The Truth About Miracles

Tonight, I learned that another child lost their fight with Congenital Heart Disease. I checked my phone after meeting with friends and saw the terrible news spread across Facebook. Someone asked me what was wrong and without taking my eyes off the screen I whispered that someone just lost her son to this horrible disease. 

This is hard. I thought other things in my life were hard but no- the reality that our children are with us for the grace of God is overwhelming. We are so fortunate. I don’t think people realize how fortunate we really are to have Isabelle do as well as she is doing. It is more than a gift. It’s more than a blessing. The only word I can say is miracle. 

Ryker’s family set up page on Facebook called Miracle Ryker. He personified the word ‘miracle’ and lived when many medical professionals didn’t think he would. In spite of the complex defects he had he smiled, knew joy, loved his family and knew love in a way most people never see. His parents flew him across the country to receive the best care. They never left his side. His siblings came to be with him. I remember seeing pictures of the whole family in his room on 8 South. You could feel their love for him just by viewing the picture. Amazing. 

If nothing else, CHDs have taught me to never take anything for granted. To breathe in every moment as if it wasn’t going to last. I have learned that I have an empathy for people I have never met. I never had the pleasure of meeting Ryker’s parents. I saw them when we were there many times but as most hospital parents are, we were lost in our own thoughts. During one of our inpatient stays I knew they were in the ICU and asked if she was up for a visit but the mom had no idea who I was so I passed along a message instead. 

I am meeting some heart moms tomorrow for the first time but I feel like I have known them for years. We have gone through pregnancies together, surgeries, recoveries and complications together. When one of us is inpatient, the other checks in. I have no idea what this woman looks like, but I know she knows what it is like to stand over the crib and hold the breath while waiting to see if the chest is rising. She knows what it feels like to try to fit onto the stupid cot and only have one pillow. Or be aggravated that the CNA wants to take vitals NOW just as she went to sleep. And I know she totally gets the insanity of pumping breastmilk. We shared many of these fun heart mom events with good humor and tears. I am looking forward to meeting her and another BCH mom whom I have also been following. 

If nothing else, Isabelle’s heart condition has taught me that there are silver linings in this crappy CHD world we were thrown into. Isn’t it a gift that I can have such empathy for a woman I have never met? The ability to connect with another human being on such a deep level is a blessing. Living in a hospital setting, hoping that you will be able to leave with your child in one piece, is really hard. It is even harder when you see another mom be denied that chance. It does make you hold your babies tighter, a little longer, and never let them go. Image

A Monday in April

I have always wanted to run the Boston Marathon. Ever since I first crossed the threshold from awkward pain to wonder at what my body could do. Lacing up, putting on my tattered visor, adjusting the bra and heading out to a familiar route was a part of my routine during some very difficult times. The marathon was an obvious metaphor representing life’s hills and stretches of flat road when you just cruise for a little while. I admired runners who made the 26.2 mile trek, and secretly coveted their marathon gear with envy. It represented an achievement of great physical and mental stamina. Something that has eluded me my entire life, having ADD and a host of other issues. I wanted to finish something that was worthwhile, something that I could feel physically, emotionally and spiritually. I came very close when I ran the BAA Half Marathon in 2008 and I wanted more. Of course, I became my own worst enemy and allowed distraction to lead me away from this goal. Every time I saw a BAA marathon jacket, shirt or 26.2 sticker the longing for that goal would appear mixed with regret. I will do this someday, I think to myself. I have to. 

I started a different type of marathon beginning March 5, 2012 when Chris and I found out the baby we were expecting had one of the most severe heart defects a person could have. In order to survive, the baby would need to go through a total of three open heart surgeries, the first one taking place in the first week of life. We went up and down many hills, learning more about the condition and what we could expect from the treatment. Many times I wanted to leave the race and just catch my breath. There have been very few rest stops on this route but we have enjoyed moments of joy that replenish our spirits. 

Isabelle runs her own marathon. Her heart after the first surgery pumped twice as hard as a normal healthy newborn one. She burned calories just by breathing. We couldn’t keep up with her caloric demand and very little intake. We didn’t have any trainers helping us strategize through difficult miles. We just had to do anything to get her to drink more and burn less. Eventually we had to give in and get an NG tube. She began to grow after that and once again we would achieve some stability. At least until she yanked the tube out every few weeks. 

Today Isabelle ate a ridiculous amount of food and drank every bottle we gave to her. A far cry from me, crying and holding her, begging her to please drink an ounce. Blaming myself when she would lose weight. Worrying that she wouldn’t gain enough to make it to the next level. Like any road race, you have to get through the miles in order to finish. You can’t cut through on a short cut unless you are Rosie Ruiz. We had to make it to the next level. Our finish line is her survival. 

Or maybe she will make her own finish line. Up until recently, I thought running would be out of the question for her. Her heart wouldn’t be able to handle the stress of supporting circulation under that kind of stress. On March 17, 2013, a 21 year old young lady with hypo plastic left heart syndrome ran a 15K. Ran it. Trained for it and successfully ran it. I can’t express the joy I felt as I watched a video of her crossing the finish line with her father. I could share something I enjoyed with all of my children. Someday, Isabelle may join me over a finish line. After being told that these children limit themselves and don’t have the stamina like heart healthy children, that video brought me to my knees in less than 15 seconds. 

I look forward to the day when I get to arrive in Hopkinton on a Monday morning in April. That would be an incredible, life changing accomplishment. Running across a finish line with my heart warrior with all my girls is another. 

Seeing the bombings that disrupted something I considered so sacred was a complete shock to my being. After hours of being glued to the television and watching the same footage over and over, seeing the same people falling and running, I had to do something. On Wednesday morning I laced up and ran for the first time in a week. I thought of each person, each victim with every breath. I thought about the people I had seen running with fear. The images of a bloodied sidewalk on Boylston. It was an emotional run for me, with another to follow on Friday when my husband and I joined over a hundred runners at the Plymouth waterfront to honor those who ran and those who couldn’t finish. It was a small gesture but I felt like I had done something to honor those I admire so highly and hope to become some Monday in April.

 

G is for….

Today is a big day for us. We have a GI appointment today at 4pm with the illustrious Dr. Lightdale. I can hardly wait to say “We haven’t tubed a feed in two weeks.” Two weeks. This morning Chris and I couldn’t remember the last time she had one of her morning vomit episodes. Could this mean the end of the tube as we know it?
The feeding tube has represented two sides of a coin for me. One side is failure- failure to thrive, failure to nurse, failure to be able to give her nourishment. On the flip side, there is success- success at getting her to the weight she needed to be for the Glenn, success in helping her grow and ironically, success at getting her to take the bottle after months of frustration.
Let’s just say I am looking forward to getting it removed. I have enough mixed emotions in my life right now.
I am still trying to make my way through the various emotions I have from losing a job I never planned on losing. There are moments when I wonder when the bitterness will go away, when I can reflect without feeling angry and betrayed. I am doing everything possible to focus on positive energies around me to help me stay out of the Pit of Self Pity. It’s nearly impossible to stay positive when you are trying to get your health insurance reactivated while the ones who behaved poorly have their jobs. Truly I thought I was wearing the white hat in this situation, but I digress.
Yoga has been a huge help in keeping me focused.
So far I have taken 6 yoga classes and have enjoyed the 60+ minutes of thinking about nothing other than the present. Poses tend to do that to me. They remove the distractions and allow me to focus on what my body needs to do in the NOW. It’s been a nice way to turn my brain off.
Of course, there are many things that do float through my mind when I am relaxing. I think of my girls, of what I need to do to get my portfolio and resume together, and how much I would love for my husband to join me in a class sometime. Then I come to my senses.
Running has helped too but I find myself back in the Pit after a mile or so.
Another way to keep out of the Pit is spending time with my girls. Isabelle is doing amazingly well with her physical therapy, and her feedings. Addie is showing signs that she is gifted, and will probably be reading soon. Liz is on her way to NYC to perform on the Intrepid with the Plymouth high School Band. Lots of great things that I am lucky to be home for.
This milestone that we have reached with Isabelle is a huge pick-me-up, and I am looking forward to hearing that the days of the G-tube are numbered.

Today marks the 9th day we have gone without using the feeding tube. She has her first real cold, so I wasn’t sure if we would be able to keep her off of it since her stuffed nose makes it hard for her to eat. She did eventually finish her morning bottle giving me hope that we can get rid of this thing! I had a great weekend with my girls and am looking forward to warmer weather so we can get out of the house.

Our next appointment is with the GI on thursday. Addie has her first dental appointment on Tuesday. Liz has an appointment on Wednesday. Let’s hope COBRA is all set so we don’t get any more phone calls telling us our insurance is inactive. When we first got MassHealth for Isabelle I felt guilty. Now I am so grateful we have it otherwise her appointments wouldn’t have been covered. Losing a job is hard enough without having to deal with the hassle of insurance but here I am, dealing with the hassles.

I am grateful I can be here for the girls and am being granted the time to gather myself together in preparation for the next step. Losing the benefits and trying to stay afloat while waiting for things to kick in is a PAIN in the ASS. In spite of this latest hurdle I am enjoying my alone time with Isabelle immensely. Another loving mother lost her son yesterday to congenital heart disease. It is a stark reminder to me about what my priorities should be. Yes, being jobless is a struggle but thank goodness I have my girls with me. Even though the insurance issue is a real headache, I can still hold my baby and watch her breathe while she is sleeping on my chest. 

Yesterday I spent the day with my oldest daughter at the NESBA Indoor Percussion competition. Liz and her team blew me away with their incredible performance. The judges didn’t seem to agree with me, giving them a score of last place. Stupid judges. I was thrilled to have been able to spend that time with Liz. Most of my time lately has been focused on the other two. Just another good thing to add to my gratitude list: spending time with my oldest and sharing something she loves. 

For all my complaints, bitching and moaning- I need to remember a few things. Isabelle is still with us. She is doing very well. Liz shared her love of winter percussion with me and only pretended she didn’t know me a few times. And Addie…is Addie. If that is all I can be grateful for at the moment, that is enough for me.

 

Heartbroken

I have been unemployed for seven days. It feels like an eternity. Yes, it is a great opportunity for me to spend at home with my girls. Yes, I am very happy that I can enjoy some time getting myself together for the next step in my career. No, I have no idea what that is. People mean well when they ask me these questions and I know they are genuinely concerned. It helps lessen the sting a bit when I hear people ask me how I am doing and encourage me to keep my head up.

Because this stings. A lot.

I am heartbroken over losing a job that meant so much to me. I am trying to focus on my beautiful girls and my husband who are trying to keep my spirits up. I know I need to keep looking at the fact that Isabelle is doing so well and our situation could be so much worse. But it still hurts that I back in this position of being at the mercy of headhunters and potential interviewers. The fact that our insurance has been deactivated makes things even more stressful and I feel responsible for these burdens. Trying to correct the situation is a full time job in itself, calling HR, trying to follow up with the benefits company…it adds to the pile.

Yesterday we had a great appointment at Children’s and have a new tentative date for her final (we hope) surgery. Fall of 2014 looks to be the final date. Hopefully I will be employed by then. Her heart function is great so there is no need to schedule an early Fontan. We also may be able to get rid of the feeding tube since we are on DAY 5 of NO TUBE FEEDINGS. We will get confirmation on that April 18 when we see Dr. Lightdale. I can’t wait to shock her with the news. We were told Isabelle may need the tube until she is two and now here she is drinking full 4 oz bottles and enjoying her apples.

There is much to be positive about. I know this. It doesn’t make me feel less hurt or devastated, unfortunately. I guess I will have to continue to move ahead, run a few miles, try some yoga classes and work on my portfolio. It could be so much worse, and I am grateful it wasn’t. Being let go doesn’t erase all of the accomplishments I have made over the past two years. It doesn’t erase my talent. It doesn’t erase the relationships I have made or the good memories I have. It just sets me back a few feet further than I want to be.