Larkin had another Echo of her heart this week. It was unexpected because she was released from her Cardiologist at 11 months when that Echo showed the two ASD’s in her heart were getting smaller. The appointment was made and written on the calendar but I couldn’t bring myself to look at it. My friend Laura said it perfectly ~ a year ago I wouldn’t have batted an eye at this, as it would have just been one more thing. Larkin has enjoyed 1.5 years of good health and I must admit I relaxed. That is why this had me feeling more than a little “undone” for the past few weeks, so much so that I have been on a self-imposed “time out” because I find myself beginning to unravel on people who otherwise are just blips in a day.
The word “heart” is mentioned more then 750 times in the bible. Different contexts but when you think of the heart it invokes a lot of words that are inspired emotions. Our hearts can be full, empty, broken, ache, bursting, in our throats, or as Jeremiah says “the heart can be deceitful above all things and beyond cure”. We think of following God, with all our heart as is His request along with the heart being our life force pumping the blood to and from.
How many times have you been able to actually see your child’s heart? I’ve seen Larkin’s up close and personal 3 different times now and each of those moments brought me to my knees with anxiety, and unexpectedly, humility. Watching the chambers and valves working furiously in and out, the blood flow highlighted on the screen, and every so often the tech adds the sound ….. it’s humbling to watch something so amazing.
On a scale of physically challenging tests it ranks right up there, as #1 and I don’t mean for Larkin. We were in the waiting room for about 20 minutes and I spent that time chasing Larkin from one end to the other as she tried to knock every single item off the counter, bolt through an open door, and knock over the little chairs. She was out of her element, tired and I was beyond anxious with my magnified feelings of “undone”.
My next challenge is to hold her down on the table while the tech performs the echo. Now there is a work out and a good time for everyone. Larkin weighs 44 pounds, is over 3 ft tall, and has the flexibility of a greased fish. She got a few good kicks at the tech but I was able to pin both her arms and wrap my leg around both of hers. Her cries at being held down were deafening but I sang songs to her and she calmed down for most of the test.
The room was quiet except for my hushed awful renditions of “if you’re happy and you know it” (yea no irony there) and “10 in the bed”. Both Larkin and I were watching the tv screen as the wand rolled over her heart. Obviously she had no idea what was going on but I shriveled up inside at the sight of her heart. I can’t find another adjective for how drawn up I felt in my own heart and soul. There was her beautiful, amazing, powerful, slightly imperfect, little heart. Chugging along like the Little Engine that could with valves blowing open and closing with each whoosh of blood and a clear picture of the entire muscle.
I knew the tech wouldn’t answer any questions so I concentrated on singing and keeping Larkin pinned down but my eyes went from the screen to the techs face watching for any sign of “OMG RUSH THIS CHILD INTO SURGERY” but of course Deb the tech stayed true to her profession, smiling and telling me about her grandchildren.
An echo for us doesn’t take that long and we were back in the waiting room in about 20 minutes and we settled in for another running of the bull. A few minutes had gone by and the nurse came to the door and called us back again telling me that the doctor wanted more pictures. Of course I started to panic internally as we walked back into the sono room AGAIN and Deb said he just wanted a few more pictures of one area so we assumed the WWF pin position again and started the process all over again.
Good times. Neat. Wish you were here.
After this scan they had us wait in an exam room. The pediatric specialty area is pretty awesome because the nurses know us and it’s not like regular pediatric areas. It’s quieter (except for us) and as a parent it feels more sacred if you will. We aren’t surrounded by blue-sky parents but others who see the beauty of purple and breathe our same air. The door was open and I could hear her doctor down the hall.
Larkin’s Cardiologist is an outstanding doctor. I have always thought highly of him and his unbelievable dedication to Pediatric Cardiology for over 40 years. He travels from Peoria to Champaign to see our kids, and will read echos, EKG’s over the computer if he isn’t here, and consults via email. I trust him ~ enough said.
I could hear him in another office talking to a student who was following him that day. He was speaking about Larkin in clinical speak, helping the student understand exactly what she could expect from this same situation should she encounter it. As her advocate and caregiver I will write this way to doctors, school admins, and others when necessary. As her mother …. I melted. I often feel as if I am made of steel after all we have been through but even steel has its melting point. My little girl was being reduced with every. single. word. “5 year old, down syndrome child, history of ASD’s, this is common among Down’s kids, they are also more susceptible to heart disease,…..” I tried to close my ears at this point but I couldn’t.
I fight every single day to show this oh so imperfect world my daughter’s perfect value and every word felt like a hammer to my own heart. My heart was aching with a physical pain and an Echo probably would have shown a break. I know very well that it was my angst over the situation, the physical exhaustion of the Survivor like task of getting Larkin there, through it, and home again, and seeing her heart on that screen spilled over so many emotions. I also know that doctors MUST separate themselves and speak this way or they wouldn’t get anything done and students would never learn.
As her mother? I melted. I wanted to throw up and I could feel my heart in my throat. He didn’t know I could hear him and I have perfected the outward appearance of calm so when he came in to speak with me, I made nervous small talk until he took charge and put all my fears to rest. Larkin’s heart has one small hole but we are not worried about it and we do not have to come back and see him ever again. I melted a little bit more but smiled and thanked him and we exchanged more small talk as his daughter just had twin girls. Her name is Erin (I have one of those) and she is following in her dad’s footsteps and is a Pediatric Cardiologist. Home we went.
The drive home gave me time to bring my shoulders down, take some deep cleansing breaths, and cool off. My body still aches today because I have walked around like a coiled spring for the past few weeks and frankly I would like to go 365 day without a major test but overall I am finding my center of gravity again. I am gathering the emotions, fears, angst, and putting it all back into it’s box.
That is the beauty of steel. It can melt but eventually cools off and finds the ability to once again be strong and that is the epitome of parents of children with special needs.
LUKE 12:34 For where your treasure is, there your heart will be also. She for sure is my treasure and she owns my heart. Happy Friday everyone
I can relate. On so many levels. Glad to hear the final report was a good one, but sorry you had to feel such angst before and during the tests. Happy the box is closed. xoxo, Lisa
Amy, you had me at, “I fight every single day to show this oh so imperfect world my daughters perfect value.”
Larkins value cannot be measured as she is fearfully and wonderfully made.
I am so thankful to hear the tests went well.
Beautiful words about a beautiful little girl and her mama.
You always find the most apt metaphors. So wonderful to hear that Larkin’s heart is perfect enough to ignore from now on! 🙂