Friday, May 23, 2014

My beautiful blue eyed boy

You would think after almost 4 years of questions and answers that it would get easier to handle.  In some ways, it is.  I don't find myself getting befuddled and frazzled when difficult questions arise, but the after math always leaves me reeling.  Never in a million years would I have ever thought I would be the mom who would be asked questions about life span or the unknown in regards to my young child.  Never did I think I would become a live in nurse who uses medical knowledge outside of the work place.  Communication with Carter's teacher is more about Carter's medical struggles each day rather than development.  I am in contact with Carter's medical team more often than most of my family.  Most of the time, when I tell people that Carter has Mitochondrial Disease, it leaves people confused.  But when I say he is my 5 year old son who cannot walk, talk or eat most food and that most of his nutrition goes through a feeding tube; the realization sinks in.  My son is sick.  Not with a cold or ear infection; but forever sick.  There is no antibiotic or easy fix.  There is NO fix.  As I say these things out loud to help people understand what Mitochondrial Disease means, I find the old wounds in my heart begin to open.  I feel the age in my 28 years multiplying.  Yesterday, at my sister-in-law's yard sale, a lady stopped to read the flyer on the table about the upcoming 5K that we are planning and I explained that Carter is my child.  We got in to "the conversation" which left this lady, a total stranger, in tears.  I felt my heart hurting, but I have learned to keep my tears pushed back.  An acquired skill.  When I turned around as the lady walked away, my sister-in-law surprised me as she was also in tears.  She asked me "how do you not cry every time you tell people about Carter?"  I've never been one to cry in front of others, at least I try my hardest not to.  My answers have become so routine that I can say them without even thinking; a survival skill.  It's the moments when I am alone with Carter and I have taken my armor off for the day, that the pain falls from my body.  Since my daughter was at her papas for the night, it was a rare evening of undivided snuggles with my little man.  After I gave him his night meds, I climbed in to his padded play area to lay with him.  As his meds started to work and his body was released of it's struggles, I felt the toll take over.  As I watched his muscles relax and frustrations dissipate as my son succumbed to sleep, his cerebral palsy at rest; I wept.  I cried big, ugly tears as I mourned for my child.  The only time we see Carter relaxed and peaceful, is when he is asleep.  My husband and I don't talk about the what if's or why's very often; it's just too hard.  But last night as I cried in to Carter's shirt, I told my husband, "I just don't understand what went wrong with Carter's brain to make so many things so hard for him. I just don't get it".  As I watch my perfect, beautiful son sleep, you wouldn't even know he has cerebral palsy, cognitive impairment or self aggression.  He is so beautiful.  When he is awake and I get those rare moments of eye contact, I see wise blue eyes looking back at me.  Behind the confusion and frustration, there is a little boy who understands.  And as his mommy, I try so hard to be strong for him.  I do my best to make the right decisions for him, but worry that it's not good enough.  I hope that Carter understands what I am saying when I tell him how much I love him.  They say that when you go to heaven, that all of your struggles, pains and medical problems are healed.  They say that we all walk and talk in heaven.  As I have my heart to hearts with God, I plead with him to please make my baby better, if not today then some day when he embraces him in heaven.  I don't understand why Carter is sick and I probably never will, but what I do know is that my little boy changes lives.  He has changed mine in so many ways.  There is a crazy inner battle within myself when I think about how perfect Carter is to me and how I wouldn't change him for anything yet wish he could have an easier life.  Regardless of whether your child is healthy or sick, never seize to hold your children close every day.  Shrug off the endless messes and tantrums.  Admire them as they sleep.  Relish in their giggles and smiles so that your heart can handle their tears and frustrations.  Lessons that my little warrior has taught us.  Be strong, be faithful and be happy.

Wednesday, May 14, 2014

My Life Changed

I feel a compelling need to give credit where credit is due.  I wrote a couple days ago about our amazing experience at KayLeigh's classroom and didn't elaborate enough on what  made that day so amazing.  The majority of my post was to emphasize my fear as a mother of a special needs child when it comes to him being accepted and treated like any other child.  I live with that fear everywhere we go, including the grocery stores, amusement parks, doctors appointments, and even family functions.  When we are around people who don't understand why Carter is different, they tend to stare and sometimes give us funny looks.  I am sure I get the same feeling in the pit of my stomach as parents of typical developing children when they get looks for their child acting up in the store.  No parent wants their child to be judged or for their child to act up.  Even the best parents will have children who act out or make mistakes.  And for that exact reason, I feel awful that any parent might feel like I pinpointed their child as a bully.  I NEVER in a million years meant for my post to sound that way.  ALL kids at one time or another, have said something to another child that hurt their feelings and on the same hand, have probably been teased themselves too.  It happens at every single school, classroom and playground in the world.  Even children from the best homes, will have bad days and do things out of character or that they don't mean.  When I mentioned the boys who had teased my daughter and son at one point or another, but explained how they were the boys who amazed me the most, I meant it with all the best intentions.  Those boys are the ones who made that day so wonderful.  It's like getting a compliment from someone you least expected and how it means so much more to you than when your mother tells you how great your new do looks.  It's the unexpected moments in life that touch us the most.  It's not that I ever doubted those boys would accept my son with open arms, but they went above and beyond what I ever imagined!  They taught me so much that day!  As I lived in fear of bringing my child who vocalizes loudly, pokes his eyes, bangs his head and has mood changes at the drop of a dime, I wasn't sure how ANY of the kids would respond to him.  It was a new experience for me, which is always scary.  And those kids showed me what compassion and acceptance truly look like.   I was the one who walked in that classroom that day with negative feelings and doubts while the kids were excited and enthusiastic to meet Carter.  I was the only person in that room who was worried and at my weakest moment, those kids lifted me up and gave me a newfound hope and happiness that I hadn't found yet in our journey.  They renewed my strength when I needed it the most.  Those kids may not have even realized that day what they did for me, but it's a day I will never forget!  Every single one of them, especially those boys, changed my life.  It wasn't just a great day for me, but for KayLeigh and Carter as well.  I want to thank the parents of all of those kids, for raising such loving, smart and kind children.  Those kids made a difference in my life and I know that they will make a big difference in the world throughout their lives.    
Below is a picture of the toy that a child gave Carter at the end of our visit and for so many reasons, this is cherished by our family!  It is truly amazing to me that he even thought to give Carter a gift, especially one that he worked so hard for.  It was more than just a gift, it was a symbol of friendship between that child and my son!  I was literally brought to tears when he asked me if he could give it to Carter.  This toy will be kept among the many treasured items we have kept along the way.

Monday, May 12, 2014

Modifying our World

They say that raising kids changes your life.  Not just the sleepless nights, diaper changes or extra long road trips.  But because the things that used to be important, aren't so important anymore.  You find excitement in the things that light up your child's face; such as the song at the beginning of the Mickey Mouse cartoon or apple slices at McDonalds.  I find myself snapping pictures of all the little things that to me are simply amazing…because MY 2 year old is doing it.  To many other people, it might just be "oh look at the typical things she's doing, whoopty do", but it's MY 2 year old doing it.  I'm sure all parents can relate!  My iPhone is literally so bogged down with pictures and videos that I have to meticulously scroll through old pictures to decide which to delete just to make space to take a new one and then half the time, I end up missing the cute picture opportunity any way.  And while all of this is so amazing to me, I also experience the opposite end of motherhood that many others do not.  I have a 5 year old who is still learning to do things that my 2 year old learned to do months and months ago.  But nonetheless, I am over the moon excited about every little thing he does!  Some of the things that come "naturally" as a mother in raising children, doesn't come naturally when the natural sequence of life, is disturbed.  And just when we think we have it figured out, life changes again.  Two steps forward, three steps back.  But despite the challenges, we keep on trucking…and all the hard work, will some day pay off again.  This afternoon, as I have a few hours of quiet time while Lily is riding the big school bus with a friend who is a bus driver, I decide to use my time catching up on details for the upcoming 5K and posting new blogs.  Grown up time, right?!  Well, I'm TRYING to do grown up things, but amidst my dining room table of Mother's Day flowers, my untouched purse and cup of coffee, there is this odor.  An odor that keeps distracting me from my grown up tasks.  I have lit a candle and sat Carter's vanilla scented scentsy lion next to me so that I can try to concentrate.  But the odor keeps penetrating my sweet smells with it's annoying presence.  I have pulled every toy out of the nearby toy box in search of an old sippy cup or old piece of food but to no avail.  As I pull out the toys, I subconsciously think of when one of the kids got this toy or that book…even as I am annoyed by the disturbance at hand.  Lily has lots of stuffed animals, babies, computer learning programs while on the other hand, Carter has squish balls, texture/sensory toys, and a peg board for occupational therapy.  We have even resorted to looking for toys for Carter in the pet section, because they make squeaky/scratchy sounds and are easy to grasp.  A learning curve along the journey.  We also shop in the infant-2 years old section rather than the toddler boy aisle.  And as I sit here smelling the vanilla from Carter's scentsy toy that was donated by a kind stranger online, I smile.  Although I miss some of the quiet, predictable lifestyle I used to have; I wouldn't change this crazy, spontaneous adventure I have now, for anything!  When I wake up each morning, I never know what the day will hold.  I have went from a person who likes to schedule every minute detail to a person who can change those details within 45 seconds if need be without feeling my left eye twitch.  I used to be the most organized and tidy housekeeper I knew; now I am lucky to have a clear path through the living room amongst the toys and blankets around the play area that takes up the largest portion of our living room.  But this play area is Carter's link to normalcy and exploration despite his self aggression.  

I have returned from picking Lily up from the bus garage and had yet another exciting drive home.  I handed her my chap stick which is one of her favorite things to do; carefully putting it on over and over.  But this time, she decided to smother every inch of her exposed skin (which is a lot since she's wearing shorts today).  Oh the things that we mothers will do for a quiet drive home…and the messes we will clean just to have that.  And of course, I had to snap pictures of that too!  

I'm sure every family learns to modify their world as kids change their lives, but these are just a few that I thought of today!  Sometimes it just takes a little digging through a smelly toy box and wiping chap stick off your tired child, to remember how much your life has been modified, yet perfected!

A day that goes down in history...

For the past few months, Carter's big sister, KayLeigh, has been asking if I will bring him to her classroom to meet her teacher and classmates.  The teacher this year is so thoughtful, kind and amazing!  Last fall she invited KayLeigh to eat lunch with her so that she could ask questions about her little brother.  This meant the world to us!  So over the months, the idea of taking Carter to a "typical" school was both exciting and terrifying for me.  Through the process of putting Carter in school two years ago, I remained adamant that he would never go to a regular school around typical developing kids, ever.  Typical school is hard enough as it is for kids who have no developmental delays, medical problems or behavioral differences.  There was an incident when KayLeigh was in the first grade where a couple boys in her class made fun of Carter when she showed pictures and talked about him as her show-and-tell.  From that day forward, I involuntarily made a vow to never voluntarily put Carter in a situation with potential for teasing.  It's one thing that I don't think I could handle well.  In my mind, I have played over and over all the possibilities and scenarios that could happen if I ever witnessed or heard of someone teasing my precious boy.  I would totally be that crazy lady who yells and cries…at least in my mind, I imagine myself to be that woman.  So as the mention of bringing Carter to meet KayLeigh's classroom have resurfaced several times over the past few months, I was faced with the reality that I would have to make a decision.  Was I ready to push Carter into a classroom full of 4th graders and showcase his differences to a group of kids who may not understand?!  As I looked in to KayLeigh's face as she asked me again, "mom, please bring Carter to meet my teacher…she REALLY wants to meet him", I responded without giving it too much thought because I knew I would change my mind if I did and said, "Okay, I will bring him this week."  What did I say?!  What was I thinking?!  But once a promise is made, I can't break it; I've never been able to break a promise, especially to my children.  I did as I said I would and called KayLeigh's teacher that following Monday to ask which day would work out for me to bring Carter up.  We agreed on Thursday afternoon.  It was done.  The decision irrevocable.  I had 4 days to prepare and brace myself.  When the day finally came, I had a lot to do to make it possible.  I dropped Lily off to my grandma's house around 12:30 and headed to Carter's school to get him by 1:00.  When I picked Carter up, his teacher told me that he had had a seizure in the pool that morning; they were sure of it.  So as I was embarking on treacherous waters, this was just one more thing to add to my worries for this day.  But he was in good spirits and seemed fine, so we continued our plans as usual.  KayLeigh's school is an hour away, so I used that time to listen to our favorite songs, sip on coffee and mentally prepare myself for any scenario.  Once we arrived at KayLeigh's school, I gave myself one last pep talk before getting Carter's wheelchair unloaded, getting him situated and heading in.  I walked slowing to KayLeigh's classroom, still not sure what to expect.  Once I appeared in front of her door, KayLeigh waved frantically as she spotted us!  She ran into the hallway to push Carter in herself.  I could have cried happy tears right there on the spot!  Her teacher told me that she had asked over and over all day when we would get there.  KayLeigh proudly parked her little brother in front of the classroom as she kissed him and hugged him over and over.  Her teacher told her to introduce him to everyone, so she proceeded to tell them his name and that he has Mitochondrial Disease which causes his muscles not to work like ours.  Several hands shot up in the air.  The teacher called each name one at at time so the kids could ask questions.  The first child asked, "How old is Carter?"  The next asked, "How old was he when he started to have the disease" and the next question is what stopped me in my tracks, "how long do you think he will live?"  It took me a minute but what felt like a lifetime to compose myself and swallow down the shakiness in my voice.  I explained to the classroom that statistics aren't good for kids with this disease and that we will be lucky to have him as many years as he's meant to live, but that many don't live to see their early teens.  The entire class broke the silence into "awes".   Then came each of their turns to come up and say hello to Carter.  I could tell the kids were unsure what to say or do, which at first made me a little sad.  I squatted beside Carter so I could help him wave back at each of the kids.  After they had each greeted him, KayLeigh asked if I could get Carter out of his chair so he could play on the floor.  Her wish was my command that day.  We put him on the floor and slowly, ever so slowly, a miracle happened before my eyes.  The kids slowly, slowly, slowly made their way to the front of the classroom as they circled him.  I decided to get up and stand by the teacher to take pictures and the kids could watch how he plays.  Before my very eyes, they scooted closer and closer until the entire class was giving him "high fives", rubbing his back and head, talking to him...until another miracle happened…Carter started belly laughing.  The voices rose and laughter bubbled over.  I could feel my worries dissipate and my heart swell so big.  It was the most unbelievable sight I have ever seen.  It was what I always wanted so badly for Carter!  To have kids play with him and accept him for who he is.  And that day, he made a whole classroom full of friends.  As we prepared to leave, the kids asked if I could bring him again and gushed over how adorable and strong Carter is.  A little boy who has picked on KayLeigh this school year, came over and asked me if he could give Carter his toy he had earned for staying on green that week.  I was in pure shock!  The two boys who made fun of Carter in the 1st grade, were the ones who played with him the most.  All that pent up worry and anger that I had had, was all of a sudden gone.  Those kids may have learned a valuable and lifelong lesson by meeting our special boy that day, but I think I learned the most from those kids.  Kids are so smart, so eager to learn and so accepting; even of those who are different.  It's all about understanding what difference means.  I learned that I have to let my little warrior be allowed to be "normal" and teach others how amazing he is.  I can't be afraid of the unknown or what MIGHT happen and simply just LET IT HAPPEN.  There are so many things about Carter's life that I cannot control, nor can I predict…just like this day.  I have to learn to let go of my worries for things I can't change and live in the moments that we have.  

And lastly, I must say that I am so proud of KayLeigh for being so proud of her little brother, no matter what anyone else might think.  Carter doesn't have special needs in the eyes of a 9 year old; he simply has special powers that deserve to be shared.  

Wednesday, May 7, 2014

The Seasons Change

As I ran a couple errands this afternoon, I admired the blooming flowers and trees along my route.  The beauty after the storm.  Last nights thunderstorm and pouring rain assisted in more flowers blooming and trees smothered in new buds.  The dreadful winter becoming only a shadow of a reminder.  For Carter, it was devastating and the aftermath is still in repair.  He lost all of his strength to pull up or take steps.  He battled cold after cold.  But as the weather starts looking up, so does Carter's development and health.  Just yesterday, he pulled to stand twice on the couch.  He isn't throwing up or refluxing nearly as much and he has slept through the night, the past 2 days.  He hasn't missed any days of school in the past month, except for a couple routine doctors appointments.  Proof that the worst seems to be over; both in weather and in health.  No one is really sure why this happens to a lot of kids with medical problems, but I'm thinking it could be weight gain, med adjustments, colds, hospital admissions and the winter blues.  

But as the seasons always do, change is coming.  It might be hard to imagine during the hard months when it's gloomy and cold, but the sun is always there.  Just because we can't see it, doesn't mean it's not there.  It's the same with Carter's abilities and strength.  It might be hidden sometimes, but it always there.  The proof is in his smiles and resilience.

It's always amazing to me every spring that beneath the frozen ground and -0 temperatures, the seeds and bulbs of perennials seize to die.  Even after the limbs of trees are covered in ice over and over, they continue to sprout new leaves every year.  Even the toughest of times cannot break the hope and fight inside of our son.  It's always there, even when we worry.  I am so thankful to all the doctors, therapists and teachers who never give up on Carter.  They continue to research and trial new things, even when the odds are against us.  A couple months ago, Carter was evaluated at the big eye center in Ann Arbor to determine how well he could see.  They concluded that he can see okay minus some astigmatism and  near sightedness, but the doctor continued to say that he didn't believe glasses were necessary because of Carter's cognitive impairment.  He said it wouldn't make much difference in his every day life.  That man must not have hope.  He must only understand what he reads in his textbooks; tunnel vision of the world around him.  Our local eye doctor couldn't disagree more with that narrow minded doctor.  We went ahead and ordered his new glasses any way.  Who is to say that glasses won't make all the difference in Carter's exploration of the world around him?!  Who is to stay that he won't try harder to touch button prompts to talk to us if only he can see clearer?!  You will always find hard times and negativity in this world, but it's how you decide to move forward that makes all the difference.  What would this world be like if there was no hope?  It's a thought that I refuse to give my time to.  Good bye winter, hello spring!