A Mother's Toll

This past week has been really tough.  In a way that was debilitating to me as a mom.  The struggles are a constant tug-a-war.  Carter has good stretches that can last anywhere from two to six months but then have stretches of pain and struggles that can last just as long.  We sit on the edges of our seats; our very cores and nerve endings in a constant over drive of fear and anticipation for each of these stretches that will inevitably appear and again disappear.  Whether it's weather or growth related, we don't quite know.  No one knows.  This time, the rough patch started with reflux and vomiting and progressed in to "seizures or dystonia", a halt in eating by mouth and lastly, screams of pain.  By week two, when the shaking, breath holding and no eating hit...we decided to call 911 for the first time in Carter's life.  We weren't entirely sure if we were indeed seeing seizures or not.  But we wanted to make sure he was stable and getting enough oxygen before we decided whether to take him to the children's hospital or not.  We gave him a dose of rescue meds and the paramedics arrived quickly, but by luck, Carter's episodes slowed down and he got sleepy so we refused transport.  But about 20 minutes after they left, the episodes increased again and we decided to head to the hospital.  He was admitted for testing and observation.  And for me, as a mom, the toll was being taken.  I have felt nauseated and ill since it started.  I would feel hungry and try to eat, but would quickly become sick.  I thought I had the flu at first, but when two days quickly turned to two weeks, I realized that it must be stress and anxiety.  My worry was becoming a physical torture.  As I listened to my child cry in pain and frustration, my whole body tense and my stomach in an upheaval, I felt beaten.  As he shook with seizures, I felt my own body shaking with worry.  Doctors said the EEG was negative for seizures as I watched my child convulse; it makes no sense.  I am unconvinced that the tests are correct.  I am left frustrated and confused.  I fear every day that Carter's body is giving out and that Mito will get the best of him.  My husband is the optimistic half in our relationship in regards to Carter's status.  He always says that Carter is okay.  But this time, he was fearful too.  Seeing the worry in his face as we held Carter while he shook, unnerved me to my very soul.  If my husband is sensing and feeling the toll, then it must be real...it must be worse.

Carter was discharged from the hospital on Friday but over the weekend, he cried and screamed in pain, couldn't sleep no matter how hard he tried and refused all food by mouth.  But life doesn't stop, right?!  For a month, we had my nephew's birthday party planned at our house.  So I did my very best to clean the house, make queso dip, rice krispie treats and smile as if all in life was fine.  I took every desperate measure to comfort Carter; from suppositories to pain meds.  We were able to get him comfortable enough to get through most of the party, but he was groggy and restless.  Yesterday was much of the same, but Carter was more calm and less fussy.  He even napped for a couple hours...I knew this could mean that our night would be rough, but was happy that he was resting.  But to my absolute surprise, he slept part of the night and was comfortable and content the other half.  For the first night in two weeks, we got a decent nights sleep.  Boy, what a good nights sleep can do for the mental state.  I feel stronger and less anxious today.  I have even seen unprompted smiles and GIGGLES today!!!  He still isn't taking food by mouth, but he is comfortable and happy.  All the nausea and sore muscles have eased for my body today, as well.  The fear is never entirely gone and my inner nurse is never quiet.  We are doing bolus feeds through his feeding tube, monitoring him with an cautious eye and hoping with all our might that this rough patch is over.  I think I have aged another 10 years in the last two weeks.  But as each smile lightens Carter face, I feel the years falling away.  I feel my body relax and my stress melt away.  Oh how I love this little boy.  I marvel at his resilience and strength despite the every day battles.  I will take a thousand days of my own nausea and anxiety, just to see more good days and smiles.  

And to top off the great day of smiles and relief, Carter's new play area arrived!!! We waited 6 months for this!  Palliative care worked VERY hard to get this approved through the Comfort Fund for Special Needs at Mott Children's Hospital!  It's wonderful and perfect!  Lily is enjoying the ledge and being able to read to her big brother <3

For the love of Carter

I never like to speak of good health.  It's kind of like being at work when you are exhausted and someone starts to utter the words, "It's slow today"...and everyone just about falls out of their chairs trying to stop the rest of the words from touching their ears.  No one wants to jinx good luck.  So that is me as I type about our good happenings lately.  But it's too good not to share.  I want to document these good times as well as the tough.  I want our family, friends and well wishers to know that there is indeed days filled with rainbows and unicorns in the land of a special needs family.  We do get sleep, we do go out with friends and have date nights.  We do have great days when all in the world is fine.  We are just like other families, just with some extra bumps along the way; just like every other family in the world.

Lately, Carter has been very present.  Not just physically, but mentally.  He responds to what we are saying, in APPROPRIATE ways.  He seems to know his name again and he smiles when we come in to the room.  We tell him not to bang his head and he stops.  We kiss his face and he breaks into giggles.  When he fusses and we present him with food, he takes it right away.  He has been falling asleep all on his own in the evenings, long before we give him sleep meds.  This may be TMI to some, but in our world, this is breaking news!  He has been going number 2 all on his own, with NO medication assistance...every. single. day.  Not only is he growing in size, but in his cognitive abilities.  These are the moments that we work so hard for and wish for when the days are bleak.  For the love of Carter, we will fight every minute of every day to have more days like these.  There is so much more to a child who has special needs than the needs that we all seem to think are more than most can bear.  There is so much more to families who love for these special kids.  We don't just change diapers all day or monitor medications...we don't just see seizures or lifting as obstacles; we see them as labor of love.  We find joys in every day out of our son, just like we do in our daughters.  Even though we adore our daughters and we are so proud of their every stride, I must say that there is a different type of joy and pride that we experience with Carter.  To see his smiles at appropriate moments or his head bobbing in tune with a song in the car, is like seeing a miracle happen before our very eyes.  Our hearts become so full, we wonder whether our chests will be able to stretch big enough to handle it.  Changing a poopy diaper that most would run the other direction from, is a monumental moment for us.  We celebrate the fact that his organ functions are WORKING like they should.  We see these things as independence for Carter.  We know that he is never totally out of the woods, but we embrace the day.  We don't take any of these minutes, hours, days or improvements for granted.

For the love of Carter, can we get a high five, fist pump and happy dance?!

He knows me!

One of the toughest moments as a mommy to my special boy was when my husband and I returned from a 5 day cruise when Carter was 15 months old.  I knew that he was delayed and that something wasn't quite right, but I could also only see my perfect, beautiful little boy.  Being with him day in and day out, made it difficult to see the severity of his problems.  By day 3 of our cruise, I was in tears from missing him.  I just wanted to get back home and hold him.  I was sure he was missing me at that point.  When we finally got off the ship and I knew he wasn't far away, I could barely contain myself from the excitement of seeing him.  As I lugged souvenirs and luggage to where my mom was with him, all I could do was stare at Carter in her arms.  I searched his face for a glance or sign that he knew who I was or was happy to see me.  He never even looked at me or smiled.  He didn't seem to know who I was.  At that moment, my heart broke into a thousand pieces and my mind shut down.  I cried.  I simply cried.  It was the first time I could see so clearly that something was wrong.  My baby didn't even realize I had been gone for 5 days and if he did, he didn't show it at all.  It was a shock to me.

Now, 4 years later...Carter COMES to me all on his own.  He smiles when I walk in the room, he scoots to me no matter where I am in the room and he reaches for my hands to stand up with me or sit on my lap.  He knows who I am.  Today during therapy, he did everything he could to get to me and avoid doing what his therapist wanted him to do.  He was at school all day, so just wanted his mommy since getting home.  When I kiss his face, he smiles and giggles!  He reaches for my face when I lay next to him.  I can't even begin to construct the right words to describe how amazing it is to see these things.  It's something I waited so long for and was never sure if I would see.  Carter is my true miracle.  I savor and cherish every glance, smile, giggle, effort and acknowledgment that he gives me because I know how hard he has to work to give it to me.  Carter may not be able to talk, but he speaks louder than words.