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.)
Wednesday, June 4, 2014
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
Friday, December 6, 2013
Appreciating the little, big things
Lucy is just over two months old. We had her two month check-up this week and the pediatrician told me she's "perfect" - doing everything she should be doing, if not more. As she checked Lucy's eyes with the light, I smiled and knew how precious it is that she can even do that part of the exam. Lucy's pupils shrank, and the doctor saw two bright, red reflexes, no problem.
At this point in Avery's life, she was barely getting over her bacterial meningitis infection, and we were being told that her new cornea transplant was failing before it even had a chance to work. We were just starting therapy to get her to learn to turn her head toward a light, or to bring her legs to an noisy object so she would be aware she could kick her legs. Avery was completely blind and as cruel as it sounds, was basically behaving like a slug. I am aware that two- month-old babies don't have a completely developed vision system, and they are not seeing very clearly. The pediatrician and eye doctors assured me of this over and over when they examined Avery. However, I'm now aware that they were just trying to make me feel better. The difference between Lucy's vision at two months and Avery's is incomparable. It is glaringly obvious that Lucy sees - she smiles at the sight of our faces, she tries to bat at the toys hanging from her gym, and she turns toward me as I walk by her. I can move a toy over her head and she tracks it. It's an amazing experience that takes my breath away every single day. John and I still think "so this is what it's supposed to be like!" It's a feeling you could only know if you only ever had a baby who did not do what they "should be doing." And I'm grateful to know this feeling because I wonder if I would just take all these milestones for granted if I never had Avery. If I never knew how it feels to have these things absent, would I appreciate so much that they are happening, so easily, every day with Lucy? I feel like I get a gift that many moms don't. It also makes me appreciate and respect people like my dear friend, Joanna, who like many other special needs moms, had her "typical" child first. She knew what her baby "should be doing" and every day had to look at her second born daughter, with Peter's Anomaly, who was clearly not doing those things. I can imagine that instead of feeling relief and joy every day, like I am, she felt scared and so sad. I can also now appreciate even more all my friends who had their special needs baby first. We were hit with moments every day of our second pregnancy when the fear of "it happening again" paralyzed us. And when the baby is born healthy, we were overcome with so much relief and happiness, words will never describe. It's just an incredible feeling that you have every time you look at your healthy child, or experience them meeting a milestone that your first child did not.
Many times I also feel guilty for being so happy about how easy and typical Lucy is. Neither we nor Lucy have to work as hard as we did with with Avery. She eats, sleeps, poops, plays. That's it. Besides her little stint in the hospital, she only has to go to the doctor for routine visits and shots. And not to minimize the experience of watching your baby get a shot, but .... it's not a big deal. If you never had to see your baby go through anything worse, then I can see how it may be traumatizing. But let me assure you, it's not. They don't even remember it 2 minutes after it happened. As Lucy was getting her three pokes this week, my exact thoughts were, "aww, she looks so cute hysterically crying!" Again, that may sound harsh, but only a mom who has seen what I've seen would understand that shots are no sweat. This second experience is a completely different one than my first, and has made me a different kind of mom. I have to learn how to juggle my two completely different children, and as they get older, learn to take both of their feelings into consideration. Lucy will feel like we favor Avery since she'll require more time and attention. And Avery may feel jealous of Lucy, who doesn't have to struggle with the same things or feel different from everyone else. Our lives will continue to be challenging, and I'm sure there are things that lie ahead that may suck more than what we've already gone through.
But in keeping with my "take it one day at a time" mantra, today I'm grateful for the gift of appreciating that in their own different ways, both my girls are looking at me, smiling, and doing what they should be doing.
At this point in Avery's life, she was barely getting over her bacterial meningitis infection, and we were being told that her new cornea transplant was failing before it even had a chance to work. We were just starting therapy to get her to learn to turn her head toward a light, or to bring her legs to an noisy object so she would be aware she could kick her legs. Avery was completely blind and as cruel as it sounds, was basically behaving like a slug. I am aware that two- month-old babies don't have a completely developed vision system, and they are not seeing very clearly. The pediatrician and eye doctors assured me of this over and over when they examined Avery. However, I'm now aware that they were just trying to make me feel better. The difference between Lucy's vision at two months and Avery's is incomparable. It is glaringly obvious that Lucy sees - she smiles at the sight of our faces, she tries to bat at the toys hanging from her gym, and she turns toward me as I walk by her. I can move a toy over her head and she tracks it. It's an amazing experience that takes my breath away every single day. John and I still think "so this is what it's supposed to be like!" It's a feeling you could only know if you only ever had a baby who did not do what they "should be doing." And I'm grateful to know this feeling because I wonder if I would just take all these milestones for granted if I never had Avery. If I never knew how it feels to have these things absent, would I appreciate so much that they are happening, so easily, every day with Lucy? I feel like I get a gift that many moms don't. It also makes me appreciate and respect people like my dear friend, Joanna, who like many other special needs moms, had her "typical" child first. She knew what her baby "should be doing" and every day had to look at her second born daughter, with Peter's Anomaly, who was clearly not doing those things. I can imagine that instead of feeling relief and joy every day, like I am, she felt scared and so sad. I can also now appreciate even more all my friends who had their special needs baby first. We were hit with moments every day of our second pregnancy when the fear of "it happening again" paralyzed us. And when the baby is born healthy, we were overcome with so much relief and happiness, words will never describe. It's just an incredible feeling that you have every time you look at your healthy child, or experience them meeting a milestone that your first child did not.
Many times I also feel guilty for being so happy about how easy and typical Lucy is. Neither we nor Lucy have to work as hard as we did with with Avery. She eats, sleeps, poops, plays. That's it. Besides her little stint in the hospital, she only has to go to the doctor for routine visits and shots. And not to minimize the experience of watching your baby get a shot, but .... it's not a big deal. If you never had to see your baby go through anything worse, then I can see how it may be traumatizing. But let me assure you, it's not. They don't even remember it 2 minutes after it happened. As Lucy was getting her three pokes this week, my exact thoughts were, "aww, she looks so cute hysterically crying!" Again, that may sound harsh, but only a mom who has seen what I've seen would understand that shots are no sweat. This second experience is a completely different one than my first, and has made me a different kind of mom. I have to learn how to juggle my two completely different children, and as they get older, learn to take both of their feelings into consideration. Lucy will feel like we favor Avery since she'll require more time and attention. And Avery may feel jealous of Lucy, who doesn't have to struggle with the same things or feel different from everyone else. Our lives will continue to be challenging, and I'm sure there are things that lie ahead that may suck more than what we've already gone through.
But in keeping with my "take it one day at a time" mantra, today I'm grateful for the gift of appreciating that in their own different ways, both my girls are looking at me, smiling, and doing what they should be doing.
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