Blogging with Paxton

Spent the last hour helping my friend Paxton start her blog!  She is so excited to join the world of blogging and share her inspirational story.  Paxton is living with non-classic spastic quad cerebral palsy.  Paxton is 11 years old and has already shared her story with many through her role as an Easter Seals representative child in 2006-2008.  Paxton not only has an amazing smile but she has a wonderful outlook on life!  She continues to show us all that nothing will hold her back from doing what she enjoys and loves in life!  I hope that her blog will bring her connections with others living with CP and form friendships to last a lifetime.  Good Luck Paxton on this journey and I can't wait to read your next blog entry!  

My Apple has a Heart

As a Mom of two special needs children I hear, "everything happens for a reason", all to frequently. Sometimes this statement hurts and I often wonder, what reason is there? Since the birth of my children I have asked God, Why, more times than I can count. Even though I feel like I've never received an answer, I face each day with an open mind and an open heart! When I became a Mother 9 years ago I quickly realized that many life experiences had prepared me for what I might face in my life as a Mom. As a child I wanted nothing more than to be a nurse working in a hospital taking care of others. When my grandmother passed away I took care of her in the Hospice House in Merrimack. The nursing staff often commented on how I should go into nursing and some even thought I was already well on my way to a degree. Apparently, taking care of others just came naturally. Moments before my grandmother passed away I promised her I would go back to school and fufill my life long dream. During my clinicals and time at Harris Hill Nursing Home as an LNA I realized my dream to be a nurse had a greater meaning. I've always believed God has predetermined our life's path. Those things that come naturally to us, are God's way of helping us stay on our path. God didn't create a little girl who was going to be a nurse, he created a little girl who was going to be the Mother of two very special little boys. I truly have come to believe God was preparing me for the endless surgeries and post operative care, even as a young child. It most definately was my destiny to be a nurse, but not a nurse with a degree. I was destined to be Chase and Carter's Mom. I've had many moments where I stop and realize that God is reminding me of his presence in my life. Showing me how my life experiences helped prepare me for the challenges I would face with my children. Lastnight, after a very trying day at Children's Hospital Boston I was given one of those reminders. In 3rd grade, I was in a very serious accident. While riding my bike on a back road in Maine, I was struck by a large utility work truck moving at a high speed. In the moments of the crash my parents could hear the screeching tires but they could not see the road. Frantically, they ran to the scene to find me bloody, injured and in need of medical attention. The speed and force of the truck could have very easily taken my life, but someone was watching over me. Our family realized how blessed we were that day and we Thank God for intervening and saving my life. During my recovery my parents decided to prop me up with pillows and blankets in our pick up truck, and head to the apple orchard for some sunshine. Only a few days after my accident we were all still pretty shaken and my injuries didn't allow me to walk around the orchard. My parents pulled the pick up truck right under a tree so I could pick some apples. I reached up for an apple and when I took a closer look, my bright red apple had a perfectly shaped green heart on it! I remember calling my parents over to see my apple with a heart, and they told me that was God's way of telling me he was there during my accident. This was my first memory of feeling God's presence in my life. Somewhere deep in my basement I have a photo of me in the pick up truck holding up my special apple, a moment I will never forget. It was lastnight that I was reminded of this moment and it brought me to tears. After our visit to Boston Children's Hospital yesterday with both boys we felt drained and overwhelmed. Chase and Carter will be having surgery, on the same day at BCH, to have their tonsils and adnoids removed. For typical children this is a simple procedure and recovery is filled with popcicles and ice cream. For children with special needs this procedure tends to be more involved. Due to Chase's heart disease and pacemaker extra precautions need to be taken. Putting our feelings aside we pushed through the night and dove right into preparing for surgery. Chase's pacemaker comes with an external device that we put over his pacemaker, and through our phone it sends a complete report of the pacemakers activity and stats directly to his cardiologist. In order to clear Chase for surgery his cardiologist will need to review his current pacemaker stats, so we got a jump start on things and sent it right away. After sending the report I registered his pacemaker online so that I can easily track his transmissions through the companies website. Technology is amazing and being able to instantly view the transmission and receive text alerts when they are due is great! Part of the process to register his pacemaker is creating a profile for Chase. Basic information is needed along with the serial number of his pacemaker to complete registration. The very last step of registration is to choose an avatar for your child, similar to the avatars they might choose for a video game system. As I clicked on the box to open the avatar choices, there was one that stood out so much, I honestly couldn't even see the others. The avatar was a bright red apple with a perfectly shaped heart on it! My eyes filled with tears and at that moment I could feel God's presence. He was reminding me that though our road is tough, He is always there, and has ALWAYS been there. Since I was a young girl God has prepared me for the challenges I would face as a Mother and He is always reminding me of how far I have come, and how far I will go! Today, I am taking a moment to remember that my journey as Chase and Carter's Mother is my destiny, my fate, my childhood dream! Today, I am thankful to God for showing me once again, that my Apple has a Heart!

He Has a Story to Tell

In looking back on my blog, after a 2 year break, I noticed my blogging slowed down dramatically after Chase was diagnosed with heart disease. I created this blog to help me cope with Carter's diability and when Chase became sick I think I gave up a little. Since then I have really accepted my childrens medical challenges and I don't feel so broken. I feel however, that I skipped some very important moments in Chase's life that led up to his recent journey across the country! So I shall take it back to where his journey started... Shortly after Chase turned 5 in May of 2009, he became ill. At first, he experienced low stamina and some asthma flare ups. We took him to the doctors many times because the symptoms were not improving and they kept him on regular treatments for asthma. Over the next 2 weeks Chase became very sleepy and sometimes lathargic. He was always talking about being 'tired' even if he had just woke up. His stamina worsened and he couldn't run or play with his friends or his little brother. Chase continued to sleep, heavily at times, it became very scary. Day by day it worsened and we couldn't figure out what was wrong, we felt so helpless. After weeks of worsening symptoms we went to his primary care, desperate for some answers. After listening to his heart during the exam the doctor said "something doesn't sound right, let's get an EKG". I wasn't really too worried, I hadn't even thought of the possibilities of something being seriously wrong. I headed to the hospital with Chase thinking the test would show nothing but a healthy heart. When the cardiologist came into the room after the EKG I could tell instantly the results were not good. The look on the Doctors face scared me and I instantly started to panic. My breathing got quick and shallow, my palms were sweaty, my head felt dizzy, I was spinning out of control. The cardiologist saw my panic and quickly started to lay out the details in what seemed to be a foreign language. "Your son is in complete heart block", he said to me as my brain searched for logic and answers. There was no logic to be found, and I started firing questions at the cardiologist, "You mean he has a blocked artery? How can this be happening? Do you know about his brother, Carter?" After I stopped rambling, he explained things to me in a way I could understand. Chase did not have a blocked artery, it was much worse, his heart had NO electricity! It just stopped, and when it did his heart pulled twice the amount of blood in, working twice as hard to pump all the extra blood out. Without the 'electricity' his heart was working extremely hard to keep pumping, causing his heart to enlarge. The massive stress on his heart was causing his heart rate to slow dramatically and no amount of activity would increase it. The only treatment for Chase was to have a pacemaker implanted and he would need one for the rest of his life! This was very hard for me to wrap my head around and I was in complete denial. I kept asking the doctor how this could be possible, how could both my children have such unusual medical problems. I wondered how I would go home and tell Mike this devestating news. We left the cardiologist with a holter monitor for 24 hours and a follow up in Boston with a pacemaker cardiologist. With this news I left the doctors office feeling numb. Telling Mike was so difficult for me, even more difficult for him to hear and accept. We were both devestated and wondered how one family could face such hard times. We questioned God's role in our life even more than we did when Carter was born. I wanted to wave a white flag for God to see and I wanted Him to hear me ask WHY? WHY? WHY? I wanted answers! Shortly after his diagnosis and consult in Boston he became extremely sick, all he did was sleep. Chase, my once rosey cheeked and smiling, child, was pale and lathargic. I sat by his bed each night checking his heart rate obsessively and each night it went down. I was a nervous wreck every second of every day. The words the doctor said to me that day as I left the office kept ringing in my head, "Do you know CPR? Because if he collapses you will have to keep his heart going until help arrives". We searched for answers but there was no reasonable explanation for Chase's diagnosis. He did not fit the typical circumstances for Third Degree AV Conduction Block. Quickly his heart rate started to drop daily. First he was in the low 60's, then he quickly dropped to the 50's and it continued to drop each night. The situtation became very scary when his heart rate was in the 30's and I could barely feel it. That night his rate dropped to the 20's and his heart was in extreme distress. I knew this was bad and was scared that it happened so quickly! We called the cardiologist and he set up emergency surgery for the next day to implant the pacemaker. Preparing for our trip to Boston Children's Hospital was strange and difficult. I kept having to remind myself which child I was packing for. We had already faced so many surgeries with Carter at BCH that my mind was on auto pilot. For the first time Carter would be staying with my Mom, instead of Chase. Carter would be visiting his brother, instead of Chase. Mike and I were still in denial but we managed to go through the motions, as we had before with Carter. On the morning of his surgery Chase was very lathargic and his skin was so pale we could see every vein in his body. His skin color was ashy and grey and there was no color in his lips. I remember asking God, is my baby going to die, are you going to take him from me? Most of the pre-op in the Cardiac Unit leading up to the surgery is a complete blur but I do remember how happy Chase was that the nurse gave him a new lego set to build! As we waited and worried I snapped several pictures of Chase building his lego set. At that very moment, looking at Chase through my camera, I saw how sick he was really was and I asked God to protect him during his surgery. Before we knew it he was taken into surgery and we began the WAIT. This was not the first time we sat waiting for a child to come out of surgery and it wouldn't be the last. The clock seemed to move so slow and we anxiously waited to see the doctor emerge from the double doors. Finally we saw the doctor walking our way and I think I may have stopped breathing while waiting for him to speak these words, "Chase did great and the surgery was successful!" Once Chase woke from the anesthesia we instantly noticed his color was back! His cheeks were rosey and his lips were pink, we couldn't believe it! The minute he sat up in his bed he said "Mom, I feel so much better, can we go home?" I was shocked! The cardiologist was right, the pacemaker would be like a switch, and once he flipped the switch, the life would be brought back to Chase's body. The blood was flowing and Chase was smiling and we felt such great relief! Having a pacemaker would keep his heart working properly and with some minor precautions he could have a productive and active life! We saw a different child after the surgery, energetic, healthy and full of life. The cardiologist gave Chase a copy of his xray showing his pacemaker and the two leads to the heart, a very cool picture for Chase. His pacemaker paces 100% of the time in the bottom of the heart and 30% of the time in the top of the heart. He has regular check ups at BCH to make sure the pacemaker is running properly and to check the life of the battery. Every 7 years or so, Chase will have his pacemaker replaced as the battery runs down. He has had to learn what is safe for his pacemaker and what is not. Chase's school has made accomodations to make sure he is safe around modems and amplifiers used in the school setting. Overall, having a pacemaker doesn't have a lot of drawbacks and it definately serves a very powerful purpose, life! Three years later, I write this blog with a more positive outlook on life. I look at my children and I see their amazing strength and courage, and from that I find happiness. This is Chase's journey and I am blogging about it because He Has A Story to Tell!

Sometimes We All Need a Gentle Nudge

Today a dear friend asked me to re-share my blog url...I was embarassed to say I had not blogged in several months! As I opened my blog tonight I realized several months was really 2 YEARS! I started this blog as an outlet after Carter was born. I found myself needing some "Dear Diary" moments and my blog was the perfect solution. After I started blogging I found it to be so therapudic I never wanted to stop...but clearly I did! I have so many amazing things to blog about but I think I shall start with a quick update. Then I can really get back into blogging and share some more detailed stories of our amazing life as the Meads! The 1st big change in our life is our new HOME! About a year ago we moved into our home in the north end of Manchester, after a long year of renovations. We have a cute little ranch on almost an acre of land with a great tree house in the woods for the boys! The best part of our house is that it is OURS! We are not completely settled but we have forever for that! When we bought the house it needed major work. So we gutted it and started over! The best renovation was making it handicap accessible for Carter. We opened up the livingroom and kitchen area and added an elevator! Yes, an elevator! Here is our Home!

Chase is now 8 and Carter is 6! If you know how to freeze time let me know! I never want my family to change, I wish I could live in this moment FOREVER! Both boys are attending Smyth Road School, Chase is in 3rd grade and Carter 1st! WOW, it is still hard to believe how much they have grown! I will save more detailed updates on the boys for more blogging. Don't worry I won't wait 2 years again! Here is an updated picture of the boys on the 1st day of school!

As for Mike and I, we just celebrated 12 years together! We love life and our family time together. Over the past couple of years our family has really become involved with Easter Seals. We enjoy raising money and awareness for Easter Seals. I have done a lot of public speaking for ES and shared our story with others. Our family begins a 2 year term as the Easter Seals Rep Family in November of 2012! This is such an honor and will bring us many great memories with our Easter Seals Family! We have already started to attend events and I promise to blog about them! Here is a photo of us at a recent ES event. In future blogs I will try to post some videos of our family being interviewed for ES in front of 600 people!!! I will say this, Chase made everyone laugh during our interview, as he always does!

There are so many new and exciting journeys coming our way and so many we already experienced and I can't wait to blog about them all! Stay tuned for blogs including Chase's big trip to California, Carter's new prosthetics and Easter Seals adventures and fun family photos from our 1st year in our HOME! Sometimes we all need a gentle nudge to do the things in our life that make us feel better. Im thankful for the person in my life who gave me this nudge, always shows his love for my family and always inspires me to be the very BEST person I can be! Thank You and I dedicated this blog to YOU a very special friend!

The Sun Shine on a Rainy Day

There is a new theme in my life. Happiness. Who would have thought? I most certainly didn't. After 4 1/2 long hard years I have come to place of happiness that I did not believe was within my reach.

Today, Carter was a guest client at Next Step Orthotics & Prosthetics, Inc. http://nextstepoandp.com/ for a tour of the facility along with demonstrations. Carter, My father and I met John Stephen, Republican candidate for Governor. Mr. Stephen asked Carter if he could have his picture taken with him. Within seconds Carter had posed himself, arm around Mr. Stephen, prosthetic leg over Mr. Stephen's leg, (to make sure of course the camera was able to get a good angle of his prosthetic) and head resting on Mr. Stephen's shoulder ever so perfectly grinning his best smile! A moment of amazement flows through me and I realize that my son is on his way to making a difference in this world.

Throughout the afternoon, Matthew J. Albuquerque, CPO, owner and vice president of Next Step O&P referred to some of the challenges that our family has faced and overcome and everything came to fruition for me. The growth that has come of this heartache was being shed in a new light. For once, I did not see the rough road ahead of us, I saw the rough road behind us. Seeing Carter impact peoples lives right in front of my very eyes was amazing and surreal.

His independence and ability to socialize with people of all ages is something very special. Without the amazing prosthetics that Next Step makes for Carter he would not have the confidence he exudes every day. During a demonstration in the prosthetic and orthotic fabrication room we were able to see the different steps it takes to create a prosthetic limb. Each client is given the oppurtunity to make the prosthetic their own by choosing how it will look cosmetically. An extra that Carter gets on his prosthetic is a fabric inlay of his choice, of course he has chose spongebob for his last two legs. Not only does this involve the client in the process it gives them something far more important, Pride and Confidence. I shared with the group that for Carter the fabric is not just a fabric, it is something far more important. On his 1st day of pre-school he was confident and excited to show off his spongebob leggy and it opened an oppurtunity for the other children to relate to Carter. The relief that gives me as a parent is priceless.

Before leaving the event a guest pulled me aside to introduce himself. He starts by telling me he had the privlege of sitting with Carter at lunch and enjoyed hearing his stories. Wayne Penn, Biomedical/Mechanical Engineer for DEKA Research & Development Corporation along with a few clients of Next Step including a man who uses a Deka Arm, http://nextstepoandp.com/PDFs/Apr10_EDGE-What%27sNext-DARPA.pdf, listened to Carter describe his first time at the ocean. He tells them that he didn't like the little waves because they were boring, he liked the big waves because they were fun to boogie board on! Hearing Wayne recount his lunch with Carter filled me with such joy and happiness. Carter has already made such and impression on thousands of people and he is only 4 1/2 years old, this is truely a blessing!

Being a part of this community of people has changed our family forever. The amazing people we meet along the way is what gives our family Hope and Strength. Over the past couple of months our family has experienced so much happiness that all the dark parts seem to fade. Truely, Carter is our SunShine on a Rainy Day!

Great Friends are Great Treasures!

Carter celebrated his 4th Birthday this week! So many milestones have been reached in the past 4 years by Carter it is amazing to look back and reflect on the day he was born. Just a little over 6 lbs when he was born I saw a fragile baby with many obstacles ahead of him. In the past 4 years he has become a brave boy that handles his unique life with smile that brightens anyones day!

The night before Carters Birthday we talked about how he was turning 4 and did some practice counting for his big day. As soon as he realized he could not count to 4 on his fingers he blurted out "Mommy I wish my fingers weren't stuck together, maybe a wizard will fix them for my Birthday"! Outta the mouths of babes as I always say!

This wish made Mike and I think a lot about how he will count growing up with only 3 fingers and 4 toes. Not that we haven't thought about this before, but now it was more prevalent on his 4th Birthday. We always joked he could take off his right shoe and use his 4 toes to count!

The morning of Carters Birthday, Mike, Chase and I woke him up by singing Happy Birthday in bed. As soon as his eyes opened he started to look at his hand and asked us to turn the light on. Once the light was on he looked again and said "Aww I didn't get my wish". This broke our hearts.

Over the past couple of days our friends and family have given us many ideas on how Carter can count higher than 3 on his fingers. My favorite idea was having his friends and family help him count by lending him their fingers to add to his. It is just so priceless to us having moral support from our friends and family.

This morning I brought cupcakes into Carters school for his Birthday. When I arrived all the children where playing except for Carter and his best buddy Noah. They were at the table with the teacher making something. I let them continue what they were doing and just sat back and watched. Noahs hand was copied on a piece of blue construction paper and Carter was holding a green birthday crown he had made. The teacher cut out Noahs hand for the boys and attached it to Carters Birthday Hat. You see, Noah lent Carter his hand for his hat so that it showed he was 4 years old. Atop Carters hat was Noahs little hand with the thumb down showing his 4 fingers!

Today Noah made Carters wish come true by being his "counting wizard"!

Thank You Noah for standing by your buddy and helping him out when he needed you. You are a very special boy with a very special heart!

I will never forget what Noah did for Carter and I will never forget how lucky we are to have this family in our lives!

Great Friends are the Greatest Treasures!

Remembering my Grandfather

Today my father and I spent some very special time together remembering a great Man. I took Dad to Veteran's Memorial Park to see my grandfather's name on the Memorial. We walked around the park checking out the memorial. I brought paper and pencils and did some rubbings of my Grandpa's name. After we spent some time at the park we went for ice creams at Ben and Jerry's. I felt like a little girl again. Not only did it make me feel close to my Grandpa but it made me feel very close to my Dad again. With the hussle and bussle of everyday it has been hard to be Daddy's little girl. I know now that time doesn't change anything I WILL ALWAYS BE DADDYS LITTLE GIRL, and I will cherish today forever! I love you Daddin!

Happy Birthday Dad!

October 15th is my Dad's Birthday! Had a nice celebration with my brother and his family this past Sunday night. Can't wait until my other brother comes to visit in November.

I love you Daddin!

Happy Heart

It's almost like he is dancing on cloud 9 with his new leggy. Carter has been so excited for today and it finally came! Again, I can not express enough how much we love the work that Next Step does for Carter. Scott and Dave (all the Daves) put their heart into making Carter's leg and it shows with the beautiful finished product. Since he got home he has been running around the house and dancing around. He is beyond happy right now.

Just want to add a note that "The Daves" put Spongebob and Patrick on the front like "brothers". I love it! That's using your noggins!

My heart is swelled with happiness!

A Smile A Day

If there is one thing I have learned over the past 5 years is that change is inevitable. Children are forever changing and before you blink they change again. With all of the physical changes Carter goes through comes prosthetic changes. Recently we discovered that Carter's gait issues were due to some weakness in his thigh muscle and tightness in his hip flexors. The gang at Next Step made many changes to his alignment but with each change came a new gait issue. There was no happy medium to be found. So Next Step did what they do best COLLABORATE! You know the saying "2 heads are better than 1"? Well in our case we have all the brains at Next Step collaborating to come up with a solution that will help Carter with his gait and stregthening his leg muscles. While we were in NY Next Step made a tie corset with knee joints to attach to Carters exsisting prosthetic to provide knee stability. I was confident it would make a tremendous difference for Carter. However, I still feel pain for my son having to deal with more equiptment just to be able to walk, run and play. Today Carters tie corset was added to his prosthetic and the instant change in his gait was amazing. As the day went on his gait continued to improve. The tie corset does restrict him a little bit but he is already finding ways around it. I say that like IM suprised, which I shouldn't be. Carter always finds a way to do what he wants. Tomorrow will be Carters 1st day of school and I will be going with him to see how he manages in his new environment with his new equiptment. I have no doubt he will have a great 1st day at school.

Carter doesn't know anything but happiness! His smile keeps me going everyday!

Thank You everyone at Next Step for all that you do for our family!