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!

Just to see him smile!

There's been a side to my son that has shined the last few days that always comes and goes. It's the times that it returns that rejuvenates my soul and makes me strong enough to take on the world! This morning, he looked me right in the eyes and just stared at me. I told him that he would be a big brother very soon and his eyes sparkled as the smile spread across his face. Whether he understood the meaning behind my words or he just liked the tone in my voice; either way, it made my day. Those moments when he stops what he is doing and just stares at my face with wonder, are the best moments as a mommy to me. I can feel the love and warmth in his stares. I hope that he can feel it radiating from mine as well. In my heart, I just know that he knows!

When my world is perfect...

For the most part, I don't allow myself to dwell on the "what if's" anymore. But I can't deny the fact that I still wonder sometimes. I do my best to focus on each moment as it comes, instead of crying over the past and possibilities for the future. The only times I really loose my breath and feel overwhelmed is when we see a new specialist or someone wants to know about Carter's journey. It's those times, that I list off all the reasons we had suspicions something was wrong, all the surgeries and medications and all the tests. It's then that I realize "wow, we have been through so much". It's those moments that I allow the drained feelings to come pouring out. It's then that perspectives adjust and the sadness for what are not, surface to my skin and I feel old.

But despite those moments, there are things that happen in my daily life that remind me of why my world is perfect. It's when my son cries in the morning as he wakes up and daddy or mommy come into his room to get him and his face lights up, that I remember I am strong enough to do this. It's when I pick him up and he wraps his arms around my neck and lays his head on my shoulder, that he is telling me he loves me. It's the laughter that fills the whole room when daddy starts to sing. Its the excited toothy grin across his face when we get in the van for a ride and he rocks to the beat of the music playing. My all-time favorite special moments that we share are when he reaches for my face and touches me...just a simple touch that fills my heart with all the healing and happiness that it needs to get through this. My son is undeniably different from a typical developing 2 1/2 year old, but this little boy knows love. He is the most special little boy and I couldn't have asked for any child more perfect! <3

Challenged holds so many meanings...

Today we had a school meeting for my son...the third one, but not the last. It was simple and was only to address his meds, demographics and updates for future enrollment. It's funny...if someone would have told me 3 years ago that my child would be meeting with a special needs representative for the school district to discuss transitioning, medical needs, delays, future prognosis, and directions to the office where my son will be evaluated by a therapy team and psychologist to place him in the best pre-k class available, I would not have believed it. If I was asked whether I would want my son to go to a public school or special needs school, the answer would have been easy 3 years ago. Becoming familiar to the terms related to my son's reality has become normal to me, yet breaks my heart into a million pieces. Being told my son will be in a classroom for mobile challenged children registers clearly in my mind, but hurts so bad. He will go to physical, speech and occupational therapy at school. He will not be learning colors, letters and integration skills. He will be learning to use his hands for things that most children learn to do in their first year of life. He will be learning to understand his name and to sign for what he needs. Instead of going to school a few hours, a couple days a week, he will be going 5 days a week, 6 hours a day. Instead of climbing onto the school bus and waving bye-bye to mommy, he will be in a wheelchair and strapped onto the bus by an aid. These may only seem like challenges for my son, but these are challenges beyond words to my husband and I. Sending my first child off to school for the first time, will entail a list of things that most mothers can't even begin to understand.

There are many things that are out of my control, but there are a few that are not. I will dress my son in a brand new outfit on his first day of school and drive him to his new school myself. My camera will be charged and ready. I will be the first to push him through the doors that will become his home away from home. I will greet his teacher as I stand behind him just like I do in every new stage of his life. I will watch his expressions as he discovers his classroom and classmates. And before I turn around and walk out of his care for the first time in his life, I will kiss him with every ounce of my love and show him that mommy is so proud of him!

Big Brother...

As a momma to a special needs child with severe cognitive delays, having another baby is a different type of adventure. Or at least I imagine it is. I see the pictures of big brothers and sisters holding their new baby sibling with wonder on their faces as they discover their new companion and think how great it must be for the parents to see this, hoping they realize how fortunate they are. Throughout my pregnancy, I have repeated over and over to Carter that he is going to be a big brother and that baby sister is in mommy's belly. I place his hands on my tummy to feel the kicks and movements hoping to see some glimpse of wonder or understanding on his face...but always find a blank stare instead. But I continue to try, even if the response is always the same. I find peace and enjoyment in putting "BIG BROTHER" shirts on Carter and love to show him his baby sister's little toys and pink nursery. I look forward to sitting them side by side for pictures and play time. I have all kinds of plans for next Halloween and dressing them as a cute theme. I could daydream all day long about how they just might communicate in some special way that we don't understand. I hope that our new baby girl will love him unconditionally and never see him as anything but her big brother just like every other child.

I have spent months thinking about how I will juggle my son who cannot yet walk and a newborn baby and have been very blessed to have wonderful family and friends who have bought us double strollers. I plan to use baby carriers for the baby and to give myself plenty of time to load the kids into the van when we have errands to run. I will do my best to get into a routine as quickly as possible once she is born as to help me navigate each day with a little more ease. I am a planner...a list maker. So I am embracing this time during pregnancy to work things out in my mind before the chaos and changes begin. I understand that things may not always go as planned, but I believe having structure and plans will help me brainstorm more quickly when life decides to take a wrong turn or new direction.

One of the most common questions we get when people know about our son's disease is whether the new baby will have the same condition. It's a question that is not easily answered and it's one that I don't like to get. We seen a Maternal Fetal Specialist throughout the pregnancy to monitor her heart and growth closely and from what we can see, she is perfect. But so was Carter in all of his ultrasounds. Mitochondrial Disease is not something that can be picked up on an ultrasound or blood test. This disease is so complex and newly discovered, that there isn't much doctors can do to detect it, except watching for symptoms after birth. Regardless of whether she inherited the same genetic defect, we will love her and do things exactly the same as if she is healthy. Making the choice to try for another baby was a risk we took, but I believe that every parent is taking the same risk when they decide to have a child. There is never a guarantee to any couple that their baby will be healthy. There are no guarantees to anything in life. We are nothing but elated and excited to meet our baby girl and to introduce our son to his new sister.

Only 22 days until my due date (Thanksgiving Day)!!!

The Inevitable

As my son's 3rd birthday rapidly approaches, I feel myself getting that uneasy anticipation that I experience with each of his birthdays.  I want nothing more than to plan a big party with decorations, cake, his favorite foods and lots of presents, just like every parent imagines for their child's birthday celebration.  But behind each hope and plan I'd love to make, there is a lump in my throat and an ache in my heart.  We can do all of those traditional things, but to my desperation and sadness, I know that my son will not understand.  He will not admire the decorations or enjoy playing with the balloons like most children his age nor will he make a mess of his face and clothes with cake and frosting.  He does not have a favorite food and he will not open presents with an excited grin on his face.  All of these things will be purely for me and my husbands desires that he just might get it at last.  Just like all of the other holidays and special occasions; we decorate the house and buy our son outfits to match the occasion so we can take lots of pictures and savor the memories.  But in each of the photos, our son is distant and detached from what is going on around him; the decorations unnoticed and the outfits only another part of his daily routine.  The smiles we plaster on our faces as we hold our son close, are only optimism in the works.  We hold dear that our child understands more than we realize, but have yet to see the reality.  We have done everything we can to find answers, a diagnosis and treatment possibilities only to end in a place that leaves us just as confused and scared as we were without those conclusions.  Our son suffers from a rare metabolic disorder called Complex I Mitochondrial Disease.  The doctors cannot tell us what the long term looks like nor can they assure us that he will progress and live a somewhat typical life.  So, in our hopeful journey of what if's, we hope that by deciding on colors or themes for our son's 3rd birthday, that he will understand in his world, that we love him and will not give up.  We will live each day with the belief that he knows what we are saying to him, that he understands those 3 simple words we repeat to him hundreds of times a day; that he knows we are mom and dad.  My hopes for his third year consist of the same things from the last two.  I hope that he will learn to walk, talk, eat, and understand simple commands.  I hope that he will begin to acknowledge my husband and I as "mommy and daddy".  I hope that he will be able to acknowledge that he understands his fourth birthday.  I will never lose my will to hope.  I will keep fighting his fight and loving all that he is.  We love you, Carter!

Welcome...

Welcome to my blog!  A place for me to share my experiences as a mother to a child with special needs.  It's taken me a long time to get to a place in my life where I am comfortable sharing my son's story and my own personal struggles along the way.  I hope that by writing here will be both therapeutic for me and helpful for those who want to know more about what this means to me.

My son is coming up on his 3rd Birthday on January 20th.  His name is Carter.  He lives with a metabolic disorder called Complex I Mitochondrial Disease among a few other conditions that cause him to struggle with even the smallest of "normal things".  This disease effects the powerhouse of cells that are needed for energy production and livelihood of vital organs.  My son's brain, muscles and gastrointestinal track were affected the most by the disease.  He is unable to walk, crawl, talk, eat or understand simple commands.  He must take several medications and supplements every day to help him regulate abnormal levels and seizure activity.  He had a feeding tube put in on June 8th of this year.  We got his official diagnosis in May. 

Our life for the last 3 years has consisted of numerous surgeries, countless tests, many long distance trips to specialists, let downs, struggles, triumphs and learning experiences.  This was not a life that I ever imagined for myself nor my child, but it's a life that I am learning to embrace and accept.  So follow me as I continue to walk this path that is unfamiliar and untouchable to most, yet weathered by many before me and many after...