first personal battle, and she knows it's not going to be easy. We, her family, will be behind her all the way, just as she's been for us. I've been lucky enough to get very close with Kathy over the years; she's someone I confide in, and visa versa, she was in my wedding, as I will be in hers. We have been with each other through many big events, both happy and sad, and like every good family, we support each other.
Kathy is no stranger to devastating health news being in our family - her dad has been through several surgeries and health scares, and of course she's been by our side with Avery's issues. But this is her first personal battle, and she knows it's not going to be easy. We, her family, will be behind her all the way, just as she's been for us. I've been lucky enough to get very close with Kathy over the years; she's someone I confide in, and visa versa, she was in my wedding, as I will be in hers. We have been with each other through many big events, both happy and sad, and like every good family, we support each other.
This news has me reflecting back to our early days with Avery, and how Kathy was there for so many of the big, awful, scary moments. She was there for Avery's first surgery to remove her brain cyst at 5 weeks old. Kathy came up with my in-laws and she sat with us in that waiting room and distracted me with any and every subject that wasn't brain surgery. She was there the day our pediatrician told me to take Avery into the ER for a spinal tap for meningitis. She had literally just arrived at our door step to help us out for a few days, and we left her with our dog while we took Avery to the hospital. And I will never forget that she was the only person in the room with me, giving me a hug when I asked the doctor if Avery would pull through that infection, and he said, "I don't know." Since those early days, she's been one of our biggest supporters, spreading awareness about Avery's disorders and helping us with fundraising for Hydrocephalus Association. If she can't be here in person, she sends encouraging notes and texts, and always checks in on updates. If you are ever in a bad situation, no matter how little or well Kathy knows you, she will be there for you. She's just that kind of person. She's always been one of the most thoughtful, generous and caring people I have known, and I know that she will see that all come back to her now that she is the one who needs it.
So this entry is to let her know how much she is loved, appreciated and thought of. Her support over the years has not gone unnoticed, and although it's sad that it takes news like this to really bring to light how much we appreciate someone, it's a good reminder to cherish our loved ones. We are so sorry that you have to battle breast cancer, and although we're not sure what your journey will be like, we are sure of the fact that we are here to support you through it. We will be sending out prayers and happy thoughts as you begin your battle tomorrow, and we will be celebrating huge with you in 18 days when you get married! We love you, Kathy/Auntie Kathy!!
If you would like to follow Kathy's battle with breast cancer, please visit her page at: www.caringbridge.org/visit/kathysfight3
So this entry is to let her know how much she is loved, appreciated and thought of. Her support over the years has not gone unnoticed, and although it's sad that it takes news like this to really bring to light how much we appreciate someone, it's a good reminder to cherish our loved ones. We are so sorry that you have to battle breast cancer, and although we're not sure what your journey will be like, we are sure of the fact that we are here to support you through it. We will be sending out prayers and happy thoughts as you begin your battle tomorrow, and we will be celebrating huge with you in 18 days when you get married! We love you, Kathy/Auntie Kathy!!
If you would like to follow Kathy's battle with breast cancer, please visit her page at: www.caringbridge.org/visit/kathysfight3
Thursday, August 14, 2014
One Year Shunt Anniversary!
We have been lucky enough to celebrate a lot of milestones in 2014 - both of Avery's corneas turned 1 year and she finally started talking. But today marks the most important milestone to date - her shunt was last revised one year ago today. In our little world of Hydrocephalus, that's a really big deal. Avery's shunt malfunctioned twice last year, the first one with many months of sickness leading up to it, and the second time was just shy of 3 months from the first revision. Each time her shunt malfunctions (which means it either plugs up with scar tissue or brain matter, or the valve stops working for some other reason), she gets extremely lethargic, vomits and has a massive headache. This last happened on August 13, 2013, and I got a call from John while I was at work. That was also my last day of work, because I had decided on top of everything else going on at the time, I wasn't about to be absent for another shunt malfunction. It's treated as an emergency when kids with shunts show these symptoms, as pressure from accumulating fluid can cause major damage to the brain, and if left too long, can be permanent or even worse. Avery was so bad last year, that in pre-op, she was basically unresponsive to any physical test. It was terrifying to watch and we were on the edge of our seats waiting for surgery to finally happen the next morning to provide some relief. The other issue with shunt revision surgery is that it's brain surgery. There's no short-cut or way around that. The chance for infection is pretty high, especially in warm summer months, and even if the surgery is successful and you are discharged after a few days, the worry of an infection will haunt you for months (or a year, if you're me). There's an initial hurdle to overcome, which is the shunt making it for three months after it's revised. Statistically, the shunt is most likely to fail again in the first three months, but a failure can happen at any time. So basically, not one single day goes by when we don't worry that this could happen. Believe me, I'm ecstatic that we've reached such a long milestone, especially based on how last year was going, but the worry is constant and never-ending. We still keep a video monitor on Avery's bed and any sign of a cough or weird noise, I'm stiff as a board, holding my breath, hoping it's just nothing. That terrifying sound of your child with hydro vomiting in the middle of the night or first thing in the morning will never leave your memory, and every one of us knows things can turn on a dime.
I was so skeptical that this shunt would last past the three month mark, let alone a whole year. And that's not me being negative, it's because my kid scares me so many times. If you know us (or read this blog), you may recall the persistent stomach-bug masquerading as a shunt malfunction she had from September to October of last fall. It got me each and every time she woke up puking in her bed. "This is it, this time it's her shunt, I just know it..." and then it wasn't, thank God. I kept praying for her to stay healthy just until we brought Lucy home from the hospital, and then I upped it to when Lucy's sleeping through the night... and then it just kept going. Then there's the changes in weather affecting her shunt. If there's an extreme change in barometric pressure, she sometimes gets bad headaches, which make her feel awful. We have watched her go through this for so long, we're pretty in tune to her mannerisms and signs that something's going on. She still doesn't understand how to tell us that she has a headache, so we're really looking forward to when she's able to communicate better.
I was so skeptical that this shunt would last past the three month mark, let alone a whole year. And that's not me being negative, it's because my kid scares me so many times. If you know us (or read this blog), you may recall the persistent stomach-bug masquerading as a shunt malfunction she had from September to October of last fall. It got me each and every time she woke up puking in her bed. "This is it, this time it's her shunt, I just know it..." and then it wasn't, thank God. I kept praying for her to stay healthy just until we brought Lucy home from the hospital, and then I upped it to when Lucy's sleeping through the night... and then it just kept going. Then there's the changes in weather affecting her shunt. If there's an extreme change in barometric pressure, she sometimes gets bad headaches, which make her feel awful. We have watched her go through this for so long, we're pretty in tune to her mannerisms and signs that something's going on. She still doesn't understand how to tell us that she has a headache, so we're really looking forward to when she's able to communicate better.
Avery missed so many days of school in the Winter and Spring of 2013, and this past school year, she hardly missed any. It's absolutely amazing what she was able to achieve without the effects of pressure on her brain or surgeries. She came so far this past year, and even if everything changes tomorrow, I am grateful for the progress she's been able to fit into this year. We've met a lot of other Hydro families via social media or local support groups, and we know that not everyone is fortunate enough to make this milestone. It's a scary, awful disorder and the very reason we fund raise for Hydrocephalus Association is to push for research towards better treatment. I pray that in Avery's lifetime, she won't have to forever rely solely on her delicate shunt to keep her healthy.
So today is like another birthday for my girl - Happy Shunt Anniversary... ice cream for everyone!
So today is like another birthday for my girl - Happy Shunt Anniversary... ice cream for everyone!
Monday, July 28, 2014
Paying it forward
The way we see some silver lining in an otherwise crappy situation is to look for opportunities to help others. Whether they are going through what we have with Avery, or have a child with other special needs, we hope that by sharing our story, being someone to lean on, and getting information out there, we can help others get through terrible times. Hearing from another mom that I've made her feel better, or that we brought something to their attention that they wouldn't have otherwise known, gets me through and makes me feel like we're giving back after receiving so much help from others.
Recently, Children's Hospital of Michigan, where Avery receives the majority of her care, contacted us after reading a "thank you" post I had put on their facebook page. They wanted to share Avery's story on their website so other families searching online may stumble on it and take something away from it. Of course, I jump at any chance to show off Avery's smiling face, but am so happy to do anything we can that may help other families. The article also serves as a public thank you to our amazing doctors; Dr. John Roarty, Dr. Steven Dunn, and Dr. Sandeep Sood, as well as the nursing staff at CHM. They've become part of our family, and have brought Avery to where she is today.
http://www.childrensdmc.org/AveryDevereux
Honestly, it is only recently that I feel confident enough to serve as a dedicated resource to other families regarding these medical conditions, and being a parent of a special needs child. The first 6 months of Avery's life, I was pretty much a recluse - afraid to go online and read something that would scare me, afraid to spend time with others, whose children I compared to Avery, and afraid to answer to the stares and questions of others. Then I progressed into the "anger phase," when I wanted someone, anyone to blame for what was happening to my baby. I turned my back on God, and felt some resentment toward everyone who had a healthy child. Each time one of Avery's conditions landed us all in the hospital, I would become this numb person, so helpless and confused. When things are good for awhile, it's easier to reflect on what you've truly accomplished, and focus on how you can make your mess your message. This past year, Avery's conditions have been stable for the most part, but there is still a daily worry as I watch her struggle to learn things, to communicate, use her limited sight, and keep up with her peers. Despite this, I've really improved my ability to take one day at a time, and not to think too far into the future about the "what-if's." That has allowed me to reach out to many families just starting the journey, and try to do what I can to help. Because not long ago I was in their shoes, and someday, we will be back in a not-so-great place. It's just a fact of this life, and acceptance is the key to getting through it. It won't be easy, and I'm sure I will still be upset and angry, but I will take it as it comes and make sure Avery knows that first and foremost, she is loved.
Although Avery's conditions are a daily battle, we are in a good place today, and if we are not tomorrow, we have an amazing team at CHM to rely on. I call ours a success story in that we weathered many, many storms as a family, remain strong, and have a very happy little girl to show for it. Avery will never let her medical issues hold her back, and we will encourage her to do whatever she wants to do, and to push her limits.
Recently, Children's Hospital of Michigan, where Avery receives the majority of her care, contacted us after reading a "thank you" post I had put on their facebook page. They wanted to share Avery's story on their website so other families searching online may stumble on it and take something away from it. Of course, I jump at any chance to show off Avery's smiling face, but am so happy to do anything we can that may help other families. The article also serves as a public thank you to our amazing doctors; Dr. John Roarty, Dr. Steven Dunn, and Dr. Sandeep Sood, as well as the nursing staff at CHM. They've become part of our family, and have brought Avery to where she is today.
http://www.childrensdmc.org/AveryDevereux
Honestly, it is only recently that I feel confident enough to serve as a dedicated resource to other families regarding these medical conditions, and being a parent of a special needs child. The first 6 months of Avery's life, I was pretty much a recluse - afraid to go online and read something that would scare me, afraid to spend time with others, whose children I compared to Avery, and afraid to answer to the stares and questions of others. Then I progressed into the "anger phase," when I wanted someone, anyone to blame for what was happening to my baby. I turned my back on God, and felt some resentment toward everyone who had a healthy child. Each time one of Avery's conditions landed us all in the hospital, I would become this numb person, so helpless and confused. When things are good for awhile, it's easier to reflect on what you've truly accomplished, and focus on how you can make your mess your message. This past year, Avery's conditions have been stable for the most part, but there is still a daily worry as I watch her struggle to learn things, to communicate, use her limited sight, and keep up with her peers. Despite this, I've really improved my ability to take one day at a time, and not to think too far into the future about the "what-if's." That has allowed me to reach out to many families just starting the journey, and try to do what I can to help. Because not long ago I was in their shoes, and someday, we will be back in a not-so-great place. It's just a fact of this life, and acceptance is the key to getting through it. It won't be easy, and I'm sure I will still be upset and angry, but I will take it as it comes and make sure Avery knows that first and foremost, she is loved.
Although Avery's conditions are a daily battle, we are in a good place today, and if we are not tomorrow, we have an amazing team at CHM to rely on. I call ours a success story in that we weathered many, many storms as a family, remain strong, and have a very happy little girl to show for it. Avery will never let her medical issues hold her back, and we will encourage her to do whatever she wants to do, and to push her limits.
Wednesday, June 4, 2014
Mommy's Turn
It's been six days since I had surgery and I've had a lot of time on my hands to think, so I wanted to document this event, and how it relates to Miss Avery. A little background first. My surgery was to correct severe diastasis (separation of the abdominal walls from pregnancy), as well as a large hernia sac above my belly button, and another umbilical hernia. And I decided to throw on a tubal ligation just in case the other stuff wasn't painful enough. Since I had Avery, I've felt like my organs were being pushed forward, through my abs, and I was precisely right. After learning it was a hernia and diastasis, I tried to do exercises to "flatten" it out, but quickly found out that was not only pointless, but making it worse. The only answer would be surgery, unless I wanted to live with it inevitably getting worse. In many cases, it doesn't require treatment, but mine was pretty bad, and left untreated, could eventually strangulate, and also leave me looking 5 months pregnant for the rest of my life. And my surgeon (who I love, despite his blunt and dry humor while referring to your body) pretty much summed it up when I asked him what stage of diastasis I had and he replied, "you're beyond stages." and "I've seen women with twins who don't look this bad." It was a big decision to make, being that I'm kept very busy by two little girls, John doesn't have a lot of time off, and the recovery is pretty annoying (no lifting for 6 weeks, no driving for 3, etc.). But, thanks to my incredible family, who are taking time out of their lives to help, I could get it out of the way. My biggest worry was Avery having a shunt malfunction or eye issue in the midst of all of this. I hold my breath each morning as I listen to her on the monitor, willing her to be okay. Sounds crazy, but all the hydro moms will relate.
Before this surgery, I had gone through two c-sections, which in my opinion, were a breeze. I thought my tolerance for pain was super high, so I got cocky, didn't really take the warnings about this one seriously, and I assumed everyone telling me that it would be far worse than a c-section was just a wuss. Well, it turns out, I'm not so tough after all. That hurt like hell, and I humbly admit that I am the wuss. I have handed my daughter over to surgeons time and time again, and when I hold her afterward, I can only imagine how much pain she's in. My respect and awe for Avery is at an all-time high, knowing now, firsthand, what the body goes through after anesthesia and major surgery. And my surgery wasn't even earth-shattering - it wasn't nearly as serious as Avery's brain surgeries, or as delicate as her eye surgeries. It wasn't like many other people's, which are accompanied by a horrible diagnosis, or necessary to save their life. But I've experienced something vaguely similar to what my child has gone through, and I have so much more admiration for her resilience and strength. I also have so much more respect for everyone who goes through worse. I saw a woman in the pre-op waiting room who had cancer, and I assume was there for surgery related to that. She looked so nervous, and her husband had his arms around her while they waited to be called back. That will surely remind you to keep your perspective and be grateful for why you are sitting in that waiting room. I also saw another patient, about 2 years old, and was reminded to be thankful that we weren't there for Avery this time. She was home with Papa, doing great and healthy. You get pretty sappy when you're about to go through something like this.
One of the biggest cautions I got about this procedure (after the pain!) was about the large scar I would have afterward. Sure, I can see how this would be disheartening to some women, who wear bikinis on a regular basis and who have never gone through anything traumatic before. The scar to me is not a bad thing. It's another souvenir from having two wonderful, amazing little girls, and a reminder that while pregnancy does a number on your body, I was lucky it could be fixed. When I brush Avery's hair or give her a bath, I see many scars on her little body. What kind of mom would I be if I treated scars as something ugly or bad? They are part of her journey, as this one is now part of mine. So while I appreciate their warning, it's the least of my worries. I was much more worried about not being able to hold my babies for six weeks, not pull my weight around the house, and having to give into the help of others while I get back to normal. But as I've been reminded by many this last week, in the grand scheme of things, six weeks isn't a big deal.
This week has been difficult physically, but it's also been the most productive week I've had in awhile. It's amazing how much you can accomplish with an ipad, a cell phone, and no kids hanging from your legs! I've gotten a ton of prepping and planning done for my sister-in-law's upcoming wedding, and I answered emails and calls that had been put on the back burner. And, although late to the game, I finally learned what all the fuss is about Pinterest! That force will pull you in for hours if you don't have anything else to do but lay in bed. To wrap up, here are some other things I've learned this past week:
1. You (unfortunately) use your core for everything...
2. Including laughing, so don't watch an Office marathon while recovering from ab surgery.
3. A shower is an amazing treat that shouldn't be taken for granted!
4. Percocet is not all it's cracked up to be. I'd make a horrible drug addict.
5. If someone told us how real our marriage vows would be; "In sickness and in health," John may have fled the scene.
6. As I've noted above, Pinterest is highly addictive. Much more addictive than Percocet.
7. I don't need to leave the house to incur damage to my bank account. It's worse, even.
8. Ten minutes of sunshine can turn your mood completely around.
9. I cannot comfortably sleep propped up against 3 pillows, on my back, for longer than one hour.
10. I married the most incredibly generous, caring, loving, selfless man on the planet. He's been the best nurse anyone could ask for, and I couldn't have done this without him.
11. Avery is the toughest girl I know, so much tougher than I, and I'll never forget that!
12. Being superstitious isn't crazy. This one is for us to remember when we're reading this years from now and recall the freaky things that happened during our journey with Avery ... We learned in the week before Lucy was born, that Avery's medical issues can pop up and scare us during the worst possible times. So my worry before this surgery was very much warranted. I got so paranoid after that time, that I insist on two, superstitious things - always keeping Avery's "barf bucket" in her room, because the day we take it out, she'll get sick. It's been behind her bed (clean) for eight months. The other thing is I have to have Avery's video monitor next to me while I sleep. The only two times I didn't have it in the last 6 months, she barfed in the middle of the night. While it didn't turn out to be shunt-related, it is still a scare. Whether you call it Murphy's Law or superstition, I'm sticking to these two things. Because... the night after my surgery, when I was a complete invalid, John was so busy he forgot to turn the monitor on. And what happened? Avery puked in the middle of the night and we spent a few hours that morning wondering if it was her shunt. So I'm not superstitious, but I'm a little stitious :) (Michael Scott, The Office... I've been watching a marathon, ya know.)
Before this surgery, I had gone through two c-sections, which in my opinion, were a breeze. I thought my tolerance for pain was super high, so I got cocky, didn't really take the warnings about this one seriously, and I assumed everyone telling me that it would be far worse than a c-section was just a wuss. Well, it turns out, I'm not so tough after all. That hurt like hell, and I humbly admit that I am the wuss. I have handed my daughter over to surgeons time and time again, and when I hold her afterward, I can only imagine how much pain she's in. My respect and awe for Avery is at an all-time high, knowing now, firsthand, what the body goes through after anesthesia and major surgery. And my surgery wasn't even earth-shattering - it wasn't nearly as serious as Avery's brain surgeries, or as delicate as her eye surgeries. It wasn't like many other people's, which are accompanied by a horrible diagnosis, or necessary to save their life. But I've experienced something vaguely similar to what my child has gone through, and I have so much more admiration for her resilience and strength. I also have so much more respect for everyone who goes through worse. I saw a woman in the pre-op waiting room who had cancer, and I assume was there for surgery related to that. She looked so nervous, and her husband had his arms around her while they waited to be called back. That will surely remind you to keep your perspective and be grateful for why you are sitting in that waiting room. I also saw another patient, about 2 years old, and was reminded to be thankful that we weren't there for Avery this time. She was home with Papa, doing great and healthy. You get pretty sappy when you're about to go through something like this.
One of the biggest cautions I got about this procedure (after the pain!) was about the large scar I would have afterward. Sure, I can see how this would be disheartening to some women, who wear bikinis on a regular basis and who have never gone through anything traumatic before. The scar to me is not a bad thing. It's another souvenir from having two wonderful, amazing little girls, and a reminder that while pregnancy does a number on your body, I was lucky it could be fixed. When I brush Avery's hair or give her a bath, I see many scars on her little body. What kind of mom would I be if I treated scars as something ugly or bad? They are part of her journey, as this one is now part of mine. So while I appreciate their warning, it's the least of my worries. I was much more worried about not being able to hold my babies for six weeks, not pull my weight around the house, and having to give into the help of others while I get back to normal. But as I've been reminded by many this last week, in the grand scheme of things, six weeks isn't a big deal.
This week has been difficult physically, but it's also been the most productive week I've had in awhile. It's amazing how much you can accomplish with an ipad, a cell phone, and no kids hanging from your legs! I've gotten a ton of prepping and planning done for my sister-in-law's upcoming wedding, and I answered emails and calls that had been put on the back burner. And, although late to the game, I finally learned what all the fuss is about Pinterest! That force will pull you in for hours if you don't have anything else to do but lay in bed. To wrap up, here are some other things I've learned this past week:
1. You (unfortunately) use your core for everything...
2. Including laughing, so don't watch an Office marathon while recovering from ab surgery.
3. A shower is an amazing treat that shouldn't be taken for granted!
4. Percocet is not all it's cracked up to be. I'd make a horrible drug addict.
5. If someone told us how real our marriage vows would be; "In sickness and in health," John may have fled the scene.
6. As I've noted above, Pinterest is highly addictive. Much more addictive than Percocet.
7. I don't need to leave the house to incur damage to my bank account. It's worse, even.
8. Ten minutes of sunshine can turn your mood completely around.
9. I cannot comfortably sleep propped up against 3 pillows, on my back, for longer than one hour.
10. I married the most incredibly generous, caring, loving, selfless man on the planet. He's been the best nurse anyone could ask for, and I couldn't have done this without him.
11. Avery is the toughest girl I know, so much tougher than I, and I'll never forget that!
12. Being superstitious isn't crazy. This one is for us to remember when we're reading this years from now and recall the freaky things that happened during our journey with Avery ... We learned in the week before Lucy was born, that Avery's medical issues can pop up and scare us during the worst possible times. So my worry before this surgery was very much warranted. I got so paranoid after that time, that I insist on two, superstitious things - always keeping Avery's "barf bucket" in her room, because the day we take it out, she'll get sick. It's been behind her bed (clean) for eight months. The other thing is I have to have Avery's video monitor next to me while I sleep. The only two times I didn't have it in the last 6 months, she barfed in the middle of the night. While it didn't turn out to be shunt-related, it is still a scare. Whether you call it Murphy's Law or superstition, I'm sticking to these two things. Because... the night after my surgery, when I was a complete invalid, John was so busy he forgot to turn the monitor on. And what happened? Avery puked in the middle of the night and we spent a few hours that morning wondering if it was her shunt. So I'm not superstitious, but I'm a little stitious :) (Michael Scott, The Office... I've been watching a marathon, ya know.)
Sunday, April 13, 2014
Avery is 4!
I know I am repeating myself, but Avery has come so very far in one year. She is in a much better place today in all aspects of her life - she's healthy, her corneas have survived (for the most part) for over a year, her shunt has held up for 7 months and she's moving along developmentally too. She's learned how to walk with a cane, and is (finally!!) talking more and more each day.
When Avery was born, we were told she would see only shapes and shadows, and after her first brain surgery led to meningitis, we were told she may or may not meet milestones, and there was no telling how she would develop. Thankfully, she has done far better than those original prognosis, and although her future is always unknown, her life so far has been better than we ever anticipated four years ago.
We are so proud of her progress, and made this video to recap the last crazy, amazing, fun, challenging, roller coaster four years. Happy Birthday, Avery - we love you more than you'll ever know.
When Avery was born, we were told she would see only shapes and shadows, and after her first brain surgery led to meningitis, we were told she may or may not meet milestones, and there was no telling how she would develop. Thankfully, she has done far better than those original prognosis, and although her future is always unknown, her life so far has been better than we ever anticipated four years ago.
We are so proud of her progress, and made this video to recap the last crazy, amazing, fun, challenging, roller coaster four years. Happy Birthday, Avery - we love you more than you'll ever know.
Sunday, March 30, 2014
Goodnight Sunny
I don't keep a baby book for Avery, so when she does something cute it's going on her blog!
Tonight, I was about to take Avery upstairs for bed, so I told her to say, "goodnight, daddy." She has transitioned over the last year from just kissing daddy goodnight to now actually saying, "guh-nah, daddy." But tonight, she took the initiative to say goodnight to everyone and everything. We cracked up as she kissed her toy house, then crawled onto the couch and kissed the window, "goodnight, sunny!" Then onto the lamp, sissy's swing, sissy's bouncy chair, Diego and then finally her potty chair. It was not only one of the sweetest things I've seen her do, it proves how well she's doing verbally and cognitively. So love that little girl.
Tonight, I was about to take Avery upstairs for bed, so I told her to say, "goodnight, daddy." She has transitioned over the last year from just kissing daddy goodnight to now actually saying, "guh-nah, daddy." But tonight, she took the initiative to say goodnight to everyone and everything. We cracked up as she kissed her toy house, then crawled onto the couch and kissed the window, "goodnight, sunny!" Then onto the lamp, sissy's swing, sissy's bouncy chair, Diego and then finally her potty chair. It was not only one of the sweetest things I've seen her do, it proves how well she's doing verbally and cognitively. So love that little girl.
Saturday, February 8, 2014
One year
Today we are celebrating a HUGE milestone. Avery's left cornea transplant is one year old, and still clear. This is like another birthday to a transplant recipient, so we are treating it like one! Cake, candles, and pictures, of course :) While the one year mark doesn't give us immunity from future issues, it does get us over a typical hurdle in terms of her body continuing to accept the transplant. If we continue to have failed grafts, we have little options as far as saving her sight, so this is a really big milestone, and honestly, one that I didn't see coming. As I have said before, it's very hard to remain optimistic when you see failure and disappointment time and time again, but this one proved me wrong, thankfully.
“Those who don't know how to suffer are the worst off. There are times when the only correct thing we can do is to bear out troubles until a better day.”
One year ago today, we were staring down the barrel of one of the hardest years of our lives. This was attempt #6 for a cornea transplant, which in our world, isn't super promising. If that wasn't enough, her brain shunt was malfunctioning, and John and I were up every hour at night readjusting her as she slept to keep her head elevated. I was also in the midst of first-trimester sickness. I was scared, angry, frustrated, and exhausted in every sense of the word. And it didn't get any easier. New transplants bring a ton of baggage with them, and keeping up with all of it with a small child is no easy task. They are extremely vulnerable, especially for the first few months, but continue to be for a long time. They require constant care, protection, and 'round-the-clock medication. Conveniently for us, we were already up around the clock due to her shunt issues, so peeling the tape for her eye shields off every couple hours to do drops was just added to the list. Plus, at that point, we were seasoned veterans. The very first Peter's Anomaly mom that I ever met told me, "it will eventually get easier, not because they are cured or get better, but you get used to it and that makes it easier." This is so true. When I look at things I handled last year versus when Avery was a newborn, it's like night and day. Even the simplest thing like eye shields at bedtime. I used to cry over the fact that we had to tape metal shields to our baby's face - it chapped her skin, made her poor little cheeks red and pulling it off was torture - for her and us! But now, nearly four years later, Avery just lays there and says "on" and "off" when we do them, and we don't even think about it anymore. (Although learning about gentler kinds of tape definitely helped!) Practice makes perfect, and sometimes you're unfortunately practicing things that really suck, but you get better at handling them. THANK GOD. Don't get me wrong, I had many a breakdown last year, and if you were a fly on the wall at my house, you probably wouldn't think I was handling it very well, but in the grand scheme of things, I'm pretty impressed with the three of us. That surgery one year ago was the first of four major surgeries for the year. In between, there were countless other struggles. One year ago, I thought our lives were unraveling at the seams.
But today, in this moment, I feel like all the stars are aligned. Funny how life is. It will knock you down over and over, but while you're down, you remember the times like these to keep you getting back up. Avery is doing better right now than she ever has. Her health has been great since September. This one year milestone is one she has not previously achieved. If we're really lucky, we'll celebrate another (her right cornea) on March 21st, and if we're lottery-winning-lightning-striking-twice-lucky, we'll celebrate another (one year since her last shunt revision) on August 14th. Developmentally, we're ecstatic with her progress. If you keep this kid out of the hospital for longer than a few weeks, she'll impress the heck out of you! Between the span of time since her last surgery, her awesome team at school, and having a sister to make her more independent, Avery is growing by leaps and bounds. She's saying a ton of words, using her cane like a pro, and mastering all the letters, shapes and colors. I'm beyond amazed by this girl every day, and she's my number one inspiration. She's defied so many odds, and does things that we never expected her to do. And thankfully, we never take one of those things for granted. We sit back in amazement, smiling ear-to-ear, each time she says a new word, or recognizes a color, or gives her sissy a toy to keep her from crying. If you would have told me one year ago today where we'd be now, I would have been so incredibly relieved. But that is what keeps you going - the knowledge that anything is possible and whatever hellish situation you may be going through at any given time is probably temporary.
We are so proud of Avery, we need a new word for "proud." She continues to be an overcomer, and her positive light is seen by everyone around her. Happy One Year, and here's to many, many more!
“Those who don't know how to suffer are the worst off. There are times when the only correct thing we can do is to bear out troubles until a better day.”
One year ago today, we were staring down the barrel of one of the hardest years of our lives. This was attempt #6 for a cornea transplant, which in our world, isn't super promising. If that wasn't enough, her brain shunt was malfunctioning, and John and I were up every hour at night readjusting her as she slept to keep her head elevated. I was also in the midst of first-trimester sickness. I was scared, angry, frustrated, and exhausted in every sense of the word. And it didn't get any easier. New transplants bring a ton of baggage with them, and keeping up with all of it with a small child is no easy task. They are extremely vulnerable, especially for the first few months, but continue to be for a long time. They require constant care, protection, and 'round-the-clock medication. Conveniently for us, we were already up around the clock due to her shunt issues, so peeling the tape for her eye shields off every couple hours to do drops was just added to the list. Plus, at that point, we were seasoned veterans. The very first Peter's Anomaly mom that I ever met told me, "it will eventually get easier, not because they are cured or get better, but you get used to it and that makes it easier." This is so true. When I look at things I handled last year versus when Avery was a newborn, it's like night and day. Even the simplest thing like eye shields at bedtime. I used to cry over the fact that we had to tape metal shields to our baby's face - it chapped her skin, made her poor little cheeks red and pulling it off was torture - for her and us! But now, nearly four years later, Avery just lays there and says "on" and "off" when we do them, and we don't even think about it anymore. (Although learning about gentler kinds of tape definitely helped!) Practice makes perfect, and sometimes you're unfortunately practicing things that really suck, but you get better at handling them. THANK GOD. Don't get me wrong, I had many a breakdown last year, and if you were a fly on the wall at my house, you probably wouldn't think I was handling it very well, but in the grand scheme of things, I'm pretty impressed with the three of us. That surgery one year ago was the first of four major surgeries for the year. In between, there were countless other struggles. One year ago, I thought our lives were unraveling at the seams.
But today, in this moment, I feel like all the stars are aligned. Funny how life is. It will knock you down over and over, but while you're down, you remember the times like these to keep you getting back up. Avery is doing better right now than she ever has. Her health has been great since September. This one year milestone is one she has not previously achieved. If we're really lucky, we'll celebrate another (her right cornea) on March 21st, and if we're lottery-winning-lightning-striking-twice-lucky, we'll celebrate another (one year since her last shunt revision) on August 14th. Developmentally, we're ecstatic with her progress. If you keep this kid out of the hospital for longer than a few weeks, she'll impress the heck out of you! Between the span of time since her last surgery, her awesome team at school, and having a sister to make her more independent, Avery is growing by leaps and bounds. She's saying a ton of words, using her cane like a pro, and mastering all the letters, shapes and colors. I'm beyond amazed by this girl every day, and she's my number one inspiration. She's defied so many odds, and does things that we never expected her to do. And thankfully, we never take one of those things for granted. We sit back in amazement, smiling ear-to-ear, each time she says a new word, or recognizes a color, or gives her sissy a toy to keep her from crying. If you would have told me one year ago today where we'd be now, I would have been so incredibly relieved. But that is what keeps you going - the knowledge that anything is possible and whatever hellish situation you may be going through at any given time is probably temporary.
We are so proud of Avery, we need a new word for "proud." She continues to be an overcomer, and her positive light is seen by everyone around her. Happy One Year, and here's to many, many more!
(Last year, her failed grafts were very cloudy and she had a lot of trouble getting around. She put objects right up against her eyes to try to see them and she ran into a lot of walls :( And the most tell-tale sign: no red reflexes from the camera flash. Now today, her new corneas are clear, and as you can see, the reflexes are visible!)
Friday, January 10, 2014
Special Moment
I had one of those moments this morning with Avery when I just wanted to press the pause button on my life and keep things this way forever. It was a simple thing, but one of those life moments that are so special and precious that you, the parent, know how valuable it is. She's been doing really well lately on mimicking sounds and she makes an attempt at pretty much any word you ask her to say. This is huge progress from even the summer and we are so excited.
She has recently found it funny to repeat sounds or exclamations such as "oh yeah!' or a silly laugh, snort or noise. I did one of these laughs this morning and she kept repeating it, followed by giving me an eskimo kiss, which she also just learned to do. She let out big belly laughs and gave me those huge, Avery smiles each time I made the noise, and she tried her hardest to match it. Then she would play with my hair and rub my face, because she loves when I say, "mama's hair, mama's face." I'm sure many parents understand this feeling - when your child learns something new, and is so proud of it that they want to do it over and over. Plus, I got the feeling that she was so happy to play a game and get full attention from her mommy, since that isn't always the case with a new sister around. This back-and-forth exchange was so simple when you compare it to most kids, but to me, it's a big deal. It shows she sees, she is learning to mimic sounds, and she's cognitively more developed. This reaction to my funny laugh will probably come from Lucy when she's 12 months old, and Avery is approaching 4 years in April. This is why these moments are so very precious and I have a celebration inside each time they happen. Because we worked so very hard and waited so very long to get here.
I just had to include this entry so I could look back some day when things are bad, and remind myself of this special moment.
She has recently found it funny to repeat sounds or exclamations such as "oh yeah!' or a silly laugh, snort or noise. I did one of these laughs this morning and she kept repeating it, followed by giving me an eskimo kiss, which she also just learned to do. She let out big belly laughs and gave me those huge, Avery smiles each time I made the noise, and she tried her hardest to match it. Then she would play with my hair and rub my face, because she loves when I say, "mama's hair, mama's face." I'm sure many parents understand this feeling - when your child learns something new, and is so proud of it that they want to do it over and over. Plus, I got the feeling that she was so happy to play a game and get full attention from her mommy, since that isn't always the case with a new sister around. This back-and-forth exchange was so simple when you compare it to most kids, but to me, it's a big deal. It shows she sees, she is learning to mimic sounds, and she's cognitively more developed. This reaction to my funny laugh will probably come from Lucy when she's 12 months old, and Avery is approaching 4 years in April. This is why these moments are so very precious and I have a celebration inside each time they happen. Because we worked so very hard and waited so very long to get here.
I just had to include this entry so I could look back some day when things are bad, and remind myself of this special moment.
Friday, January 3, 2014
Secret Santas
As this blog serves as documentation of Avery's journey, we have to include a HUGE surprise our family got this Christmas. Our dear friend, Jen Satchell is one of the sweetest people you'll ever meet. She's always thinking of us and Avery; for every single surgery or major appointment that she had this year, I received an encouraging text message from Jen, which is truly the best thing anyone could do for us. She did not stop there, though! She let us know a few weeks ago that her team at work "adopts" families each year for Christmas, and she had not only nominated us, but we were chosen. We didn't really know what to say - we were so touched and speechless, actually. Our family and friends have done so many generous things for us since Avery was born. We always say that we don't need anything but their good thoughts, prayers, and the occasional call to let us know they are there. Regardless, we've been gifted with meals, had our lawn and snow taken care of, our dog cared for, toys and books for Avery, flowers, money toward college, medical expenses and even for our cord blood banking (just to name a few!) We are so appreciative of everyone's kindness and generosity, even though we think it's too much! Our way to return the favor is to continually look for ways to help others, including all of the dear people in our lives, if they ever are in need. We never thought we'd be in the position of caring for a child with chronic medical conditions, and even though we could handle everything without a single act of kindness, it definitely makes the hard times easier when you know you have such an amazing support system.
This Christmas, the support system included a team of wonderful people from Flagstar, who have never met us, but wanted to help us anyway. For that, we cannot be more grateful. On the evening of December 18th, we were surprised with several boxes of gifts for our family. I told Jen that I felt like we were on Ellen or something. We are still blown away and it only reminds us to stay positive, and to continue to help others in every way we can. Because everyone is going through something and everyone needs to know that they have people out there who care about them.
Thank you again to the team at Flagstar, and especially to Jen. I've included a video of our girls saying thank you as well! We wish you a happy, healthy new year!
Love,
The Devereuxs
This Christmas, the support system included a team of wonderful people from Flagstar, who have never met us, but wanted to help us anyway. For that, we cannot be more grateful. On the evening of December 18th, we were surprised with several boxes of gifts for our family. I told Jen that I felt like we were on Ellen or something. We are still blown away and it only reminds us to stay positive, and to continue to help others in every way we can. Because everyone is going through something and everyone needs to know that they have people out there who care about them.
Thank you again to the team at Flagstar, and especially to Jen. I've included a video of our girls saying thank you as well! We wish you a happy, healthy new year!
Love,
The Devereuxs
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