Custom made hearts are more common than you think.

img_2883When I explain to anyone Eva’s medical issues, as soon as I mention heart surgery, the expression on their face seems to get more despondent .  There is so much of  a respect and fear for the heart that people tend to understand immediately how serious your child’s condition is if you mention they have a heart issue.  With that being said, I don’t think people know how common it is for children to be diagnosed with a heart condition.  For example I have 2 childhood friends that both have children who also had complicated heart surgeries (one just a few days ago) at a young age. Because of the complex properties of the heart, all three of our children have had different interventions and thank God all three of them are doing well.

As I was driving today to visit one of those friends (mentioned previously) at the hospital so I could finally meet their little one after he just had open heart surgery, I almost turned around a few times because my anxiety of it all almost took control of me.  The emotions I felt were taking me back to when Eva was having heart surgery herself and my sadness overcame me.  It was overwhelming, but I followed through and I am so glad I did.  It was nice to see how incredible her son was doing and to put a face with the many, many, many prayers I sent up for him.  I was also reminded how much I want to go to nursing school.  I don’t think I ever felt so passionately about a career choice than this.

Watching my friend, a new mom, experience something that most parents will never have to deal with, (i.e. the extended hospital stay, cords tangling, monitors beeping, Doctors and nurses being obnoxiously loud in the room where your baby is trying to nap through the pain, X-rays, echos, sutures from a fresh open wound) makes me realize how truly hand picked we are for these very difficult times.  We have to hand over our child to a surgeon to cut them open and repair a heart you grew yourself, you have to let nurses watch over your child and hope they don’t miss any red flags and we have to trust God that his plan is one that shows mercy to your child.  After an experience like that you learn to appreciate your boring, repetitive life at home, as ridiculous as it sounds.

As I left the hospital I went into an elevator with a kid (maybe in his 20’s) that had a artificial heart in a backpack.  Want to talk about putting things into perspective.  I wanted so badly to talk to him because I am 100% sure most people are intimidated by his situation but all I got out of my mouth was, “have a good day”.  I was so disappointed in myself because I wanted to tell him how amazing and special he is because he lives in an time where his unusual circumstances allows him to walk, talk and live!  All I can think is God has such a purpose for him and all of our children.  Especially our children that require medical attention who also live in a time where these medical advances have allowed them to live a longer life, and they wouldn’t necessarily have had that option, just 50 years ago.

I am so grateful for Eva and her experiences, because while she went through them physically, I went through the same experiences but on an emotional level and I wouldn’t trade that for the world.  I have become stronger, more aggressive (especially in situations where I need to be for my children) and at the same time softer.  I have adapted to situations where some people think is impossible to overcome.  You never know what you can survive from until after the dust settles.

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Sometimes it is OK to cry… in the shower.

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I knew I needed a photo of today of just us, my love.

As I took a shower tonight I had to remind myself that it was ok to cry before I actually did.  I should start by saying it was a long day, and if you want to include from the start of my concern for Eidan, then we can say its been a long month.

To begin, by niece has type 1 diabetes so it has been in my life for 17 years now, so when Eidan started peeing more than usual at night in bed, I started to worry.  He has been waking up in the morning with the front of his shirt, his pants, and his bed soaked with pee.  His tantrums  also seem to come to a complete stop when I give him something to drink, telling me that he is more thirsty than normal so I made an appointment with the doctor a few weeks ago, but then I cancelled it because I thought I may have been reading into it too much.

More recently, my mom and my husband got to see and feel what I was talking about and they concluded that yes, it was a considerable amount.  So today was the actual doctors appointment and as soon as we got into the room he was fighting everyone for the first hour of vitals (including the blood work and placement of the pee bag).  The second hour he would only sit in my lap and watch videos on my phone, while we waited for him to pee in the bag.  The third hour was us walking around in the green grass trying to initiate the pee that we had been waiting for, for three hours already until it finally came.  The whole morning I was nauseous at the thought anything being wrong with my son, and by the end of the appointment, I was hungry and I had to get home to feed Eva through her g-tube, and make something for Eidan.

When we got home I got some confusing results from the nurse… first, his blood sugars from his urine was a bit high, but after I mentioned that he had just ate right before he peed in the bag, so that number was ok, then I got another call telling me that he needed to see a endocrine specialist, on top of the urology doctor because they were just a little concerned with another number (I can’t recall the name because I was in a daze because I though he was just cleared).

I can’t exactly express how I feel because I don’t know how to feel, other than I was prepared for Eva’s issues but I can’t say I am prepared for this… I don’t even know if this is a “this” yet.  But I can tell you that after my shower and my long cry I felt absolutely chosen for these two children.  Despite any more bumps in the road that we may have, no matter how many more shower cries I have from now on (whether this situation is a problem or not), I don’t care how “hard” my life may be, I can say one thing for sure… I can’t do shit without God, period.