Choices...

I'm not even sure how to begin about how overwhelming this week was! Not only did we find out that Carter got accepted at West Gate school, but we got to tour it too. At the meeting to find out which school he was being placed in and going over the IEP plan for his school year, we sat and listened to 13 people discuss their findings during their assessment. This was devastating and overwhelming for my husband and I. On a daily basis, we only deal with what is in front of us; we do not dwell on the past or the entire picture as a whole. We look at our son in all of his perfection and we only see a little boy who is happy, loved and smart. But in this meeting, we heard his life's story in the words of professionals. All of our realities were painted into a picture so blinding, that my eyes hurt. Half way through, I had to shut down. I watched my husband playing with Carter on the floor with one of his therapists and blocked out the words around me. On my son's face was nothing but smiles and happiness. He was unaffected by the terms being used and he didn't care what disabilities they categorized him into. I had to grab that happiness and hold on tight in order to make it through. I only allowed myself to answer the yes and no questions that were required of me. I had to put up a wall to protect my heart. As if this wasn't hard enough, we went yesterday to tour his classroom and school. I had in my mind what I imagined this would be like and I prepared myself for it to be difficult. But no amount of preparation could have equipped me for what I was about to experience. No number of days, weeks or years ever make this journey easier. Coping skills get stronger, but they do not get easier. So as I walked into his classroom, I noticed first that they had lots of sensory toys and activities. On the far wall, was a small fish tank with little fish (one of Carter's favorites) and there were 3 aids and a teacher in the room. Most of the children were eating lunch and a few were sleeping on soft mats. All such wonderful things. But in the midst of all these things I was so happy to see, were also very real and very startling things. Half of the children had severe physical and mental challenges. In this classroom were children who had similiar disabilities as my child, but seeing them with a bystanders perspective gave me a much clearer view on my son's needs. This is not what I wanted for my son; this was not part of the plan I had always imagined for him. I am surprised my heart is not physically broken and irreparable at this point but somehow, some way, it keeps beating and recovering. I managed to keep it together even though my thoughts were in shambles at my feet. I'm not sure how I made it through the rest of the tour as my heart screamed in pain. This is the school I wanted for my son for almost a year; I knew full well what it would mean. But seeing it for the first time, threw my system into shock. I am left with many questions that I didn't think I would have. I wonder if Carter will always be in a special needs school. I wonder if he will always need equipment to help him stand or walk. I wonder if he will ever call out for me using "momma" or if he will ever tell me what he thinks about his life. Will he always be in diapers and need around the clock care. Who will take care of him when I can't someday. Many of these things, I know I shouldn't even think about at this early in the game...but I can't block them out and pretend it won't be something we face someday. This is real, this is what it is. I spent a lot of the afternoon in tears, even though it was my birthday. I couldn't talk about the tour without bursting into tears. Trying to describe that dark place in my fears to others, kept resulting in inadequate descriptions and words. There is no clear way to explain what I felt like or how I feel now. I have 9 days to digest this pain and rebuild it into ways I can handle. I have no choice but to give this new challenge a shot. I have to put aside my own pain and fears. I know that January 23rd will entail lots of motrin and tears. How I will get through this, I'm not quite sure. But just like the decisions and experiences over the last 3 years, I find ways to do it. I'm a mom of a special needs child...it's just what we have to do. There was no choices made in the way my child came into this world and there are no real choices in making things change. I only have once choice and that is to grow a thicker skin and run through the fire yet again. The blisters and damage will heal; I will heal.

Harder than I thought...

This morning was Carter's evaluation for school. We were in a small room with 3 therapists, a nurse, and psychiatrist. I didn't expect to be as uneasy and sad watching this happen, especially since I already expected it to be like this. But to see a new team of faces gathered around my child with questioning eyes and attempts to get appropriate responses to simple commands and getting struggles in return, was heartbreaking. I watched in anguish as he bit his hands so hard that he left marks and he poked his eyes every chance he got. I clutched my coffee in my hands trying to find some small morsel of comfort in it's warmth and familiarity. Trying to answer the numerous questions that I have been asked so many times before was different this time. I tried to answer the questions as best I could in hopes that I didn't sound unprepared or inadequate. I'm sure I was overly worried, but as a mom to a special needs child, that feeling of inadequacy is common...as common as putting on accessories for a special occasion and hoping it will match and not clash in the most obnoxious way. I hoped that all of my observations and motherly instincts over the last 3 years were enough for my child to start school with some sort of base to stand on. I don't have the reassurance that my child can recite the alphabet or count to some substantial number that will impress his teachers. I do not have the satisfaction that I taught him the correct colors and manners. I have to hope that my suggestions will carry across clearly to the people who will care for him. I have to hope that Carter will warm up to his new surroundings enough to attend to small tasks or therapies. I don't get to tour schools and choose for myself which one I want him to go to. My list of to-do's to prepare him for his first day consist of calling specialists to ask if they will draw up a G-tube care plan and seizure protocol. I have to get medication permission from the pediatrician so the school can administer his afternoon medicine. I have to get a medical explanation that states in detail why Carter doesn't have up-to-date vaccines.
So as I sat there and watched my son being assessed, I grasped onto every ounce of my strength I could and tried to push back my tears. It was when all of the therapists and nurse left and the school representative asked me if I was okay and whether it was overwhelming to have so many people asking questions and assessing Carter, that I broke into tears and said with all honesty, "yes, it was very hard and scary...It's very hard to send my baby to school". She gave me the most understanding look and told me that I was a great mother. It was that moment with the best words I could have heard that peace found it's way to my heart. Now it's off to contact doctors and start gathering all the information they need.

Full force ahead...

It's been 6 weeks of fun and food! We welcomed our new baby girl into the world, celebrated Thanksgiving, Christmas and New years and now real life kicks back into full force! Back to weekly therapies for Carter, appointments and the big transition appointments to start pre-k. It's crazy to me how fast the last 6 months has gone...I remember thinking last summer how much time we had to prepare for Lily and school to begin. It felt like an eternity away. Now here we are...tomorrow is the evaluation appointment with the school district therapists, nurse and psychiatrist. One week from today, we will find out which school the county has chosen for our son. For almost a year, my husband and I have hoped with all of our being that he will get placed in to West Gate. It's a school strictly for special needs children and there are 2 nurses on staff at all times, there is a million dollar snooze land (sensory rooms) and we've been told by so many people that it's such an amazing school. Only 17 more days to prepare. Tears aren't too far off each time I think about putting him on the school bus and watching it pull away with my baby inside. I wonder what he will be thinking about as he looks around and only sees strangers and big seats that are unfamiliar. I wonder if he will be afraid or curious?! Of course, I will be trailing close behind the bus his first day or two to see his route and to experience all of his firsts in school. Carter may not have met any of his milestones so far, but starting school and becoming a big brother are HUGE milestones in our home!

After Carter's first day of school, his 3rd birthday celebrations will begin! We will be having his first birthday party surrounded by his therapists and friends! We will have decorations, cake and food! I am so excited to celebrate with all of these people that we love so much and for Carter to see and feel all the love he has around him!

I have a great feeling about 2012 for Carter! I have a feeling we will see big changes in a good way!

New Year for new beginnings...

Tomorrow is the last day of 2011! Reflecting on the year brings both happiness and heartache to my mind. It's been a year of findings and a year of blessings. The happenings of the year that stand out to me most are...celebrating our son's second birthday, finding out we were expecting our second baby after trying for 8 months, getting our son's official diagnosis in Atlanta in May, Carter's feeding tube surgery in June, finding out we were expecting a girl in July, going home for my big baby shower in September, welcoming our baby girl on November 22nd and having my mom here to share in this amazing experience, my husband's aunt coming down from Iowa and my husband's sister, her family and KayLeigh coming down for Christmas. It's been such a full year!

I am so excited for 2012! I turn 26 in 2 weeks and Carter turns 3 in 3 weeks. He will also start school on his birthday! I have a good feeling that this will be a big year of progress for Carter and we look forward to seeing our baby girl grow and develop! There is so much to look forward to and I can't wait!

Bring it on 2012!!!

Florida Christmas

It's 3 days until Christmas and I am finally getting into the spirit! This is the first Christmas that we haven't traveled home to Michigan to spend it with my family and KayLeigh. It's the first year with no snow, winter coats, mittens and hats. It's the first year that we will spend Christmas around our own tree with all of our kids in one place! It's our first Christmas with our new baby girl! It's also the first Christmas that my husband's sister, her family and KayLeigh are coming down to spend it with us! I think it's taking me a while to get into the spirit because it just doesn't feel like the holidays with the weather still getting into the 70's and no snow. I've also been so busy with a newborn and toddler, that I barely have time to recognize the season.
So this last 3 days leading up to the big day, I am playing Christmas music, taking pictures of our tree and finishing up all the shopping and wrapping! Once our family arrives, we are going to take the kids to see the zoo lights and get family pictures taken. It's going to be a week of fun festivities!
I am so excited to see the kids' faces when they wake up on Christmas to filled stockings and lots of presents under the tree! I can't wait to see them playing with their new goodies and to make them a big breakfast!
Tis the season!!! MERRY CHRISTMAS!

A new beginning.

This journey we have been on has been everything from heart breaking to inspirational. There have been days when I questioned God and his plan for us. There have been nights I laid awake wondering "why my baby". The tears we've shed could have filled rivers and the smiles we've had could bring the sun out of any cloudy day. But despite all the ups and downs this journey has brought, I am excited to say that this past week has done miracles for my heart and healed wounds I thought may never mend. Welcoming our new baby girl has lifted boulders from my shoulders in a way I can't quite describe. I look at her in all her perfection and grace and thank the heavens for the gifts we have. Through our daughter, I can start letting go of the fear and sadness that I thought I would always carry. There is still a lot of unknown factors to our little girl's future and whether she has inherited the same disease, but seeing the miracle she is and reminiscing about our son as a newborn has brought me peace. I find it hard to put into words, but can only sum it up by saying that I believe a new beginning of life and seeing our newest miracle, is just what my husband and I needed to look past a lot of the hardships we've had.
I feel like the luckiest mom in the world for my two precious babies! <3

Nothing more amazing!

On Monday morning (11/21/11), I had my last OB checkup where the doctor set me up to be induced at 1:00 a.m. on 11/22/11. All the waiting and planning finally coming to a fast peak! All the things that needed done to prepare for our baby girl's arrival, were finished over the last couple weeks. And to top off all of the perfect planning, my mom made it down from Michigan the night before. So with all the details complete, we decided to go to some stores to walk. A few hours after my appointment, I started to feel contractions that progressively got more painful throughout the day. I did everything from a hot shower to bouncing on the yoga ball in hopes that it would get me more favorable for the fast approaching induction. By midnight, I told my husband and mom that it was time to go and I couldn't wait any longer. The contractions were coming every few minutes and were getting pretty painful. Upon arrival at L&D, the nurses knew by my face that I was indeed in active labor. The nurses were going to start pitocin, but I refused it because I was afraid I couldn't handle worse pain than it already was going naturally. Over the next 7 hours, I did my best to get through all the pain without pain meds or pitocin and dilated to an 8 all on my own. The doctor broke my water and gave me some more time to progress on my own. THEN...I was stuck at an 8 for 3 hours. The nurses finally told me that I must start Pitocin to complete the last 2 centimeters to which I refused to do unless they gave me an epidural. I was at the point of desperation for some relief so I could try to rest. The anesthesia team came very quickly and did the epidural. As soon as they finished, I yelled "I NEED TO PUSH". I couldn't think of anything else, I just knew it was time to push. The doctor came running...10 minutes later, LilyAna LeAnn came into the world! Tears rushed to my eyes as they laid her on my chest and I seen her face for the first time...my heart swelled with more love than I thought I would ever know as I heard her first cries. And I felt so proud as I watched my husband cut her umbilical cord to free her from my body for the first time. It's hard to find powerful enough words to describe how it feels to bring a baby into the world; I am in awe and just so in love.

Just as I thought I couldn't feel any more love and excitement, I quickly realized I could. When my parents brought our son up to the hospital to see Lily for the first time, I thought my heart would burst. Once we got Carter positioned in my lap, we laid Lily in front of him and he looked right at her with a face of wonder. To what extent he understands, I do not know. But to hold both of my babies in my arms all at once, was so perfect!

I could not have asked for things to happen any more perfectly!