Thursday, June 5, 2014

Schools out for Summer.

Schools out. I have the Brave Heart quote in my head "It's all for nothing if you don't have freedom" which rings true in so many ways. You need a break, kids need a break, If you don't have the freedom to live your life, you will never live, you will just go through life. Summer is one that I have always looked forward too. I get just as giddy now as I did when I was in school. The thought of waking up with my babies and lounging the mornings away drinking coffee watching them play games together around my coffee table seriously makes my heart happy. The having no plans when you tuck them into bed, then waking up and thinking "today is a beautiful day for the beach, LETS GO" The thought that if the mood struck and we needed a Havasu run that we could literally pack and be there in 5 hours and be welcomed with open arms by Aunts and grandparents makes me happy. I love summer. No stress, swimming all day, lounging with a cocktail in my hand at night watching them play out side, giddy I tell you. I seriously love summer.
This summer however, this summer, its different. We should be in the pool right now, its the first day of summer, the last day of school.  However for the next several weeks we won't be. Tomorrow we should be driving to Santa Barbara for a weekend away with an organization that takes special needs kids out to surf. We won't be going.  Next week we should be driving out to Havasu to spend a few days with family out there. We won't be going. Instead this month is filled with Zio Patches that monitor your hearts rhythm that can not be submerged in water, heart cauterization procedures with overnights stays in the CVICU (cardiovascular intensive care unit), 10 day recovery periods from her surgery, all things that if you would have told me a year ago would be the way we were spending our summer I would have told to get behind me satan. But its happening, its real, and its seriously bringing me down. Trying to stay positive that its going to be awesome, and there is nothing to worry about its getting hard. Especially when I have a 6 year old screaming and crying back to me saying "ITS NOT FAIR!!!! I HATE CARDIMYOPATHY!!!" I hate it too, and I shake my fists in the air and say "damn you cardiomyopathy" at least twice a day right now. Wondering how many Slurpee's she can be bought with to get her out of her funk, How many times I can convince her that we don't need to go swimming, we could have way more fun playing in the sprinklers.
This summer is different, but this school year has been different too. This summer we started school like any other year. Come November I only had 3 kids in school, Tara was taking out due to exhaustion. Come January I had 2 kids in school and Elijah doing online home studies (which worked out great, but looking forward to him going back next year).  Tara finally started going back to school full time 9 days ago...yes, she had 9 full days of school before school was done. She went back to school with a full time nurse, and next year will continue with her. Next year we have also chosen to keep her in first grade for another year. Technically she "passed" first grade, and could continue moving on to 2nd grade, but she is behind. She missed 5 full months of school, and even now her stamina is not up to where it should be. So Jim and I together talked about it and brought it up to her teacher. Her teacher left the decision up to us, but agreed that it would be the best decision for her. I love that she supported us and encouraged us to do what we felt was right for her given the circumstances. So next year she will continue with an leg up on the up coming first graders instead of feeling that she is 2 steps behind with the 2nd graders. This also gives us the time we need if she needs to be out again for what ever reason.
This summer is different, but I am still looking forward to turning off my alarm and a cocktail in my hand watching the kids play together.
*In case you are curious we do have a date for her heart Cath of June 17th* More on that on another date.

Monday, April 7, 2014

Now what?

Whats that now? I don't understand? How? Why? Come again? Can you please repeat that a little slower with some valium in my vodka. Yup, this is me on Tuesday of last week.
Sometimes dates are embedded into your brain. Dates that will never be erased from your memory. For me, my kids birthdays, my anniversary, your best friends birthday from Junior High and High school (Nov. 22, Happy Birthday Lisa!), The date your daughter crashed, and the doctors told you to say goodbye to her (September 14, 2007), The date the specialist for cardiomyopathy called and shattered my world...again. April 1st. The day that many people play funny, cruel, or insensitive jokes on other people was the day that the Cardiomyopathy Dr. Jeffery Towbin called my phone as I am walking into the state office to try and get better insurance (or at least help with our current insurance) and told me that he was "greatly concerned" for my daughters heart.  You see, a few months ago upon the request of our awesome cardiologist we started giving information to Dr. Towbin, to get a second opinion on Tara's heart. Why it was getting worse after being stable for so long? Are we on the right tract for medications? What else can we do? I knew the conversation had the potential to be hard, but honestly I never expected it to be. Kind of like that first cardiologist appointment that I ever went to on my own after Tara was finally discharged from the hospital after 3 months. I got dressed up, put on make up, ironed up my nicest pair of jeans I owned (who ever irons jeans?), even did my hair. I went into that appointment expecting to hear the words Cardiomyopathy? No that resolved itself some time ago, her heart is completely healed. What I got instead was a crash course on dilated cardiomyopathy and the cruel statistics and what my world would have in store for me with it. Well that and the knowledge that when you ugly cry, snot will remove water proof mascara. This is kind of how I felt on April 1st. When Dr. Towbin starts explaining the workings of Tara's heart, and how her heart is "unique" to other children with Dilated Cardiomyopathy and her snapping motion her heart does when it relaxes instead of a fluid movement. That her left atrium despite not having extra fluid volume had an increase in pressure in that chamber, and that there was a stiffness in her left ventricle causing the fluid build up and the dilation of her left atrium.  (yup more medical mumbo jumbo that I wrote down on chicken scratch paper then immediately called our local cardiologist to get a run down on what that meant in the real life world).  What this means is she has Restrictive Cardiomyopathy as well as the Dilated Cardiomyopathy, and from his findings he does not think the one caused the other....basically dumb luck...again. The link I provided is from the american heart association on a little run down about Restrictive Cardiomyopathy, but basically it is a stiffening in the lower chambers of the heart (ventricles). The hearts rigid walls fail to relax and expand "restricting" the ability of the heart to fill with blood. While the heart is pumping it is unable to supply enough blood to the body (causing syncope episodes *passing out*, drops of blood pressure, low heart rates, all things Tara has been experiencing recently). This puts pressure on the upper chambers of the heart (atria) and they become enlarged. In advanced stages of the disease the heart may not pump blood effectively and blood may back up into the liver and lungs as a result of congestive heart failure (Tara is currently in congestive heart failure). What this means to us? Well the short story is we need to figure out what caused her RCM (restrictive cardiomyopathy), and make sure the other kids are not at risk (they will all be screened).  They will be doing an MRI with contrast soon (the order has been put in at Rady Childrens, but we do not have a date yet on when) to find out a little bit more about her heart (this has the potential to be a risky procedure for Tara so please keep her in prayer), there is also talk of her getting an AICD (internal cardiac defibrillator) put in place because of the much increased risk of sudden cardiac arrest.  I will (try) and update this sight when I know more, but for the most part, please just pray.  I feel like yet again we are walking uncharted territory, and again my daughter is baffling doctors.
Again, prayers are much appreciated. Especially in the next month or so when we will be finding out more information on this disease, and how it is going to effect our family.

Tuesday, February 4, 2014

Dear Mom;

Today I saw you, so young, so in love. How are you even old enough to have a baby? I see your husband (or is he your boyfriend?) wearing a High School Water Polo sweatshirt, instantly my eyes are on you, and I over hear your conversation. You find out today about your sons heart condition. I want to run up to you, and hug you and tell you that it will be okay. It might not. I want to tell you that you will live to tell about it. You might not feel like it.  I want to tell you that you might be sitting here in the cardiologist office like us in 6 years wanting to hug another mom. You might not. I want to tell you that your son will be okay. He might not.  Life sometimes gives you crazy twists and turns. Hold on, and try and enjoy the ride. I want to tell you that you will find your way.  You might not. I want to tell you no matter what your faith is like now, you will pray like a Pentecostal grandma.  I want to tell you about the amazing support systems out there. I want to tell you that you are not alone.  That 1 in 100 babies are born with a heart defect. I do not want to tell you that 4,000 of them will not make it to their first birthday. Maybe your son will. I want to tell you that heart defects are the # 1 birth defect in the world. I don't want to tell you its also the # 1 Killer of all children. More then all the childhood cancers combined, yet when you tell your friends and family about your sons defect they will be shocked because they just think "It doesn't happen". I am here to tell you, it does.  Some days you will feel like you can not go on. You can. Some days you will feel like you are getting a crash course on your MD. You are.
Dear Mom, One day you will over hear another mom getting the news no mother should have to hear, that her child too will be born with a heart defect. You will want to hug them like I did to you.  You will want to tell them that it will be okay. It might not. Hug them anyways.