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Archive for February, 2010

was an AWESOME first day!

There is a Garth Brooks song that I believe is titled “Unanswered Prayers” and it was in my head for the better part of the morning. I had dreamed about, prayed about, and planned my “future” daughter’s first day of school. The first day is one of those milestones that even when you are pregnant is so close you can *almost* taste it. You can see your child heading into class, glancing over their shoulder, and making sure you are still watching… even though they are trying to be tough. You can visualize driving away that first day with tear-stained cheeks knowing that your baby is growing into their own little person. It seems silly in comparison to other milestones, but it is definitely one that I *thought* I knew exactly how I wanted to go. I was wrong. It didn’t go that way at all. And yet? It was such an amazingly awesome day I could cry happy tears just thinking about it. So incredibly not what I had planned and yet somehow… God always knows how things should go better than I do.

We started today off early because we had to finish registration and get in to give the school nurse all of Alyssa’s emergency stuff prior to school beginning. Since I was spending the day at the school we just kind of walked around outside for a bit after that was wrapped up. I showed her the play areas, where the offices were, etc. Then, we headed into her class and off to the buses to pick up the other kids in her class. It was so funny as each of them walked off the bus because their little three and four-year old selves were so tiny compared to the size of the bus. We headed back to the classroom and began DEAR (Drop Everything And Read) time. Each of the kids were told about Alyssa joining their class. They’d pause for a second in anxious excitement that they got to tell her their name after DEAR was over, but aside from that there was nothing but enthusiasm about the books.

We went about the day singing songs, doing activities and learning the fine art of sharing. Alyssa made fast friends with one little girl in class. We’ll call her S because I don’t want to give out other people’s children’s names on the internet.  As they played together, or rather near each other, it was amazing to watch each of them react to the other. Alyssa was so excited about S setting up play icecream for the baby doll and prepping the table that she forgot for a second what she was “supposed to” do. She was sitting on a little plastic chair and grabbed onto the back of one of the rounded wooden chairs and PULLED HERSELF TO A STAND… like it was NOTHING. She stood there, I sat with my mouth agape, and she proclaimed “HI!” to C in the sweet way that only she does. She stood for about 10 seconds before it dawned on her that she was totally “flying without a net” so to speak. I still can’t get over the fact she did it like she had done it a thousand times. Such a seemingly “simple” thing… and yet such a HUGE leap. It’s amazing what the drive of peer pressure does to kids 😉 .

After finishing up inside play we headed outside. The weather was too perfect to miss. Her teacher, Mrs. L, had asked on Friday what we should do with Alyssa during recess. Usually the kids just do their thing but she didn’t want Alyssa to feel left out being in her chair.  Boy…the kids made sure that didn’t happen! As my sweet little girl sat in her wheelchair and watched with glee as 8 other kids bustled about her… one little boy figured out if he jumped from behind the little wall and roared… Alyssa roared with laughter. Then, as the other kids started running in the grass I decided I’d run and push Alyssa in her chair. She? Thought it was HILARIOUS to be able to keep up with the kids. One little girl brought her a dandelion from the grass and said so sweetly “I got you flower!” Another little girl decided that was a great idea and before I knew it there were five little kids running about picking every dandelion they could find and placing them on Alyssa’s lap. Each time they’d run toward her she’d squeal with delight. Each time they ran to get another flower she laughed a bit louder. As I stood there I was filled with joy. I quickly realized if the day had been filled with the things I thought I wanted… I would have never gotten a chance to feel that feeling. I would have missed out on the beauty that is eight preschoolers completely accepting difference… with no question… no explanation… no judgment. They took Alyssa for exactly who she was, welcomed her into their world, and found a way to include her.

Flowers

Waving to one of her classmates as they run to grab another flower.

The rest of the day went wonderfully… aside from a bit of a tug on a classmate’s shirt. However, I do suppose that’s par for the course with a three-year old. Alyssa burst into tears when the teacher said “Time to get ready to go home!” LOL! So, I think she had a great time. It is tiring being a school girl though.  She was passed out before we even made it back onto the main street and the two of us took a nap when we got home. We both made it through the day. A day completely different from what I had planned but it couldn’t possibly have been any better. So, tonight? I’ll make sure to say a special thank you to God for knowing what I needed better than I did. Tonight I am filled with the peace that I prayed so hard for just a few short weeks ago. Tonight? I have hope for the days to come 🙂 . Most importantly? Tonight I am so proud of my little girl for being exactly who she is. Without her I would have missed out on all of what made this day amazing. 🙂

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I realized yesterday that I goofed and scheduled Alyssa’s appointment with the pediatrician at the same time that we normally go to playgroup. It wound up being a blessing in disguise. As I headed out for the morning I phoned the school to see about getting Alyssa’s supplies set up with the school nurse. Holy wow. She was so kind. I wasn’t expecting mean, but just… well not that sweet. We talked for a bit and I gave her a brief overview of what she what Alyssa was going to need. I’ll be meeting her Tuesday (AKA first day of school!!!) morning prior to bringing Alyssa to class. Next up was the pediatrician’s office and that is almost always a visit that leaves my heart just a bit more full. Alyssa’s doctors have all been such huge blessings in our lives. It amazes me that after wrapping up a third year we still see the same doctors we did from the time she left the NICU. Some of them actually saw her in the NICU. I love that the staff at her pediatrician’s office knows my daughter. I love that without saying a word she is greeted with a huge “Hello miss Alyssa! How are you?!” You hear so many horror stories about uncaring doctors and yet somehow we have been wrapped in a blanket of truly caring people who also happen to carry medical degrees. 

At any rate it was a great appointment. My 25 pound daughter is… 35 inches tall. 35 inches?! That is totally only one ONE! away from three feet! Two more inches and she will be twice the length she was when I first held her. I cannot even believe it! What a thriving little lady. The pediatrician and I had a good talk. I love the fact that she is sassy, smart, and HONEST. I love her tell it like it is attitude. I had brought in a paper to get the handicap parking passes on the car. There are multiple options and the last one says “permanent condition.” She turned to me and said “What do YOU want me to check?” … I paused for a second “Permanent.” I know it is very very possible it isn’t permanent, but really? Do I want to deal with the DMV annually? LOL! She said she wasn’t sure and didn’t want to upset me. Today? There was no upsetting me. However, I did tell her I appreciated it because I knew the me that I was two weeks ago would have lost it crying in that little office. Today? I am at peace with the journey we are walking… and driving… and not having to fight for parking at an elementary school LOL! 

After we left the pediatrician we headed to the school to get Alyssa registered and ready to start. The receptionist said it was lunchtime but she wanted to call over to see if the teacher wanted to come meet us. I told her not to interrupt and we would meet her Tuesday but she called over anyways… thank goodness! Alyssa’s teacher? Salt of the Earth. GOOD people. You know the people you meet and when they walk into the room and you can feel the positive energy radiating off of them? Yeah. That! She got down to greet Alyssa and touched her kindly. Alyssa grinned at her and so it began… her first teacher student relationship! Her teacher walked us back to the room (pushing Alyssa’s chair I might add) and we actually met a few other teachers as well as the aides and the speech therapist. They were all eating lunch but were still game for the rattling off of info. 

It was nice. Lunch ended. Everyone left except for the two teachers and we chatted for quite a while. Alyssa has the most “going on” in the class. I was quite relieved that they were *excited* I wanted to come next week. I was concerned they’d think I was “that mom” who wasn’t ready to send my kid off to school (not that that’s a bad mom…just not the reason LOL!). Instead they were quite pleased. I figure the three day week next week will give us time to get all the questions out of the way. Make sure everyone is cozy and then be on our way. As I left her teacher and I shook hands and then she said something to the effect of “I’m going to hug you” and she did. I already adore her. What a huge huge gift it is to have someone who is EXCITED about your daughter being a part of their life from day one. So, Tuesday is the first big day and then the following Monday she’ll ride the bus for the first time! I can’t wait to see all the other kids in class. I know Alyssa is going to have a blast and now I’m pretty confident I will as well 😉 . 

The day wrapped up with a trip to the DMV, a nap/relaxing time, and family dinner & movie. Nothing too eventful but after the events of the morning and afternoon… I think we all needed a break. Alyssa just finally decided to end the day. I love the fact that she is happy until the moment she gets put in bed. Ha! She’s not a cranky from being sleepy sort of kid. Really never has been. I wish I could say the same for myself. HA! However, I will say that at the end of the day her sweet little feet poking out of her jammies? Still make me smile 🙂 Especially when they are poking out of jammies that a sweet friend of mine lovingly made for her own child and then passed on to Alyssa. 

ten little toes

 

 With that we wrapped up a busy day! I’m grateful for all we accomplished… and ready to head to bed! Nite nite…sleep tight 🙂

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To my birthday girl.

My sweet Alyssa,

I hardly even know where to begin. I cannot believe you are three today. On one hand it is a struggle to recall a time you were not in our lives, and on the other it seems like only yesterday we were prepared to welcome you into them. Two young parents anxious and excited to meet you, love you, and embrace you for exactly who you would become. I remember the moment you cried for the first time and the feeling of my own tears on my cheeks. I remember staring at you from a few feet away in complete awe that you were “ours.” As they wheeled me back to the room, and you went with your daddy, I called Grandma Renee to proclaim “She’s so beautiful.” It was so very very true. From the first moment I saw you… you were my perfect, beautiful, little girl.

That evening feels like only yesterday… and yet… it has been three years almost to the hour since you were born. Of course the days and weeks that followed that first day were nothing short of the hardest any of us has ever lived. However, you started out early showing us exactly what it meant to be strong, to prove people wrong, and to be exactly who you needed to be. You taught me more in your first weeks of life than I could have learned in years of studying. You showed me the good in people in a world that we all to often get to see nothing but the bad. From the moment you were born my whole life changed for the better… even in the moments it seemed like a nightmare. You drew me closer to my friends and led me to God. I will forever be grateful for that. Some parts of it have been a challenge but somehow at the end of the day you make the world make sense… you make it a better place.

Alyssa as you enter your third year I cannot help but reflect on your second. It seems like only yesterday you were picking out a cupcake from the case to demolish upon returning home. I can still smell the chocolate icing and remember how fast you turned that perfect puppy cupcake into nothing but chocolate crumbs. I’ll also always remember that getting buttercream off of a toddler is akin to mixing oil and water… nearly impossible. LOL. As you entered you second year you were strong, full of life, and ready for everything the world had to bring. However, the first months were filled with battle. You and I struggled will against will for months. All I wanted was for you to be nourished and all you wanted was to never eat. After finding out that you were suffering from eosinophilic esophagitis (EE) we thought we had finally found the answer to our feeding issues. We were, as we usually are when it comes to predicting what you will do, wrong! Even after correcting what seemed to be ailing you your strong will still proved to be equally matched with mine. Finally, you won. Your daddy and I made the hardest decision of our lives. We got you a g-tube. I prayed for weeks, asked everyone who had experience that would talk to me what to do, and finally we came to the conclusion that the decision had to be made. It was petrifying, because it wasn’t “necessary.” It could have waited. However, we all knew that although not necessary… it would be life changing. Boy, we were right on that one.

I’ll never forget watching you become nearly instantaneously clearer. It was as if you were finally getting everything you needed to be the person  you had wanted to be for the months prior. I remember telling someone “She’s still her, but it’s like all the ‘hard’ parts are gone.” Your best attitude was on the table. You and I no longer had to battle wills daily because you would sit happily to play while being fed. I don’t know who it healed more… you or me. Your hair brightened, your seizures diminished, you learned to clap, you were just… nourished. Just what we had wanted from the beginning! To give you the opportunity to thrive every day. I cannot believe that it has been seven months since the tube was placed. In the seven months prior to it being placed you maintained the exact.same.weight. In the seven months since you have gained five pounds and four ounces!! That is HUGE. Couple that with growing a few inches and shoe sizes. Alyssa…it is amazing to watch you thrive.

It is not just your size that has changed. When I think about all that you conquered this last year… you have come so far. I remember a time when we struggled to get you to sit for even a moment and now there are times you will sit for nearly a half an hour. I remember a time when you didn’t understand the world around you and now you can pick your daddy out of a crowded room. I remember a time when you wanted to go play with other kids but had no way to get there and now you crawl nearly as fast as most kids walk. I remember a time when the second you realized someone wasn’t holding on you’d fall over and now you will stand against something to play. You are growing and changing every day and I don’t ever want to forget how far you have come.

You amaze me. You walk through every day with a grace I can only pray to have one day. You conquer your difference with a smile on your face and in your heart. You teach me every day what it is to love unconditionally. There are days when I simply don’t feel that I have the energy to make it through. Those are the days you cling to me, you make me slow down, and you snuggle into me in a way that only you can. You? bring balance to my life.

Three years ago today if someone had told me of the path we were going to walk… I would have never believed them. Three years ago today… your father and I would have never had the strength to make it to this day. I will forever be grateful that your tiny little body was filled with one of the strongest souls I have ever encountered. You show me every day what it is to work hard for what you desire. You show me every.single.day what it is to be happy to be exactly who you are. There was so much I had in my mind that I wanted to teach my future daughter and instead I am the one who is educated every day. In three years you have taught me things that I would have never learned without you.

Parts of our journey together have been hard. Your third year was no exception. However, when I stop to think of all the people who are a part of our lives that would not be if you were “typical” it becomes a bit easier. You have brought people into our lives that fill our cup every time we see them. People that we would have never met without you in our lives. You have shown people that when they set the bar high… you will find a way to reach it.  You stop at nothing to prove everyone wrong for all the right reasons. You don’t have many words but I love to watch strangers interact with you. I love to watch a cashier who is just going about her day brighten up at the sight of your smile. I love to watch you clap proudly when another child succeeds. Seriously, I cannot tell you how proud I am to call you my daughter.

That era of two is over and now we are on to the big three. The last few weeks have been a challenge for so many reasons. I would have never expected you to be the person you are today when I envisioned your third birthday. However, I would never change exactly who you are. You are more amazing than I could have ever anticipated when I envisioned “normal.” As we sat around the table last week planning out your year to come all I could do was nod to everything they said about what your goals and outcomes were. I know full well no matter what they write on a piece of paper… you are going to do exactly what you need to do every day. It may not be what the rest of us want you to do… but it will be exactly what you need to do. I can’t help but chuckle to myself as they so “knowingly” plan out where you will go over the course of the next twelve months. All I can think is “Ha! You’ve obviously not dealt with my child much yet.” They will learn soon enough.

I am excited about your birthday but admittedly more excited about you starting school. I was sad for a few minutes about the fact that we had to wrap up things with early intervention and head to a new group of people for school. Then, the other day, it hit me… it needs to happen. You, my sweet little girl, need to show these people what determination is. It floored me a little to hear a speech therapist who had only seen you for an hour say “she tries SO hard.” For someone who had only seen a glimpse of you to see so much of you… it will forever amaze me how you wiggle your way into people’s lives. School is going to be a whole new setting for you but I know it is is going to be one in which you thrive. It is going to give you so much that we simply cannot give you by keeping you home. You need the room to roam. You need the space to carve your place. I have watched you make your place in playgroup with amazement. It is such a humbling experience to watch you etch out your place in a group without speaking a word or taking a step. It is such an empowering experience to watch you be confident that you are worth their time, that you will be a good friend, and that you are exactly who you are and that is all you need to be!

Alyssa, I know this is not the most concise letter I have ever written. I think I could fill the pages of a book with all that I would like to tell you about your first three years. I could have never envisioned this path but I am so grateful that you placed us on it. You are my light, my strength, my educator, and my hope. You give me belief that one person can change the world. You have surely changed mine.  This year will be your year. This year is the year that you get to be independent. This year will be great because YOU will make it that way. There will be days when you need a break and feel like the bar is just too high to reach. Those will be the days daddy and I are still around to lift you up to that bar. There will be days that you just want to break down and do nothing. Those will be the days daddy and I help to do it for you. We are still here and still willing to help when you need us, but this year? Is your time to shine a light all your own for a whole new group of people.  This year? You will show a whole new set of people exactly who you are. This year? You will be exactly who you have been all along… every.single.day. There will be days when we are worn thin and things seem unmanageable, but I know the three of us will finish out each day as a family with peace in our hearts knowing we are exactly who we need to be. Thank you for taking the time to teach us that. Seriously.

I suppose just like every year… every letter needs to come to an end. However, I know full well that although another year has ended… your journey is just beginning. Thank you for letting your father and me walk it with you every day. I promise you now that I will do my best every day to be exactly the mother you need me to be… even if some days it isn’t the mother you want me to be 😉 . I love you little lady and I could not have dreamed up a more perfect person to be our daughter if I slept for an eternity. I will forever be thankful for God knowing us better than we knew ourselves.  He’s got big plans for you and I feel truly blessed that he chose us to walk this journey with you… even on the hardest of days that feeling will never change. Thank you for being exactly who you are every day. Thank you for being who you are and for being patient and loving while I learned to love you for exactly who you are. I will forever be grateful for the ways that you changed my heart, my priorities, and my life. You are my light. Thank you for shining on even the darkest of days. I love you. Forever.

Love,

Mommy

The concept of balance. I did not want to publish the other letter without having this one up as well. I wrote most of this one today. As you can tell… God answers prayers. My heart is slowly refilling with peace. I have not shed a tear today. That is a first for many days. My little girl is who she needs to be …and to be honest? Who we need her to be. I could have never ever imagined that this would be the journey we would go on together. However, at the end of the day I would not give back a moment of it. I have had my life changed by the people who have come into my life through the course of this last three years. I have drawn closer to people who have been in my life for years prior. The reality is… IP is a part of Alyssa… and Alyssa is an amazing part of the world. I know that through Alyssa the education about IP will grow. I know that through Alyssa more and more doctors know what IP is. I know that this little girl has a huge purpose. I also know that this was the first year I worked THROUGH my issues with IP instead of around them. I feel a sense of peace in this moment that I haven’t in a very long time. Thank you Lord for giving me the strength I need to make it to the end of each day… even if I have to borrow it from the people in my life some days… thank you to those who lend it out when it is needed. You may never know how much it helps.

Finally, I have had a few people request info about IP over the last couple weeks. I will take the time to put up a post just about IP in the coming weeks. Google is a scary scary land of overblown stories and terrifying recounts. The doctor that diagnosed Alyssa told me that I was welcome to Google… but all I would get would be worst case scenarios 😉 LOL! So, give me a bit to get her settled in school, birthday partied up, and I will write about IP 🙂 . Thank you so much for being a part of our lives 🙂

P.S. Pics will be around in a few days. I accidentally sent the camera charger cord home with early intervention instead of the light box cord LOL!! Oh…and the grammar on this probably sucks a little more than usual 😉 I will probably go reread it when things calm a bit! HA!

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I  am posting this for a few reasons and I think it is important that I preface it lest anyone think I have taken a leap off the deep end. This is something that I wrote a few weeks ago with the intent of keeping quite private. Just between myself, the computer screen, and God. I printed it, I burned it, and I released it. Then, as I continued to be prayerful about it (asking the Lord to fill that place of anger with peace and acceptance)… I felt that wasn’t fair. It isn’t fair of me to post on a blog titled “Special Needs…Normal Desires” and not share the special needs part. It isn’t fair that so many times in our darkest hours of parenting we are made to feel that we are inadequate. We are made to feel that everyone else is “managing” better than us.

If you talk to me in real life often…you will most likely hear me say that we as mothers set up one another for failure. Everyone acts as if they are going through everything with a smile on their face and in their heart. Sometimes? you HAVE to lose it … in order to find a new balance. Sometimes? you HAVE to be angry, to ask for help, and break down… in order to put the pieces back together. For me? That time usually comes about this time of year (although in minor doses throughout the year) because Alyssa’s birthday approaches and it is a time of evaluation. Whether I want it to be or not. Each year with a special needs child you wind up answering five hundred…and ten … questions about what they are doing, what they aren’t doing and what they should be doing. As a special needs parent? You do it. You do it because you know that the answers to those questions are what provide your child with each and every opportunity you can possibly get. You WANT that. You WANT to provide your child (special needs or not) with each and every opportunity that you can.

At any rate, the letter that follows is raw. The letter is to IP. I know through my on-line time that I have encountered special needs parents who just struggle to cope with the anger they feel toward the disorder their child suffers. It is NOT resentment or anger toward the child. I LOVE my daughter (and the letter to her will follow in a separate post). However, I can love everything she is a bit easier after “releasing” this into words. This is the first time that a birthday has been only a few days away and I have not felt like puking about it ;) . Like I said, I intended to keep this private, but I am hoping through sharing it that it will help at least one person realize that what they are feeling is OK. I have been so blessed to have friends who have opened their mouths and their hearts and been honest in their feelings. I have had friends that have gotten raw with me. I know full well that not everyone has that blessing in their life. So… well… hopefully this helps. Someone.

Dear IP,

I feel the need to write you today. Well, to be completely honest? This has been a long time coming. This is something that should have been said from the beginning. However, I suppose that I needed time to reach a point where I could truly tell you how I feel. I don’t know that I am even there yet, but I do know that your presence in my life has begun to overshadow my relationship with my daughter and that is not an OK thing for either of us. I know that you cannot leave. I know that we have to find a way to live together, but the space you are currently occupying in my heart needs to be vacated. I understand that you think you belong here. I even understand that you need to be here. However, there are some things you need to hear if you are going to be a part of our lives in a functional way instead of continuing down this path of…well I don’t know what to call it… all I know is that this is the end of that road.

Let me cut to the chase here… I hate you. I *HATE* you. I do not use the word hate lightly anymore after learning what weight it carries in certain people’s vocabularies. So, please, know that I mean it. I hate you for everything you do to my family every.single.day. I hate that you make things that should be easy a challenge. I HATE that you have found a place in our lives. I mostly hate the fact that you came with zero warning. That you walked into our lives without asking permission, without giving us warning, and without giving the people in our lives the knowledge to know how to handle you being around. I hate that you have found a place in my heart that is dark. I hate you. I don’t like myself for it…but… it is what it is.

You have made me see things in myself that I never wanted to see. You have filled me with rage in ways that I never knew I could be filled. You? Shattered a bit of my world. For that…well I’m still working on forgiving you. You make days that should be easy … a challenge. You have the ability to ruin a day in a way that should never happen. I just don’t get how you think it is OK to take over so much of a person’s day. You made it a challenge for me to find a way to accept my own child! You took away hopes and dreams that I had had for decades … in an instant… and you? did it with no remorse. You make things a challenge. You fill life with appointments, specialists, etc. You do it without even considering the fact that it puts a strain on my family emotionally, mentally, and financially.

I know that this level of hate isn’t healthy. I know that seeing you fill my daughter every day and resenting you…isn’t healthy. I know that if I don’t tell you this now and get it “out of my system” that it will grow into an even bigger storm over the sunshine in my life. I refuse to give you that power any longer. I’m taking the power back. I realize that it isn’t fair to hate you for everything you are, everything you do, and everything you prevent from happening. I want to get past that. I want to get to a place where I accept the fact that you are a part of our lives, a part of my daughter, and you are not here to overshadow the good in our lives. I think in order to get there there is some stuff I have to say “out-loud.”

First, did you have to try to hide? I mean, I am grateful for the first hours that you completely hid…but after that? Did you HAVE to make the first five weeks of my daughter’s life a roller-coaster that no one should have to ride? Did you have to make me unable to hold my daughter? Unable to touch her without gloves because no one knew for certain if it was some random bacteria that could be spread. Unable to have my family at my side when I was at hers? Did you..really? Did you have to make us worry and live in fear? Why? Why couldn’t you have just admitted you were here, given the first doctor that saw her the knowledge to say “Oh, it’s IP!” Instead of making us walk through those weeks numb. Instead of making us wonder what the next day would bring. Why? Why couldn’t you have just made it the easiest it could have been.

Second, do you have to be such a broad spectrum? Do you have to leave us continually wondering what the forecast is? I just don’t get the fact that some days you are next to nonexistent and others I feel like you are all that is around. I know it isn’t yours to tell and that only God knows what you have on the agenda for the days, months, years to follow. Yet? Somehow? It just doesn’t seem right that every action, success, etc… is hindered by YOU.

Third… screw you. No, no. Really. Screw you. You took a piece of me. You took a piece of my heart that I didn’t want to give. You filled my brain with information I NEVER wanted to know. YOU took away my ability to just “be.” You took away so much that I didn’t even know I had. You forced me to mourn the loss of a person I will never meet. You robbed me of so many things. You robbed my daughter of so many things. You … I just wish you didn’t exist. I wish I could make you not a part of our lives… but I am not willing to sacrifice my daughter to make that happen. YOU are the problem here but somehow SHE has the ability to put you in your place and walk with you with grace that I could only ever PRAY to have.

Fourth, you fill life with QUESTIONS. Oh.my.goodness. THE QUESTIONS! Could you have AT LEAST given me the frickin answers?! Thankfully God has given me the grace most days to handle the answers, but really… the questions. The fact that I get filled with dread as each of my daughter’s birthdays approaches because I KNOW that birthdays bring evaluations, reassignment’s, and questions!! The “when will she walk?” “will she talk?” “how was her appointment?” “what did the doctor say?” “are you really OK?” “when is her next appointment?” “what is the plan?” “when is ____ happening?” “what’s that on her skin?” “isn’t she hungry?” “how come she’s not gaining weight?” “is her head gonna grow?” and on and on and on and OOOOOOONNNNNNNN. Most days? I can handle it. Other days? I want to scream “GO ASK SOMEONE ELSE!” … I know that isn’t fair. I know that because you are here my life will forever be filled with questions I don’t want to have the answers for. I will just continue to pray for the grace to answer them, for the knowledge to educate people on who you are, and for the patience and calmness of heart to do it gently without becoming offended. Why? Because I know that most people ask them with a good heart… that you are the one who makes the questions hard to answer…not them. They just want to know who YOU are. What YOU are doing to OUR lives. At this point…I’m not sure even *I* know anymore.

I know that we were chosen to raise this little girl with you in her life because we *can* do it, but some days… I JUST DON’T *WANT* to do it…I JUST WANT YOU GONE! You and every question that comes with you. You and every comment from a stranger that comes with you. You and your snide way of sneaking into every aspect of life. You and your mysterious ways. You and your bringing that look of pity that strangers get. I hate that look. That look that you NEVER see until your child is “different.” You brought it into our lives! F*ck you for that. F*ck you very very much. I could have lived to my last of days NEVER knowing that look. NEVER having a stranger ask me “is she ok?” as my child sits giggling. Um… YES! She’s fine. Thank you very much. You and your way of making people see YOU first instead of my daughter sometimes. You suck! My daughter? She’s awesome. SHE should be seen before you. At.All.Times. So, tone it down a bit. PLEASE. I BEG you. TAKE A BACK SEAT. Let her be who she is. Let yourself be a part of that, but LET HER BE! Let her THRIVE. Let her continue to OVERCOME every obstacle you lay in front of her. PLEASE PLEASE do NOT become bigger. PLEASE ride shotgun. She doesn’t deserve for you to be the driver. She is strong enough to be your leader. Please let her lead. I BEG of you. Let her triumph. LET her. ALLOW her that. Allow her to be the person who helps the world to see that you are NOT all bad. Allow her to be the best person she can possibly be with you in her life. PLEASE. I ask you this with every.fiber.of.my.being. PLEASE let her continue to put you second. I will do my part to see you second if you continue to let her shine. PLEASE. I cannot walk through this life with YOU driving. Let her be exactly who she wants to be. Please.

Finally, as much as it pains me? As much as I never ever ever wanted to have to tell you this? Thank you. Yes. I said it. Thank you. Even typing it makes my hands hurt a bit. You see, I don’t want to thank you. I don’t want to come to terms with the fact that your presence is something to be thankful for. However, I need to thank you. You see, my husband and I? We had it all figured out. We had this happy little life planned. We did everything “right.” We made a safe place to bring a new member to our family. We opened a place in each of our hearts. We? Were ready…. for normal…for typical. We? were prepared! Then? We got the wind knocked out of our sails. Doesn’t seem right to be thankful for that? does it?

The fact of the matter is that without you, I wouldn’t be me, my husband wouldn’t be him, and most importantly my daughter wouldn’t be her. Before you walked into our lives there was quite a bit of cynicism that filled our hearts. What is the world coming to? No one cares about any one but themself…etc..etc. Then? You flipped our world upside down. You managed to bring me literally bawling to my knees crying. That is something I had never before done. You showed me that strangers could open their hearts to a family, that God was worth the time to pray, and that my husband and I could conquer anything together… with our daughter in tow and God on our side. So, for that? I will thank you.

I also want to take this time to tell you I am going to do my best to get to a place of acceptance. I don’t want to hate you. Sure, you have made life more of a challenge, but you have also brought people and emotions into my life that wouldn’t be here without you. That is the main purpose for this letter. I’m letting go of the anger. I’m letting go of the person that I thought my daughter would be without you in her life. I realize now that although you hold her back from *my* dreams… the two of you will carve a path together. I trust you to let her lead the way and follow her along that path. I am moving toward a place where I know that you are with her to make her exactly who she is, who she needs to be, and who God made her to be. It will take time but each day will bring me a little closer. Please give me that time. Please understand that when I get mad at you… I’m still grateful for the blessings you bring. Please know that when I cry because you are around… I wouldn’t change the person that you make my daughter. Most importantly? Please know that I’m grateful you’ve given me the ability to reach belief in the Lord, because I know I couldn’t make it through one day of this without Him. I know that is a fact. I know that my belief would not be as strong without you around. Thank you for that. Thank you for showing me the good in people even if it means that sometimes I have to see more of the bad in myself. Thank you for bringing a balance to my life that I couldn’t have found without you. Thank you for giving me the time to grieve and to reach a place where I could tell you how I feel.

Thank you for listening,

Jessica

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and today was filled with them. It was a mostly uneventful day aside from the high emotions of it. I broke down today, but not over Alyssa’s birthday. Just over the attempt to juggle and get every thing in order. Finally, the day wound up better off when I said “forget it” and just let it go how it was supposed to… not necessarily how I wanted it to. The sewing area is still a mess, orders still need to be filled, etc…but we had a relaxing evening. At any rate… back to the beginning… or the lasts as it were…

We had her final early intervention appointments today. We saw assistive technologies, physical therapy, and her service coordinator. It was hard. I must have said 100 times in my head “this is not goodbye” because I know darn well I can drive down there with my little girl and see them if I need to. We were so blessed with every person that we encountered through early intervention. They embraced us for who we are. They put up with my sarcasm (and *gasp* even joined in sometimes 😉 ). The loved my daughter for exactly who she is. Can you ask for more than that? It is such a wonderful thing to have people surround your daughter (and your family) that rejoice just as you do about what seem to be “small” things. Clapping in complete rejoice as she babbles. Fighting back tears as she helps the parachute go up and down in play group for the first time from her wheelchair. Overall, they helped me to not forget that the little things add up to the big things. You can’t learn to walk before you learn to stand, you can’t learn to talk before you learn to make a sound, and you can’t take any of it for granted. I am so grateful that they were all there as a reminder.

Alyssa’s picture hangs on the wall at early intervention to show how one of the assistive tech devices works. They asked today if they could leave it up. Of course! I love that my sweet girl’s smile will keep the hall lit up.  I love that she’ll still be “with them” in a way. They also brought her a birthday present. Quite a comical one at that. They know full well I struggle with toys that make noise and I was pretty excited to hand a pile of them back… ha! Well, Alyssa now has an adorable toy that makes a ton of noise. However, I do have to admit that it is a pretty awesome toy. They also got her a ton of little hair things so that she can have her new haircut all ‘done up.’ It was awesome to have a few good laughs during our lasts appointments. It made the “lasts” of today a bit easier to bear. Like I kept telling myself “It isn’t goodbye.” Even Alyssa wouldn’t wave as they left today. She clenched her hands tight to one another as they waved enthusiastically. She wasn’t ready to say goodbye either.

She is however ready for the next chapter. She is ready for school. She is going to love it. We just had to wrap up the lasts of the lasts and get to the firsts. She’s got a lot of firsts coming. I’m so grateful for this last week. I’m so grateful for all of the healing and soul searching I have done. It wasn’t easy. At all. For me… and most certainly for Neil… God bless him. Seriously. This week was one of the biggest roller coasters I’ve ridden in a while, but as I sit an hour away from her third birthday? I’m ready. I’m ready for it…or as ready as I’ll ever be. She’s so full of light and love…I can’t wait to see what she conquers this year. It’s going to be great 🙂 I’m going to have a THREE-YEAR-OLD. Holy guacamole!

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and sometimes? That is a quite awesome turn of events. Alyssa’s last meeting before starting school was today. It was the day that was putting more stress in my heart than anything else. I knew we’d make it through. I was grateful Neil was off to walk through it with us. However, it was still just a point of stress. It meant setting up her first Individualized Education Program (IEP) for school. I did not have worry in my heart that she would qualify for services. Just… well about how the meeting would go.

Alyssa got up at about seven this morning and I was committed to making it a peaceful wake up for both of us. I grabbed her out of bed and snuggled with her on the spare mattress in her room. I read a couple of the books that my mom managed to save from when I was little. Then, I sat in the rocker and talked to her. It’s one of the big challenges of having an almost three-year-old who is mostly non-verbal and is mostly content… to remember to tell them what is going on. I told her it was a big day and that we were going to see a lot of the people who had worked with her a few weeks ago. I told her I was so proud that she was getting so big. Mostly? I wanted to hear the words outloud for myself. I wanted her to hear them too, but I think it helped me more. However, nothing is sweeter than when you ask your child “Do you know mommy loves you very much?” and they snuggle into you, pull away, and then come in for a big kiss. I suppose the answer is a definitive yes.

We headed downstairs and after a bit Neil came down as well. I was just feeling exhausted. I think when your mind is reeling for days about something it manages to infiltrate even your sleep time. I spoke to my mom for a bit. Did you know my mom has fasted coffee for weeks to be prayerful about my sanity and Alyssa’s success in school? Seriously… she gave up something that fills her with sanity… for mine. I so badly want to be her when I grow up. At any rate, she told me she couldn’t have prayed any harder and that it was going to go just fine. With that… I dozed off on the couch and Neil let me nap for a good chunk of the morning. I woke up feeling a bit more ready to face the onslaught that was to come. We got ready, packed Alyssa’s stuff, and headed out. Alyssa doesn’t have to go to IEP appointments, but anytime that she doesn’t have to be somewhere… I kind of like her to be. It always means that it is a time people will be rattling off “facts” about her and I start to feel kind of like she’s not a person anymore. I think having her there? Helps remind each of us that she’s a smiley bright-eyed girl.

Few things in life are more intimidating than walking into a room with 8 people who are there for no other purpose than to analyze your child. One of them was her service coordinator from early intervention who I met the very first day I took her to early intervention (when she was just barely a year old) and she has been with us ever since. I was grateful for her presence. At any rate… we sat down, settled in, and the lists began. Nurse first. Just a rattle off of all the stuff that Alyssa has been through (thank God the cliff notes version!) and then on to each of the specialists. I was surprised. I expected a pretty… hmm… I don’t know. I expected them to not be quite so gleeful about who Alyssa is. I know she’s awesome. However, I was pleasantly surprised that they somehow saw HER through all the verbage on the paper.

The speech therapist said she was at the comprehension level of an 11 month old with the verbal level of an 8 month old. My reply? “Seriously? We’ll take that to the bank!” This little girl no one expected to make it to a 3 month level… ha! showed them! Everyone chuckled. She was the fourth person to talk and I think by this point everyone had realized that Neil, Alyssa, and I were all there to simply… get what Alyssa needed. I don’t mind what they have to label her (moderately mentally retarded if you need to know 😉 ) as long as she continues to get services that give her the best quality of life possible. I loved when the psychologist said something about her ranking as moderately mentally retarded and I said “OK.” and nodded. The reality? I just.don’t.care. Maybe I should, but labels are just that… labels. Does it change the fact that earlier this morning that little girl knew I loved her? Nope. Does it change the fact that as I sat behind Neil to give her a feed she called out and laughed like crazy when he turned around? NOPE! She is still her… all it changes? Is that she gets to be in a class with a maximum of 10 other kids instead of 24! That? IS AWESOME.

As we wrapped up the “recap” and established that Alyssa would of course be receiving services… one of the first pages had a couple brief paragraphs. The first was just to kind of give a quick overview of who Alyssa is and what she is “about.” One of the lines said “Alyssa has a very supportive family and is a happy and playful little girl.” That? was the *ONLY* time I came close to tears during the meeting. This woman has met us a total of three times. In a total of maybe three hours… she saw my daughter for exactly who she is… and where she comes from. I wanted to squeeze her for getting it… for understanding… for seeing! Then we set up what was important to us. Safety of course was at the top of the list. Beyond that? We wanted Alyssa to have a happy and POSITIVE learning environment. I want her to feel empowered going to school. I think I actually told the woman that for me what was most important was that people embraced Alyssa for who she is… not who they want her to be. Yes… of course I want her to reach all of our “goals,” but more importantly for me is that she feels confident in her environment. I know she will 🙂 .

We finished setting up outcomes with regards to motor skills, self-help, feeding, etc. Everything from learning to help dress herself to putting a puzzle together. We find out within the next couple days what school she is going to. She could start on her birthday but we are going to hold off and start her on Tuesday the 16th. I cannot wait for her to get a chance to be surrounded by kids every day. She’s going to have a blast! I cannot wait for her to get a chance to be surrounded by people that are not family every day. I know it will help her flourish. I also cannot wait for her to get a chance to show that many more people what a force she is to be reckoned with. She is an amazing little girl. It’d be selfish of me to keep her at home! I cannot believe that I am going to have a school bus riding, school attending, three-year old in a matter of days. People always tell you the days drag but the years fly by… I think it’s impossible to believe until you actually live it 🙂

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Another year approaches…

We are only a few days from another birthday. I have a few posts that I’ll put up over the next few days. I’m trying to work up the confidence and serenity to post one of them. I know it needs to be said. It will come. Last night was a rough night. I wish I could say birthdays were a time of rejoice in my heart. Each year a bit more of it is exciting. Each year I am grateful that we get to celebrate another year. I cannot imagine a life without this shining star in it. Each day with her is a blessing. It’s easy to lose sight of how much of a blessing it truly is when you get caught up in the appointments and day-to-day. The reality is that is what makes birthdays a bit of a challenge. Knowing that all the evaluation will come.

I woke up this morning with peace in my heart. Not my whole heart but the better part of it. When I woke up to the sound of my little family crawling in bed with me to awaken me from a good night sleep (Sundays my wonderful husband lets me sleep in a bit… it’s a great way to start the day). The sound of her giggling with her daddy is healing to any struggling soul. She loves that man in a way no one else ever will. I love him and I could have never imagined anyone else could love him more than I do… I was wrong. The three of us snuggled and giggled in bed for a bit this morning. It was a bit of that ‘typical’ I somehow still try to search out.

We headed downstairs to get her meds, a bit of breakfast, and plot out the rest of the day. Neil is off until Thursday so that we can get through all the scheduling for school, final appointments with early intervention, and all the other “stuff” together. Plus, what little girl doesn’t want her daddy home for her birthday? I’ve wanted to cut her hair for a few weeks but doing it alone is akin to trimming the mane on a wild pony. So, today seemed like a good day. Daddy entertained her whilst I styled her hair. It may sound funny but somehow giving her a “big girl” style helps me feel a bit more at ease. I am so grateful for so many of the people in her life. They treat her like a kid and not a baby. Alyssa is very much a nearly three-year old mentally in many ways, but due to her size and motor skills sometimes it is hard for strangers to see. I think keeping her overall appearance true to age helps remind even me that she’s no baby 😉 .

At any rate, last time I cut her hair I regretted not giving her bangs. Today? Oh I love them. Somehow they are so *her* and so… a fresh new look. It almost made me want to chop off my hair. Almost. I cut layers too! It’s amazing the level of volume it gave her seemingly fine hair. Blah blah… pictures are worth a thousand words. Right?

Making sure dad doesn't get too far away...

This one is a good front shot. Plus, a shot of the wheelchair I have yet to post a blog about and her new leg braces (thank you Shriner’s). How cool is her chair? Purple. Yes. Tiny. Yes. Awesome. Yes!

It’s hard to believe just a few days past 3 years ago my sweet baby had a mohawk from having a central line placed… and now? I think I’ve probably cut a total of 6 inches off her hair over the course of a few cuts. IP can affect hair and make it wirey and hard to manage. Alyssa has the softest honey brown hair. I don’t think I have ever taken her to the pediatrician without her making a comment on how much she loves the color of Alyssa’s hair. I can’t say I blame her.

Well, we decided that we’d get a few tasks handled today. Alyssa needed shoes that fit comfortably over her new braces. Her shoe size without them is a 5 and with her hand-me-down braces she was wearing an 8. These one’s put her squarely in a 6.5. The great part is that means the shoes should fit until her feet catch up to the braces. The better part? Payless had the most perfect toy ever. I want to build something this same height. We’ve been putting her legs in full length braces for about 30 minutes a day to stretch her legs and then after those minutes we’ve had her stand up in them and play by the couch. She’s gained so much confidence in assisted standing over the last couple weeks. Again… pictures are worth a thousand words…

"Dad. Check this out!"

She’s pretty amazing if you ask me. We got her the shoes she’s wearing in this pic. They are the most adorable little brown mary janes. Not overly dressy but enough to look fancy if they need to. I was not completely sold on them until she took solid steps in them (with me holding her hands of course) to get to that toy. It amazes me how adaptive human beings are. This sweet little girl without the ankle strength to take steps… and yet… give her braces and a sturdy pair of shoes? She’ll figure it out. Of course fancy brown shoes don’t work for every occasion so we got her a pair of sneakers…that her mother wishes they made in her size… LOL!

oh the pink sparkles... love!

With that our afternoon drew to a close, she took a nap, we watched a movie (and I *might* have taken a nap too), and then we all spent the evening together. It was nice. A relaxing day that I think all of us needed. I’ll call it “calm before the storm.” Ha! It was nice though. That bit of “typical” that calms each of us a bit… even her!

This week is going to be a whirlwind… but I know that she is going to love school and love being three. Yes, I am almost to the point of being able to smile about the fact her birthday is coming. She’s going to rock three… just like she has rocked every other year she has come through. I can’t wait to watch her blossom into a pre-schooler. My mind is ready and my heart gets a bit closer each day. Thanks to everyone who has held my hand, listened to my banter, told me what I needed to hear, reminded me that the good always outweighs the bad, reminded me that God put her with us for a bigger reason than we realize  and well… just been there. You may never understand how much knowing that there are people thinking fondly of our daughter every day truly helps to make it to the end of the more difficult days. So, really… thank you 🙂

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