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Archive for May, 2012

We all do it. Right? We all have this odd tug of fear when it comes to things we don’t understand. We all have this little twinge of fear that erupts when a situation presents itself that is quite far outside of our “norm.” I’ve seen it happen many times. I’ve witnessed people stumble over their words. I’ve stood there with my eyes involuntarily blinking slowly waiting for someone to rephrase the sentence which just left their mouth. (The most notable situation coming to mind being when the ENT asked what Alyssa’s life expectancy was.) We’ve all seen it and truth be told… we’ve all done it. We’ve all, at some time or another, jumped to conclusions about a situation which we don’t fully understand. We’ve placed our own “rules” on the lives of another. We’ve assumed because something was done a way we wouldn’t do it that it was most likely done “wrong.”

I think judgment is a place where we get this glorious “free pass” in the parenting department. I’d like to think that I’d raise neuro-typical kids to be free from judgment and accept those around them without a second thought. However, I’m also aware that Neil and I are not the only influences that our child(ren) would have. I’d be battling against a world that is hell-bent on being divided. A world where people are still separated based on religion, race, sexual orientation, etc… as much as we try as a culture to deny it. It happense every.single.day. Neil and I would be fighting a battle of raising a sweet girl to love people as they are and not love them simply if they live up to what she wants them to be. Instead, we were blessed with this beautiful little girl who loves loving people regardless of their life situation, and that is without any education or influence from us. Certainly she judges character but she does so on an energetic level. She does so based on how people treat her. It will forever amaze me how she reacts to strangers. I can tell you the people who are putting on a front about being “accepting” and the people who are truly talking to Alyssa as they would any other child. She can tell you that too. I’ve seen her smile her biggest smile at a homeless man on the side of the street and I’ve seen her shriek in fear at a seemingly “kind” well dressed stranger at the market. For her it’s about being able to sense that twinge of fear that someone has when they experience a special needs kiddo up close either for the first time… or for the first time they feel comfortable enough to approach.

That’s the thing about Alyssa. She’s approachable. She’s this happy little lady who spends the better part of her time squealing with delight. I remember when her skin was really bad as a baby people would see her beaming little face and then get a bit of fear about her skin. Now they just ask general questions. Some keep upbeat and some get this “Oh, that poor girl.” feeling about them… for about a second. She doesn’t allow for it. Alyssa has never known life differently and she is honest to goodness happy to be exactly who she is. The fact of the matter is I really truly don’t mind answering questions… as long as the questions are coming from a place of wanting a better understanding. Truth be told I usually have a hard time not dumping her entire story on a stranger. HA! It’s not that I don’t want people to know… it’s that I want to explain it to a point that they’ll understand… and sometimes I don’t think that is possible. I want them to leave that little twinge of fear. I want them to get that parenting is not all that different for me than it is for them. Certainly there are people in my life who understand at least most of what we are going through. Then, there is this spectrum of people from those who just completely don’t understand (and are completely unwilling to take the time to try) to those who have let go of the fear and worry and grasped on to the fact that our life as a family is not all that different from that of any one else.

Of course there are people scattered all over the spectrum along the way. Typically what sets them apart… is knowledge. It’s the taking the time to learn and to at least try to wrap their brain around something that is outside of them. Learning about a situation that they may never live through but reaching this point of understanding that just because it isn’t the way they live life… it isn’t actually all that different. It can be said for so many things besides special needs parenting: adoptive parenting, foster parenting, step-parenting, same-sex couple adoption, same-sex couples child-bearing, people deciding not to parent, etc etc. The list goes on and on and of course encompasses far more than parenting. It’s the fear of the unknown, the fear of the different, and the fear of how everyone else will react if one person in a group decides to accept and welcome someone who, at least on the surface, is different.

The easiest way to dispel all of those fears?? Learn. Take the time to step outside of yourself and your own situation. Learn. Take the time to realize that as different as people appear at first glance they are all quite similar. At the end of the day each of us wants to be loved beyond measure, accepted for exactly who we are, and surrounded by people who do both of those things. We all have the same basic needs of food, shelter, and water… even if how we have those needs met may vary greatly. It’s easy to see someone living a life far different from our own and say “Oh. They are weird.” or “Ugh. That’s just plain gross.” or anything else that denotes we’ve chosen the better path. The reality of the situation is… none of us know what the best path is for anyone else. What I do know is that each of our paths would be easier to walk if instead of jumping to the conclusion that someone’s life is weird or gross, we took the time to get to the foundation and see that we are all just doing our best to live life as happily as possible. Gosh how much easier would it be to be happy if each of us was accepted for who we are instead of being persecuted for not being exactly what someone wants us to be. After all, there are a LOT of “someones” in this world, and each of them has a different opinion. You are never going to manage to fill the mold that each of them has for what a perfect person should be. So, you might as well be yourself and only walk the path with those who take the time to learn and see that you are worth walking beside… no matter how similar or dissimilar the two of you may be.  At the end of the day, you’ll be better for it… and so will they! That’s a promise! ❤

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“Develop an attitude of gratitude, and give thanks for everything that happens to you, knowing that every step forward is a step toward achieving something bigger and better than your current situation” – Brian Tracy

Some days it is a challenge. We’ve all lived one of those days. You know the day when you wake up in a bad mood, stub your toe on the way down the hall to get the screaming inconsolable baby, and you wind up sobbing like a baby … with the baby. If that’s just me, then please pretend I made that up and it has never happened to me either. Point being that there are some days when nothing seems to go your way. I’m fairly certain every verbal human has at some point uttered “THIS IS THE WORST DAY EVER!!” However, for the most part the days aren’t actually that bad when you reflect upon them. The things that make worst days ever are usually only a big deal on that day. For about the last year and a half I’ve tried my best to focus on the good. I falter some days… I am so not even going to try to deny it. On the other hand, the pediatrician leaving would have surely kept me down for far longer a mere 18 months ago. Instead, it served to show me once again how truly blessed my little family unit is.

I’m fortunate… some may even say lucky. Within mere hours of posting I had been inboxed multiple doctors who may work out for Alyssa, I had received a very kind email from Dr. G which I will save and pull out on the days I’m stuck in self-doubting, and I’d made an appointment with a possible pediatrician. I went from feeling deflated and abandoned to feeling supported and surrounded. I have the blessing of this group of people who wrap my family in love and support. They are so very varied in their parenting practices, their backgrounds, etc… and yet… they respect one another, they offer advice to one another, and they SUPPORT one another. Each time that begins to slip my mind something happens to knock me right back to a place of gratitude. I’m grateful not only that they are in my life, but that they ARE so varied. Life would truly be boring if we all walked the same path. However, life would be a nightmare if everyone was incapable of supporting people with differing opinions. I am thankful that my friends are able to support and uplift one another even if they are walking dissimilar paths to get to the same destination.

I think that’s one reason I’m so very grateful that I work where I do. I get to work with four of the most amazing women I’ve ever met and I am surrounded daily by people from so many different backgrounds. What brings them all together? A desire for wellness. No matter what happened before they walked through the front door… they walked through it to make their life, or that of their child, better. How they choose to get there, apart from adding adjustments to their routine, varies immensely. I watch people learn from one another each day. I watch two doctors engage practice members in discussions that challenge them to ask “Why?” instead of simply following the herd. I’m truly inspired each day by the people I interact with. There aren’t many people who can say that.

Furthermore, above working with these women, they’ve become part of that support circle. They are people I can turn to for knowledge and advice and know that I am going to get honest (ha! sometimes brutally honest!) and real replies. They are people who care about my family. Tonight as I was already filled with gratitude about the events of the day I was even further reminded of how blessed we are. I was preparing dinner with Alyssa in the kitchen. I’d plugged Pandora into the iJuke and she and I were rockin out to some chick music while making an awesome dinner. Then, out of the blue she started crying. It wasn’t her normal cry, but instead a cry that meant she was in pain to the point of being scared. I pulled her out of her chair and gave her a once over to see if she’d pinched a finger or something. Nothing. By that point Neil had come out to see what was going on. We couldn’t figure it out. She was still crying. I didn’t know who to call because… yep… no pediatrician. We tried to console her but she was just shrieking. I replayed it in my mind and the only thing we could think was the way she’d bent in the chair had caused her to pinch something. Either way she was.not.happy. Now, I was in panic… debating ER but it seemed “over the top.” So, I debated calling Dr. K. I debated it for a good few minutes. I mean, she was getting ready to leave for vacation. I soooo did NOT want to bug her. Then, I kept thinking “If she finds out later I didn’t call her… she’ll smack me.” Finally, Alyssa hit the high pitch again and I dialed the phone. Dr. K talked me through getting ice on it, getting her some motrin if that didn’t help, and giving her an update in a bit. Then, when I did update that after a bit of icing Alyssa had calmed and was hanging out calmly on the couch. She replied that her next step would have been coming over. Yes. You read that right. Now, we are not neighbors. We live on complete opposite sides of town. That would have been a good couple hours out of her night with a flight leaving the next day. That’s just the kind of selfless she is. I’m lucky she’s my boss, but I’m even more lucky she’s my friend.

As the night drew to a close tonight with Alyssa tucked in bed and Neil dozing beside me I couldn’t help but lay there in a complete state of gratitude. Truly. I am so very grateful for the people in our lives. Every. Single. Day.

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came from Alyssa’s pediatrician in regards to an email I’d sent yesterday. I’m grateful I didn’t read it until I made it home this evening. I still haven’t fully processed it. It’s nothing horrible but I still just can’t quite get my brain to wrap around it. I sent her an email requesting a couple prescriptions I needed for Alyssa. She’s always been so good to us about not making us haul down to the office for the “little” things. However, instead of the standard reply with attached documents or notification that they were available for pickup… I got a reply that she has left the practice. At first I didn’t think much of it. She’s moved offices three times in the last five years. We always very willingly follow her. However, as I read on she gave recommendations for other pediatricians in the valley. Before I could even finish the email I felt tears hitting my cheeks. By the time I’d finished reading the email Alyssa was asleep (I was checking emails as she was drifting) so I slinked out of her room and shared the news with Neil. True to form he was calm and level-headed about it. It stinks but what can we do? I mean, aside from be grateful that we had this woman as our PCP for over five years.

The thing is, right now? All I can do is go back and forth from reliving moments with her to panicking about having to explain five VERY full years to someone new. See, Dr. G is the kind of woman who remembers the first time we met as well as our last visit. She remembers the details and keeps them straight. As a matter of fact I didn’t know quite how well she remembered that first day until Alyssa’s five-year well check. I’m wondering if she knew at that point but could not disclose it. I say that because we had quite a bit of a “memory lane” conversation that day. She recounted the day we met in quite a similar way to how I do. It surprised me because for me it was my daughter’s first pediatrician appointment and it was two days after we’d left the NICU when I was still frantically trying to land on my feet. I’d have assumed for Dr. G it was just another new patient exam. Instead she recounted tiny details and when I told her I was surprised she said something to the effect of: “You’re some of the most amazing people I’ve ever met! Of course I remember the first time I met you!” I was taken aback because we feel so very similarly about her.

See, Dr. G is not the kind of doctor that lost her “person” somewhere on the way to becoming a doctor. She practices without ego, with compassion, and with the ability to listen as well as she informs. That very first visit was when I pulled the glove off Alyssa’s little hand and told her they’d told us it was eczema but I wasn’t buying it. She agreed and said “I have no idea what that is. I know it’s not eczema, but I have no clue. I, however, do know someone who WILL know.” Sure enough she referred us out to the dermatologist who wound up diagnosing Alyssa. That’s the beauty that is Dr. G. She is knowledgeable and willing to help. However, she’s not afraid to admit when she doesn’t know something and call in for consult. It’s been a blessing to us throughout the last five years. She has been a blessing to us throughout the last five years.

It’s odd. The bond special needs parents form with doctors. I mean, sure, typical kids have well checks… if you choose to take them. Parents see doctors quite a bit the first year and a couple of times the second year and then annually after that. I get that they grow attached to a pediatrician. On the other hand… there was a time when we were in Dr. G’s office so frequently that the staff knew us by name and some had formed pretty big bonds with our kiddo by the time she left her last practice. This is a woman who I’ve had to wake up at an ungodly hour multiple times. This is a woman who took my mother’s intuition seriously every step of the way. This is a woman who hopped on the phone when Alyssa fell ill and had to be transferred causing me to have a complete and total meltdown because it echoed way too closely to having to transfer our tiny three-day old baby. That phone conversation is one that I needed more than anything in that moment. I’ll never forget her tone when she said: “This isn’t the same Jessica. It isn’t. No one is taking your baby away from you. No one is saying you can’t be by her every second. This is different.” It was exactly what I needed to hear in that moment. That’s what Dr. G is amazing at. Knowing what to say!

We are so fortunate as a family to have these amazing doctors in our lives who are also amazing people. Luckily we are to a point of needing a PCP for the simple purpose of  having one. However, it still means I’m going to have to find one who we feel confident in. I’m also grateful I found out when Alyssa is stable. I’d rather search before we are in a “NEED” situation. Thankfully most, if not all, of her well care is provided by Dr. Koury and Dr. Berry. Standard sniffles and such fade quickly now that she gets adjusted regularly. On the other hand, we’re going to need someone for the “what ifs” of life and for things like wheelchairs and leg braces and such. Ah well, I hope she left for a great and happy reason. Perhaps she’s taking a few years off to spend with her growing kiddos. Life passes quickly. I honestly can’t believe we’ve known her for over five years.

So, wish us luck in finding a new pediatrician. Also, if you are in the Vegas area and know of a stellar pediatrician who isn’t going to give me too much flack about not vaccinating, handles a fair bit of special needs kiddos, and is affiliated with Sunrise… please share their info! Here’s hoping we find someone to fill Dr. G’s big ol’ shoes!

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To me, to you if you are a mom, and to each woman who has taken the time to treat someone with love and kindness when they needed it most.

I’ve been trying to begin blogging again. Something will happen and I will want to share. Then, something happens that draws my attention away. Facebook has definitely killed a bit of the blogger in me. I can snap a pic, throw a caption on it, and upload it from my phone in about 10 seconds flat. However, there’s a lot lost in not taking the time to form complete sentences or thoughts. Facebook lends itself to quick segments of daily life. It’s good because it keeps people in the loop, but it’s bad because it keeps me from really discussing the things that are happening with us. Although, the reality of the situation is that it’s been just over a year since we moved into our new house… and for the most part?… we’ve been blessed by a very uneventful year. A year I think we all truly needed. The first four years of Alyssa’s life were… overwhelming… to say the least. HA! We spent time dealing with the big stuff and then when that calmed we weeded through the small stuff. Then, we hit “normal.” We hit a place where we had a day to day routine just like any family, even if it wasn’t a routine like any other family. Truth be told we kind of just coasted this last year.

The coasting did us well. There were a few speed bumps along the road. The largest of which was a medication mix up that landed Alyssa in the ER, but luckily we caught it soon enough that it was a quick fix. Her little neurological and immune systems are kicking so much tush! Thanks, in no small part, to regular chiropractic care. When she gets a cold now it is not a code red situation. She gets a cold and fights it like a typical kid and then we go about life like it was never here! Even when Neil got pneumonia (we have been together nearly 10 years and I’ve never seen him so ill) and passed the cold to her, it never spiraled to pneumonia!! She’s a tough little cookie and I am more and more proud of her each day.

As you float through life with one week running into the next you eventually hit a point of “WOAH! Where’d the time go?” and I think that’s where I am. I have a FIVE year old daughter. I still am adjusting to that 3 months into it. I feel like the time from her fourth to her fifth birthday flew by. Not in a bad way but instead in a good way that let us all relax. Along the way she’s grown to LOVE eating. I can’t get over how the kid who used to scream at the sight of a spoon can now down two pureed avocados in 20 minutes flat. HA! She’s also been blessed with an amazingly involved teacher and support staff this year. They more than made up for the lackluster (understatement of the year) teacher she had last year. My mother-in-law has been amazing since I returned to work. (OK she was amazing before that, but she’s really picked up the slack of me going back to work.) Alyssa is surrounded by love and care everywhere she goes and her bright and shiny attitude proves that daily.

I had been slowly working on a plan of action in the back of my mind over the last month or so. I wanted to plot some changes for summer vacation. Alyssa’s seizure meds haven’t really changed since she was 3 and I think judging by her breakthrough seizures we’re approaching the need to do something different. Her diet has been a bit “boring” for the last year and I wanted to work on introducing new foods now that she gets so excited about eating. She’s been spitting up more frequently again and my gut (no pun intended) tells me it’s from overwhelming her system with so much of the same food. We are getting allergy testing done at the end of the month to appease the GI. That is a REALLY long story that we will just skip and say that her next GI appointment may be her last with this GI… we shall see. So, long story short I was going to talk to Neil and my MIL about getting in gear this summer, getting out of coasting, and get to working with Alyssa to get her eating more variety, seizing less if at all, and working on her lower body strength. I just had to piece together a game plan.

Then, it happened. The final push I needed to get me in gear. We took my mom and grandmother out on Friday for Mother’s Day dinner. We’d all had a good meal and we went to leave. There was an obviously homeless man sitting on the sidewalk beside the restaurant and he asked Neil if he had any change. He didn’t but offered to go grab a grocery gift card out of the car. My mom overheard and pulled money out of her purse because she thought Neil was going to bring the guy to the car. Meanwhile Neil was talking to the guy while leaning on Alyssa’s wheelchair. When I walked up I handed the guy the money my mom had handed me and he looked up and thanked me sincerely. Then, he turned and asked Neil what Alyssa had. Neil replied “Incontinentia Pigmenti.” and the man said “Oh. It is just that she reminds me so much of my sister. She has Cerebral Palsy.” I said “Oh! Our friend’s daughter has that as well.” He got choked up and said “Yeah. She’s in a home. She really… she just didn’t even get to have a life ya know?” and the tears hit his cheeks. I said “Oh man. I’m so sorry. Things have changed so much though. This little lady has a happy life.” He looked at her and smiled through tears. I turned to Alyssa and said “Can you say ‘hi.’?” and she looked at him and smiled this big huge smile and you could see the joy fill him head to toe. We chatted a bit longer. We said our goodbyes and told him to have a great weekend. He just had the most genuine energy about him. Like, I’m sure there are people who tell stories to play for sympathy. However, this just wasn’t at all that type of situation. He’d gotten the money before the story telling. I left and just felt… blessed.

I felt blessed to be able to take my mother and grandmother out to dinner without worry that we’d not have a roof over our heads. Blessed that Alyssa was born in an era when people who were born disabled weren’t separated from their families. Blessed that Alyssa was a shining light in my life. She is so beautifully without judgment. She takes people at face value. I’d like to think I’d have raised a typical five year old who would smile at a perfect stranger in a way that conveyed “HI!” However, the reality of the situation is… so much of who Alyssa is has little to do with who we are. She’s this amazing person and we get the amazing blessing of fostering her little personality each day.

So, I think that Mother’s Day is as good a day as any to state publically that changes are in the works. We are going to work together in the coming months on the things that kind of went on the back burner as we coasted for a year. We are going to focus on adding new foods into her diet, weaning down to using the g-tube as little as possible (we won’t work towards getting it removed unless she learns to take meds without fighting. HA!), working on her lower body strength by adding in more physical therapy at home, and lastly working on it together as a team. Alyssa has a way of bringing us all together. We are going to embrace that and support her each and every day in every way we can. When she’s an adult? I want people to be able to say: “You know when Alyssa was a little girl… she had a life that was almost as amazing as she is!” After all, I’m not going to overshoot the goal and try to hit her level of amazing… that’d just be showing off. 😉 Here’s hoping I can get back in the habit of updating more than annually! HAHA!

Our beautiful growing girl!!

The whole happy family!

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