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Archive for May, 2010

that remind me just exactly how blessed we are by the people in our lives. Sure I know every day that we are surrounded by an amazing group of people who lift us up in ways that I could have never imagined possible but certain days just shine above others. Today was one of those days.There is something about my daughter that draws in people with the most amazingly genuine spirits. You know the people who at the end of the day you pause and think “How is it that they are so awesome and don’t even realize it?!”

I took Alyssa into school today because there was no bus aide for the AM bus. (Total tangent: I heard an ad by the president today about a site to help boost high school kids with text messages and voicemails to try to prevent the drop-out rate from climbing any further from the average 30% it has already hit. All I could think was “Hmmm maybe if people saw the need to fund schools from jump-start then kids would want to stay.” It’s just loony to me that we are going to leave all of the issues unaddressed until kids hit high school aged…yeah… way to be proactive. OK… I’m stepping off my soapbox now.) A little secret? Part of me is glad for the days I take her in. I have the system of getting both of us ready at the same time down to a science. I even factor in time for a wardrobe change or a Starbucks stop if we manage to get out of the house in the first set of clothes! The drive to school? Is a good time! Alyssa dances and claps to music in the backseat and squeals with delight when we turn the corner and she can see her school out the side window. Couple that with the fact that you get to see a whole group of smiling kids who are excited to begin their day and it really is a swell way to start the morning.

At any rate, I returned home grateful for the positive beginnings of the day… despite nearly being blown away at the bus drop off area. This wind is out of control! I started working on a monster order which got pushed back due to the hectic nature of the last couple weeks. I’m so thankful for the invention of the Pandora app for my phone. I can blast music in my headphones and never worry about missing a call. Today that paid off! I got a phone call from Alyssa’s old physical therapist from early intervention. She had an AmTryke (http://lawtonambucs.org/Amtryke/amtrykes.htm) donated a while back and wanted to know if she could drop it off for Alyssa. Um. YES PLEASE!! What a huge and just astounding blessing. She wasn’t sure if Alyssa was quite big enough for this model buuuut the good news is that it will last her a good long while. Our hope is that after she builds the coordination she’ll have an easier time on her little pink trike as well!

She’ll have an easier time with it when she grows a couple of inches but the foot holsters do a pretty darn good job of keeping her feet in. We are going to order the wrist wraps so that her hands stay on the handles but she really enjoys it. The extra bonus is that you can lock the steering so it either only goes straight, turns 20 degrees each way, or has a full range of motion!

As if the day couldn’t get better after that little excitement… it did. I know I’ve said it too many times already but her teacher is just one of those “right people, right time” situations. We seriously could not have been blessed with someone more perfect to care for Alyssa when we are not. Her outlook, her genuine care, and her ability to SEE my daughter and not see IP… well it just makes my heart smile. Alyssa is rockin’ school despite being a bit more sleepy on her new meds and Mrs. L communicates her mini-successes with such enthusiasm that I can’t help but get excited for Alyssa. It’s the difference between thinking “Oh she’ll never do that, why bother trying?” and “She can’t do it now… but that doesn’t mean she won’t do it after practice!” We’ve been so fortunate to have family and friends that share that line of thinking with us…and I’m so pleased that her teacher is no exception. It’s odd to think that a few short months ago I was so terrified of what school would bring and now I know it is such a shining spot in my heart. I love that sometimes the things that we fear the most are the things that bring us the most joy when they actually happen. Life is funny that way!

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I hope that all the mothers in our lives got a chance to relax and enjoy the day. I know that is a pretty big hope and some were in the trenches because motherhood doesn’t always schedule vacations when the calendar says so. Neil was kind enough to take Alyssa to see family today and leave me to relax for a bit. While I had some time alone  I started thinking about what it means to be Alyssa’s mom.

It means that every day there is someone who’s wants and needs come before my own. It means that every day when I wake I am held accountable for my own life as well as hers. It means that the life I knew before she entered our lives is gone. It means waking up when someone else needs you to… not when you want to. It means putting things on the back burner when she needs to be snuggled. It means I have to be able to prioritize so many facets of life that I had never considered. It means that I will field questions, concerns, etc every day. It means that I will have the opportunity of dealing with the judgment of strangers through a small child’s eyes. It means… a lot of things. However, I think that so often people think that being Alyssa’s mom means being a mom is a more challenging job for me than for many. The reality is that is simply not the case. Being Alyssa’s mom is no more challenging than being the mother of any child. The difference is that our challenges are more visible to the outsider’s eye. The difference is that our challenges require attention apart from “typical.”

I have lived, breathed and walked the path of “you only get what you can handle” with my husband for … well as long as I’ve known him. We all get dealt a different hand and somehow we all play the hand we are dealt. There are days when we’d all like to fold and get up from the table but somehow we manage to stay in the game. I will not deny that some days being a mom is enough to make me run crying from the building… OK I won’t even deny that some days it has been enough to make me run crying from the building. The fact of the  matter is that nearly every mother feels that way at some point even if very few will admit it. We all get pushed to the edge, worn down, and otherwise made to feel that we need a break. It happens. To most all of us. The difference is what pushes us there. The things that push me there are, as I said prior, more visible to the outsider’s eye. The spitting up, the not keeping down meds, the fact my child cannot yet communicate her needs in words, etc. It is simple for someone to glance at a few moments of my life and think that I have it rough some days.

The sad part about it is that some people have it a whole lot harder but since their child is apparently “typical” their struggles are simpler for a stranger to overlook. The single mother juggling two kids and two jobs trying to land on her feet at the end of the day. Although, even she probably gets the “Oh. Honey. You do so much.” every once in a while. What about the stay-at-home mom of 4 who’s husband works 50 hours a week, expects an immaculate house, comes home upset if it isn’t, and believes that she should be able to handle all the housework herself since he provides for the family monetarily? What about the new mom who’s husband had to return to work and leave her with a colicky baby to work 12-hour shifts? What about the mom who has OCD and struggles daily chasing after the messes her child makes? One thing that each of these situations have in common is that their struggles are not visible to someone on the outside. Most of these moms can grin and bear it in public and no one will even notice that they are struggling to simply make it through the day. No one would ever assume that they were facing the challenges they were behind closed doors. It is easy to overlook how hard they have it.

Why am I going on huge tangents about imaginary mothering situations instead of blogging about my daughter’s day? Well, it’s just been on my mind lately. Our family’s problems and struggles are not any bigger than any other family. They are just different. Yes we have hard times but so does every family. People have told me many times that they don’t know how I do it… or even that they couldn’t do it. The reality? They could and they would… if they were in our position. Certainly we deal with more than our fair share of medical drama. Certainly we deal with more people trying to predict who our child will become. Certainly we deal with the struggle and worry that comes with affording all of the medical intervention. However, in trade for that we deal with far less of many other struggles of life. We are blessed in the fact that Neil is often home by 3 PM. I am blessed in the fact that my husband is grateful for the housework I do and willing to pick up the slack when I cannot keep up. We have two supportive families that were brought together when we married… something that very few people can say.

So, Alyssa isn’t typical…. nah…. that’s not even right. She’s not neurotypical but she’s pretty typical in a lot of ways.  She does things on her timeline. She does the things she is supposed to do even if they are not the things that I necessarily want her to do at that moment. What kid doesn’t? She inevitably creates more work for me at the exact moment that I cannot take more. What kid doesn’t? She does things her own way and in her own time but the reality is she’s much like any other three-year old. The ways that she is different from typical that come to my mind are probably not the ones at the forefront of other people’s minds. For me the things that make her different are the things that make her amazing. She has an inherent ability to search out the joy in every situation. She can make complete strangers smile without saying a word. She brings amazing and empowering people into my life that otherwise may have never entered it. My daughter? … lights up every room she enters with a light that shines from a place of true and honest excitement and happiness like I have never seen. Sure… she has her struggles. However, she has never lived a life different from the one she is living now. She didn’t have anything taken away and she gains things every day. She didn’t used to be able to walk, talk, jump and run. To her? She just hasn’t done it yet. Will she do it all? I have no idea! I’d like to say yes or even have the confidence to say no. However, I know all too well that it is not my place to say. There are neurotypical kids every day who have their abilities taken away from them. There are people who live to 30 and get in an accident which renders them unable to do the things they once did. I can guarantee that their pediatrician never warned their parents that would happen. In so many ways we are so blessed that we began Alyssa’s life with so many professionals having such low expectations. Why? Well, at this point… even they have given up guessing who she will become.

So, for me being Alyssa’s mom means I was given the gift of knowing I’m not in control from the beginning of motherhood. I have been given the gift of knowing from the start that each milestone is an amazing accomplishment. I get to spend every day with a child who ignored the fact that  people said she couldn’t and simply did. She has shown me that different does NOT mean bad. She has shown me a side of so many people that I wouldn’t have gotten to witness without her present. She taught me more before she spoke her first word than any one else could have taught me talking for a decade. So, for me? Being Alyssa’s mom means that I may never find the words to express how grateful I am that she is the person she is supposed to be instead of the person I wanted her to be. Some days are challenging… some are downright difficult and nearly unbearable.  The good always finds a way to outweigh the bad and I know with her smile in our lives… that will continue!

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Alyssa had a great weekend. She was a bit congested but for the most part seemed to be on the mend. Her fever was gone and we talked up school on Sunday night. We got up Monday morning and I gave her a bath, got her dressed, packed her supplies for school, and got her ready to go on the bus. Since I had given her meds a bit later than normal I decided to vent her G-tube prior to putting her on the bus. Her tummy felt warm so I grabbed the thermometer…fever. UGH! I felt so badly. She was so excited to be going to school and didn’t seem otherwise sick at all… aside from a bit of junky sinuses. However, I didn’t want to risk exposing the rest of her class just in case it was something else.

She stayed home and her spirits stayed up. She rested some but was otherwise in a great mood all day. I figured she’d be good to go back to school Tuesday because it was probably a tooth. We put her to bed Monday night and she slept soundly until about 2:30AM. She woke up coughing so I carted her and her pump down the hall figuring snuggle time would make it all better and we’d all get some rest. Yeah… wrong. HA! She felt pretty warm but was easy to soothe so I didn’t medicate hoping the fever would “do it’s job” and kick the tush of whatever was ailing her. Well, just as she started to doze back off she coughed, gagged, and spit up everywhere. OK, clean up, lay down, and try to get some sleep. Only when we layed down that time her arms were super chilly and she started shivering. I ran her a bath hoping it would stabilize her temp a bit but she was still shaking. As I was drying her off Neil said “You don’t think it’s a seizure do you?” … wow… umm it hadn’t even occurred to my sleep deprived self…great possibility. Either way seizing or shivering she was completely not herself. We couldn’t get her to laugh or even crack a smile. I’m not a big panicky and I avoid the hospital when possible, but her lack of response had me in anxiety mode. So, we loaded up and headed down to the ER. I’m so grateful that somehow when I’m freaking Neil is calm and when he is freaking I am calm. It makes it to where we manage to get out of the house with lightening speed even in situations like this. It only took a couple of minutes in the car for the shivers to stop and of course by the time we got there she was bouncing in her wheelchair like nothing had ever happened.

Luckily the ER was empty and we got taken back pretty quickly. Alyssa’s temp was at 105.4… lovely!  They medicated it and then went into the question phase. I think the highlight of the night was the nurse asking “Does she have any medical history?” … I laughed. I know I shouldn’t have, but it just happened. Really? I just pushed her into the room in a wheelchair. Do you not think she has any form of history? Heehee. After getting the most recent history the doc decided to treat her for a sinus infection. The thought is that since Alyssa doesn’t have the ability to clear her sinuses the stuff from last week probably sat and “festered” … for lack of a better word. We usually try to avoid antibiotics but it has been over a year and at this point she has obviously tried her darndest to fight whatever this is off by herself. She is a fighter and holy cow is she ever a trooper. At one point when she had a high fever in the past her pediatrician said something to the effect of “I wish I could video tape her and show people who want to medicate every fever.” Alyssa usually always runs high and you don’t even know until you see the reading and go “ACK!” when you see the number. I mean, this picture of her still managing to find a half a smile…

was with a sky-high fever after just being pinned for a good few minutes while they cathed her to get a urine sample. I swear she is made of pure awesome. I’m such a whiney baby when I’m sick… not her! LOL! Well, OK sometimes she goes whiney but really she’s an awesome kid even when she’s knocked down. It was amazing to me to see how incredibly her comprehension has gone up since the last time we were at the ER. When the nurse got close she looked at me for reassurance, made a nervous utterance, and calmed when I told her what we were going to do. It was… nice. Well, as nice as it could be. We’ve always been the parents who explain things that are going to happen but I’m grateful she’s understanding what we are saying now! Everyone that we dealt with last night (this morning?) was pleasant. The nurse that had to retake her temp was actually considerate enough to wait a bit after the pedialyte hit Alyssa’s system so she didn’t spit it all back up. It’s the little things that truly make hospital visits more bearable. We were in and out of the ER in under two hours… which is AH-mazing!

We got back home about 6AM and we all took a nap. I called Mrs. L and let her know Alyssa would probably be out all week. Such a bummer! Alyssa woke up fever free which was awesome. Neil had called in sick because  driving on next to no sleep is just simply not safe when you drive that far. It was an overall great day. We all just kind of relaxed. Alyssa fell asleep on the couch and napped while Neil and I watched Sherlock Holmes. Sure, we got next to nothing accomplished but it was nice to get some family time during the week. Alyssa and Neil are both sleeping now and I’m hopeful tonight will be more restful for everyone. 🙂 Alyssa cannot go to school until she hasn’t had a fever for two days so here’s hoping it stays away! I know she’s going to miss going when Summer vacation starts in a few weeks and it seems more of a bummer that she has to miss out on it now! Ah well, at least I don’t think Mrs. L is going to make her suffer through too much make-up work 😉 HAHA!!

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