One year ago, I wrote "Letting Go" Series Introduction. In my post, I wrote, "It is essential for us– not just parents of children with health problems, but all people– to learn to accept where we are today and live thankful for each moment. During this 'Letting Go' blog series, I will be exploring these feelings in depth and giving practical tips for letting go and supporting those going through the process. I would love to hear from you if you have experienced something similar."
I am writing this post because I want to help other parents who are in this journey with CHD. This post focuses on what happens when you get home. When you have escaped the hospital, when all of your prayers are seemingly answered and your baby begins to thrive, what happens when youstart to decline? Today I am writing about letting go of defeat and remembering who you are.
I think sometimes we can be moving forward in our lives day by day without realizing how far we have fallen and how broken we are. We all live under the illusion that we have some small bit of control over what happens to us. When the truth of human fragility is revealed to us all over again, it can bring us to our knees.
This happened to me when I visited my dad in the hospital after his hip replacement. To put this in perspective, my dad was completely fine and walking normally a week after surgery, so none of this was serious. But when I walked into his hospital room, all kinds of jumbled memories and feelings rushed back at me. Even though it wasn't the same hospital in which Daniel received care, it was still a hospital room. There was a bed, a monitor, the same kind of remote to call the nurse, the same kind of "couch" by the bed. My dad had a nurse who didn't speak very clear English, which is a problem because my dad is really deaf, so I immediately went into advocate mode, and afterwards I felt the "fight or flight" reflex. I felt a clawing tightness in my chest and the urge to get out of there as soon as possible. Seeing my dad vulnerable in the hospital and feeling the need to be his voice brought all of Daniel's struggle back to me, and I had a panic attack.
I thought I was doing so well, but all of a sudden it was very clear that I wasn't. One little moment visiting my dad in the hospital after voluntary surgery revealed how messed up I still was from everything Daniel went through last year.
While Daniel was in the hospital in Houston, in my mind I made HOME a paradise, a haven of healing and comfort where Daniel could really thrive. Through all of Daniel's hospitalizations, procedures, and surgeries, HOME retained its heaven-on-earth qualities in my mind. Houston became the enemy--intense heat and humidity, cars, smog, high-rise buildings, and a hospital that began to feel like a giant monster trying to keep us inside. I wanted to be out of the city and back home in the country.
We did get to go home, but as Daniel started to thrive, I started to seriously struggle. I still feel a sense of survivor's remorse because so many babies don't ever get to come home. So many moms stand vigil hoping and praying for a miracle, and then experience the devastating loss of their after weeks and months of torture. How dare I struggle at home when I know so many who would give anything to be here?
For 6 months after Daniel was released, my singular motivation in life was keeping Daniel OUT of the hospital. So often we think everything will be perfect when we get home, but the truth is we are still fighting every moment of every day. Keeping a medically fragile heart warrior healthy is a full time job, and it took everything I had to keep track of his medicine and feeding schedule. In 8 months he went from being a fragile 9-pound baby who couldn't even hold his head up and required oxygen to a robust 22-pound toddler who is chasing his brother around our house. While Daniel was making all these leaps and bounds, while David and Hannah were healing from the emotional upheaval, I was barely making it.
I had been taking Zoloft since November 2018 to help me deal with all the anxiety and stress while Daniel was in the hospital, but over the course of 6 months it caused me to gain 30 pounds. I had crippling insomnia, I wasn't exercising, and I went days without brushing my hair or putting on makeup. People would tell me, "You need to make time for yourself. You can't take care of Daniel if you have an empty tank." I would nod and agree, but in my mind I was thinking, "When do you propose I do this? Daniel is on meds and feeds with his g-tube that only I can administer and manage."
When I did go places to be around people, I felt so out-of-touch with everyone around me. People would talk about their stresses in life, and I couldn't relate. All matters that aren't life-and-death seemed silly and frivolous. I began to feel like I didn't want to leave the house because every time I did, it was a reminder of how lonely I was.
I started to feel like it was selfish for me to worry about myself. When I did have a spare moment, I would wash dishes or do laundry or order groceries. I can deal with no sleep, no energy. I can deal with not leaving the house for days at a time. All for Daniel, David, and Hannah. They are the only ones who matter.
I felt like I was on a slippery slope sliding toward diabetes and heart disease. I felt powerless to fight back, and I felt utterly defeated each time I tried and failed. Maybe this is my life now, I caught myself thinking.
Then one day I noticed Daniel looked a little bluer than normal. He was cruising around the house, walking from coffee table to chair to toy, but his lips were blue, and his skin was mottled. I got scared. What if his pulmonary artery is closing? What if he has formed collaterals and he needs to have a Cath procedure in Houston? What if we...*gulp*..have to go back to the bad place? And then finally the big question...
How can I stay strong for Daniel and possibly face another hospital stay when I am in such bad physical and emotional condition?
While I was taking care of my babies, I had forgotten to take care of myself. Not only was I physically and emotionally depleted, but I didn't recognize the person I had become. I felt like a robot who administered meds and feeds. I was more of a nurse than a mommy. I was constantly assessing Daniel's breathing rate, color, and energy level instead of enjoying my baby.
I am huge believer that babies do best in the hospital when they have a strong and engaged parental advocate with them. When I realized that I was not equipped to fight a long and arduous inpatient journey with Daniel because of my failing health, I knew I needed to change.
Heart moms and dads-- it is okay to take care of yourself. We all know that our babies' health can change on a dime. One moment they seem normal and thriving, and another moment they are in heart failure unexpectedly. We can't stress out about that. We've fought so hard with our heart warriors so that they can live this life, not be wracked by fear in it. Yet we must always be ready for the next battle.
In the midst of fighting CHD, find a way to remember who you are. What do you enjoy doing? What are your ambitions and motivations? Who were you before you were a spouse or a parent? Find that person again.
With the help of my family and my doctor, I started to fight back against my declining health. I joined Weight Watchers online, and I've lost 5 pounds in the last month. My doctor is doing a weight loss clinic, so I see her once a month for a personalized plan grounded in healthy habits. I started to feel more in control and empowered with little victories.
I started teaching again this fall with the support of my parents (Daniel is very stable and won't need another surgery for at least 2 years. The blue scare referred to above is apparently normal in single ventricle babies as they begin to move around. I know I can give 100% to my students while still being present at home). When I am lesson planning, grading papers, and teaching teenagers about literature and writing, I feel like myself. The first day of school, I had this moment of feeling completely at home and normal. This is who I am, and this is where I belong. After the tumultous past year, the moment where I started to recognize myself again felt incredible.
I joined CrossFit a couple of weeks ago, and I feel strong. Just a note about myself-- I am an athlete. I swam competitively for 12 years from the time I was 6 years old until I was 18. I swam at least 30,000 yards a week in the pool for about 5 of those years. I joined Camp Gladiator about 4 years ago, but I had to quit through all of the stuff with Daniel, so when I started CrossFit, it had been at least a year since I had worked out, and at least 15 years since I had done any kind of serious weightlifting.
During my first workout, I felt like my body was saying to me, "Hey! There you are! We started to worry about you!" I felt my muscles wake up and activate. It felt so good to make positive steps toward change. Apart from any personal motivation, it feels like working out is something I ought to do in honor of Daniel. He might not ever be able to weight lift, and he might be more physically limited than those of us born completely healthy. Somehow if feels right to push myself to my limits when Daniel doesn't have that same luxury.
Here is what I want to stress-- I am only doing so well because of the incredible support around me. My loving husband works very hard 10+ hours a day providing for our needs. Because of his hard work, we have good health insurance and we don't have to worry financially. My retired dad and my mom with a flexible work schedule live on one side of me and my supportive aunt and uncle live on the other side. All of them help me take care of David, Hannah, and Daniel.
Even more than my incredible family, I know my savior. This is the most precious and powerful gift of all.
I have been powerless and weak, so I know what Paul meant when he wrote, "we rely on what Christ Jesus has done for us. We put no confidence in human effort”(Phil. 3:3). Randy Alcorn wrote, "It is often through loss--and the first of stress--that we discover God alone is the unfailing source of contentment." What a joy it is to know first hand that God is "able, through His mighty power at work within us, to accomplish infinitely more than we might ask or think” (Eph. 3:20).
I have struggled, and I have had incredible resources at my disposal. What about those who don't have any support from husband and family? What about those who don't know Jesus? Often heart moms are battling completely alone. There are few resources to support these families who are struggling with exhaustion, isolation, and loneliness, people who have chosen life for their babies but who feel abandoned by the world.
What can we do to help these people? How can we help bear their burdens and bring them the life-saving message of the Gospel? That, friends, is the question I am trying to answer with Daniel's Lion Heart Foundation.
Dear families impacted by CHD, I see you, and "I fall to my knees and pray to the Father, the Creator of everything in heaven and on earth. I pray that from his glorious, unlimited resources he will empower you with inner strength through his Spirit. Then Christ will make his home in your hearts as you trust in Him. Your roots will grow down into God’s love and keep you strong.” (Eph. 3:16-17)
*I debated on whether to post this since I am teaching this year. It feels a little weird to be so open when parents of my students, students themselves, and colleagues may read it. I haven't posted much recently because I've been unsure what and how much to share. I decided to post it because I think it is important to shed light on what many people are going through so that we can unite as the body of Christ to help. "But how can they call on him to save them unless they believe in him? And how can they believe in him if they have never heard about him? And how can they hear about him unless someone tells them?" (Rom. 10:14, NLT)
**In November I'm planning on sending care packages to heart moms who are at home with their babies. If you are interested in helping, please:
- Visit https://www.danielslionheart.com
- email me at firstname.lastname@example.org
- Want to donate money? There are a couple of options-- via Venmo, PayPal (email@example.com), cash or check.
- Can you make items that you would like to include in the care packages? These are hugely appreciated. One of the pictures below shows hand-made snap-in-front onesies that Brian's aunt made for the care packages. Email me if you're interested in donating!