Friday, April 11, 2014

Embrace the Day

I just finished getting Carter ready for his 5th full day of school in a row!  He has made it to school an entire week!  I can't remember the last time this has happened!  Between appointments, hospital admissions, snow days, holidays and sick days...a full week rarely happens.  I am hopeful that these full weeks will prevail now that the worst of the weather is over.  Carter always does much better during the warm months.  These great weeks do wonders for my body, mind and sanity.  All the hard work, hoping and worrying all boil down to the important things in life...happiness, peace and quality of life.  This week is a big victory!  My heart has gotten the little break it needed.  My little warrior has kept all of his food down, smiled, cooperated in therapies, slept through the night and been all around healthy this week.  What I wouldn't give to always have days like these.  My only worry today is getting a couple of Carter's prescriptions authorized and filled.  Anything else is being left in the dust of my escape.  I am not going to worry about tomorrow.  Raising a child with severe and complicated medical problems teaches you things that really matter in life.  It changes you drastically.  I don't have control or choices in many things anymore, but there are some things I CAN control.  I can control the way that I handle problems or struggles; I deal with them when I absolutely need to and forget the ones that don't directly effect me.  I learn to embrace the now; to let go of my mistakes.  There is no room for crap and the reality is; crap doesn't matter.  And if we didn't have rough days, weeks or months...would I truly appreciate the weeks like this one?  As hard as the times can get, I still have choices.  Choices in how I handle them.  In the big pictures, aren't the good weeks really about the little things?  Tolerating the food we are given, smiling, cooperating in what is necessary, a good nights sleep and good health?  It's not just for those who have medical struggles.  All the other crap, is just crap.  So as we admire the beautiful spring sunsets and sunrises, lets not forget or become complacent to their beauty for winter will come again and we will miss days like today.

Monday, March 31, 2014

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 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

Monday, March 10, 2014

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?!

Monday, March 3, 2014

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.

Friday, February 7, 2014

Terrible 2's and Good Samaritans...

I don't know about you, but I have days...sometimes weeks, when I am so mind boggled that I drive myself insane.  I'd like to think it has something to do with hormones or weather.  I mean, there has to be a reason, right?!  So any way, I wake up yesterday just like every day...with lots to do.  I got Carter off on the bus, took a shower and had my husband help get our daughter dressed for the day.  For once and in over 6 months, I had an appointment to get my hair done (at 9:00 a.m.), so I was roaring to go.  But, of course, we were running behind.  This time, because Lily woke up on the wrong side of the bed and she had plans of her own.  She screamed, kicked and refused to get dressed.  We had to do what all pre-parents say they will never do...we bribed her until she gave in.  A hair appointment is rare and exciting for a busy mom, so I was going to get out that door however I had to.  I told her, "We will go shopping today, okay?"  That worked.  And just like any other chaotic morning, I still needed to get gas, a coffee and cash out of the ATM.  And because I was still lacking my first cup of coffee, it was difficult to map out the faster route to hit these places so that I wouldn't have to back track and burn more time.  But we managed to make each stop with minimal back tracking and get to my appointment.  The musts for my day were to get a few necessities at the grocery store and get Carter off the bus by 3:30.  Getting my hair highlighted and cut took much longer than I remember it usually taking...but when I don't get it done but twice a year, it's easy to forget.  We left my appointment around noon and headed to the store.  Once I arrived, I found my 2 year old fast asleep in her car seat.  Now, we all know that mommy law is to NEVER wake a sleeping child.  Ever.  So I headed back home to let her sleep and I could connect to our home wifi for some Facebook time and quiet music in the comfort of my driveway.  I could tell right away, that the driveway conditions weren't looking good and just as I started to second guess my choice to gun it any way, my van came to a screeching halt and I mean, screeching halt.  I was stuck half way in to my drive way (the back half of my van completely in the street still).  For peets and pickles sake.  Forward, back, forward, back...nothing.  I was STUCK good.  My wonderful neighbor quickly came to my rescue with her shovel, kitty litter and phoned a friend with 4 wheel drive to come help.  A very nice stranger driving by, even stopped to assist us with shoveling.  45 minutes later, I was unstuck. By then, Lily was awake and remembered my promise to take her "opping mommy" but it was so close to Carter's drop off time, that I couldn't take her shopping.  I hopefully promised her that we would go soon.  10 minutes before he was expected home, I noticed a gigantic van stuck at the end of our street (from my couch view out the window) and as the minutes dragged on and it wasn't budging, I decided to call school transportation to tell them I would meet the bus at the McDonalds up the street.  On my way to meet the bus, Carter's physical therapist called to say she was 5 minutes away and would brave our mess of a street.  Conveniently, my still very whiny 2 year old starts screaming for french fries and "opping momma".  I decided against going to that  drive thru since I also got stuck there the day before and headed to the next nearest McDonalds, because as most mothers of terrible 2's will do, we will go to desperate measures for the screaming and whining to stop even if for only a few minutes.  I chatted with my dad on the phone while I drove and vented about the poor road conditions.  About 15 minutes later, the physical therapist called again and asked, "Did Carter's bus run late?" OMG...I forgot the therapist was on her way.  I felt like a total jerk making her wait all that time.  I hurried home and unloaded my children all the way from my curb parking (because I was too chicken to try pulling in the driveway again).  Now, any time anyone is coming over, even the therapists who are here 4 days a week, I tidy and vacuum but that hadn't happened that day.  I was mortified and defeated at this point.  But what could I do?!  I texted my husband that as soon as he got home, I NEEDED to get out the house to recoop from my hellacious day.  As soon as he walked in the door, he insisted that he needed to run to the gas station for salt to throw on the drive way.  I could have cried...10 more minutes felt like hours.  When he returned home, I don't think he even turned his truck off yet and I was running out the door with my coat half on and my hand thrown up in a peace sign as I ran down the drive way to my getaway vehicle!  I left for a good hour to get groceries and pace the canned vegetable aisle.  Anything for some quiet time, right?!  It's amazing what a good, quiet hour can do for your mental stability.  I was lucky that Lily forgot how badly she wanted to go "opping momma".

Today went somewhat the same, except my 2 year old was off to daycare first thing in the morning...which also started in a screaming, kicking, "I don't want to" kind of way.  But after some coaxing and convincing, she was ready to go.  I also got a text from our respite nurse that she was really sick and couldn't come this evening.  A kink in my planned out day, but I knew I could pull off my day any way (no other choice, right?!)  And on top of an already busy day, I woke with a head cold.  Lovely.  Once both kids were out the door, I got a shower and started chores around the house.  Laundry, tidying, vacuuming, kitchen, calendar, and making beds.  11:00 rolls around and I get a text from a friend, "I'm at Panera, are you here yet?"  Oh crap!  I almost forgot I was meeting her for lunch. I threw on a clean shirt, my tennis shoes and coat and ran out the door.  I managed to get there about 10 minutes later.  We chatted and hung out for a couple hours before we both had to go our separate ways.  She also has a special needs child so it was great to share our stories and sincerely understand each others good for my heart.  As soon as I got back home, I did another load of laundry, chatted with my grandpa on the phone for a bit and had to hit the road again.  Gas and coffee pit stops on the way.  Because our respite nurse wouldn't be coming to get Carter off the bus while I drove to Marshall to get my step-daughter, I had to pick him up from school instead.  I got him out to the van and all was going as planned when I realized I hadn't unloaded the play kitchen that I had put in the back of the van the day before.  So I mustered all my strength to lift and maneuver the wheelchair into the back on top and beside the kitchenette.  This also meant moving Lily's car seat to the back seat with the bench seat half folded so that KayLeigh had a seat in one of the bench seats.  I made it to Marshall on time and got KayLeigh.  Headed back to Jackson to get Lily from daycare, but first...had to drop off the kitchenette to make room to reinstall her car seat.  Then off to the daycare.  As soon as I picked her up, she was overly tired and wanting to be held. Luckily, daycare is only a block from home so I didn't have to endure the screaming for very long.  Almost as soon as we got home and unloaded, both Carter and Lily fell asleep.  Lily across my lap and no way was I waking her up to start dinner.  So I waited until she woke up (about 45 minutes later) and luckily, her new kitchenette preoccupied her so I could start our tacos.  As soon as we finished eating and I folded one more load of laundry, KayLeigh and I went shoe shopping for her father daughter dance that is tomorrow.  That eventually leads me here at my lap top and typing this crazy 2 days out.  Somehow this evening, despite giving my voice a break, I lost it because of my cold.  No voice at all.  

Not all weeks are this insane, but this just happened to be one of them.  I am so thankful for my helpful husband, trusty mini van, good neighbors and samaritans, coffee, winter boots and tough nerves.  So thankful.

Sunday, February 2, 2014

Ups, Downs and in Betweens

This last couple of months there have been changes with Carter that are alarming and confusing.  In the middle of the night, we will check on him to find he has very high fevers (105), shaking and foam around his mouth.  We are able to bring down the fevers with tylenol and motrin (over a 2 hour period).  Once the fevers are gone, he has no symptoms of an infection and no more fevers.  The foam around his mouth can only be explained as seizures.  I talked to his neurologist about this a couple weeks ago and she thinks he has autoimmune issues.  We have always noticed that he over heats easily if he's over dressed or outside too long in the summers.  And if he gets sick, his fevers sky rocket fast and stubbornly.  But never in his life have we experienced spontaneous fevers and seizures.  This happened again this morning around 3:30 a.m.  I heard him making odd noises, so ran downstairs to check on him.  His face was covered in a sticky foam and even his shirt and arm were covered.  I cleaned him up, checked his temp (105) and gave him tylenol immediately.  I laid beside him for an hour and rechecked his temp (still 104.8) so gave him Motrin.  It finally came down.  While I was running errands early this afternoon, my husband witnessed another seizure-like episode (eyes rolled back and mild shaking).  I called the on-call palliative care doctor to discuss these terrifying spells.  The doctor called his neurologist and discussed the issues.  The neurologist called me back and said to up his phenobarbital and use Clonopin if we see more episodes.  That's it.  We are left to fear and wonder what is causing these changes and have been instructed to take him to his primary care doctor this week if fevers or seizures persist.

Last week, I also took him to the eye doctor for an exam.  I was very nervous about this appointment because Carter pokes his eyes constantly and I have been so worried about what kind of damage he may be doing to them.  The eye doctor noticed right away that Carter's pupils do no respond to light.  We have always noticed that and wondered why.  We have always said he is our little owl.  The doctor said it could either be from his muscle relaxers or issues with his nervous system.  She said she sees it in adults and children quite often.  The good news was that she didn't see any damage to his eyes from the poking.  The bad news was that she worries that the progressive aggression to his eyes could be from a neurological issues that could cause him to be blind.  The anatomy of his eye is fine and functional, but it is very common in people who are inflicted with Mitochondrial Disease to lose their hearing or vision due to the brain not processing what it sees or hears.  She referred Carter to a specialist who can do more extensive testing to determine how well his brain is processing what he sees.  Now we wait.  His appointment at the specialist on February 21st.  Once we know whether he can see or not, we will order tinted glasses to protect his corneas from the UV light and hope that this will help him explore and look up more (when light isn't so bright to him from the dilation).

Just when his development is at it's best and he seems to be on the upswing after a rough fall with pain and aggression...we face new challenges.  We face more unknown and more fears.  I am left to re-evaluated and make new plans.  This past month, Carter's motivation has waned and he doesn't seem as eager to cruise and play.  Seizures are always a huge risk for him and my heart is telling me that this is the issue.  My Monday will be spent making more calls to his specialists to ask what we do now.  I'm not a wait and see kind of momma...I want testing and answers.  I want my son to be safe.

This journey as a mom to a little boy whose life changes from moment to moment, I don't think my mind ever really relaxes.  Fortunately, he has stayed out of the hospital since early November and I am hoping we can keep it that way.  But if these fevers and seizures don't stop, I worry he will end up in the hospital soon for testing and observation.  

On a positive note, I created a team this past week called "Energy for Carter" to raise money that is being donated to Special Olympics of Michigan.  Our team has raised 75% of our goal of $400.  Yesterday morning, my twin sister and I took the plunge and jumped into a frozen lake in Carter's honor!  We dressed up in 80's gear and represented our little warrior!  We were even interviewed by channel 6 news before we plunged.  A lot of people have asked how it only response is "COLD!"  But it was worth it for the amazing cause.  

Monday, January 20, 2014

Happy 5th Birthday, Carter

5 years ago today, a hero was born.  Actually, in one hour and 6 minutes from now, to be exact.  At the time, we didn't realize that we would be mom and dad to a little boy who would one day wear a super hero cape and have endured things in his life, that most children never do.  We had no idea that he would be splashed across front pages of papers, articles on Yahoo or in the national archives and newspapers across the country.  We never knew that therapists, teachers, doctors and nurses would become our saving graces.  People that we least expected to be huge in our lives, appeared.  We have learned so many things about life, that we never dreamed possible.  We learned to take every baby step with caution and pride.  We appreciate the simple things in life and cherish every single day with this child who has blessed our life.  As hard as it is to believe that he has been with us for 5 years already, it's also just as hard to believe how much he has been through in those years.  A lifetime of memories squeezed into moments.  I've lost count of the needle pokes, hospital admissions, appointments, tests, trials and errors. But one thing is for sure, Carter is a fighter!  I am so proud of his for all that he has accomplished, over come and for smiling through all of his trials.
Over the weekend, we celebrated his birthday with close family and friends!  The show of people who love and support Carter, was amazing!  Our house was full of love!  We are always cautious of having too many people around at one time since Carter gets so overwhelmed these days, but yet again, he surprised us!  He did great and enjoyed all of the attention.  
As we start Carter's 6th year of life, my biggest hope is that it is even better than the last and that we can spend the next year surrounded by all the same wonderful friends and family.  Rock on, my little super star!  We love you to the moon and back!  Happy 5th Birthday, Carter!