For a moment I was weightless. Suspended in the beautiful, clear, turquoise water of the Caribbean, I felt free. The water of the Caribbean is very salty, which allows people to float in it with very little effort. So here I lay, ensconced in the sea without a care in the world. Daniel was safe with my very capable mother-in-law, and David and Hannah were having a blast at VBS with their cousins. I didn’t have to worry about feeds and meds and oxygen saturations and cyanotic episodes. This trip was the first time I had been away from Daniel, and I hadn’t realized how much stress I carried with me until this very second.
During each of the 110 days Daniel was in the hospital, I dreamed of home. Watching Daniel struggle day after day was torture. Surely going home would be the answer to everything, an answer to all of our prayers.
We have been home for 6 months, and it has been wonderful for the most part. Daniel is thriving. He is 11 months old, and he is doing all the normal things an 11-month-old does. He babbles, claps, shakes his head “no,” sits up, scoots, almost crawls, pulls up on everything, and walks when I hold his hands. He loves his brother and sister and just wants to be included. He is even eating baby food and drinking out of his honey bear cup! He has reached so many milestones, and we are so thankful. Every single day with each of our children is a gift.
If Daniel is doing so well, then why am I not?
I have been really struggling with anxiety and depression. I am tired all the time, and I feel listless and hopeless. I was on Zoloft, but I gained 30 pounds in 6 months while on it. Now I feel physically bad because of my weight gain, and I feel like a failure for allowing myself to get so heavy again.
With the anxiety and depression comes self-defeating thoughts. I feel like an incompetent mother because I need so much help from my family. I take personally innocent comments people say to me because of my insecurities. I am a mess.
I made a survey recently and asked other heart moms to participate. So far, 49 people have participated. Of the 49, half the respondents said the main struggle they have faced since being home is personal mental health. According to the survey, only 14 of the 49 have received the help they need. It is too difficult to find a doctor as I can personally attest. It is over a 2 month waiting list to see a psychiatrist at Baylor Scott & White. Even if you can find a doctor, it is impossible to find time to go see one for counseling. We are parents of medically fragile children! It isn’t like you can just hire a babysitter once a week.
What’s worse is that even if you can find a doctor and can find time for counseling, no one understands. Every time I share Daniel’s story with someone, I feel more and more isolated. People say things to me like, “Well, maybe he will grow out of it!” and “Aren’t you happy now that he is all fixed up?” I don’t even try to explain that Daniel CAN’T “grow out of it.” He can’t magically grow a left ventricle. The surgeries Daniel has had are “palliative” which means he can’t be “FIXED.” CHD is for LIFE.
But I can’t explain that. People don’t want to hear it. Even if they do want to hear it, they can’t fathom what it means for families impacted by CHD. So I stay quiet. I stay at home. I don’t try to explain. I withdraw from friends and family and community.
In my survey, I asked, “What kind of gift would be most meaningful to you?” 75% of survey-takers said “an event where I could meet other heart moms” or “a care package to remind me that I am not alone.”
As many of you know, I had a fundraiser in April of this year to raise money for care packages for parents of heart warriors who are currently in the hospital. I was able to raise $4,000! The items in the care package were intended to be beautiful, comfortable, and spiritually enriching. Items included are comfy socks, hand lotion, a coffee mug with scripture, individual coffee creamers, hand made tie-in-front onesies, a notebook with an anatomical heart on it, the book The Heart of a Mother, a $20 gift card, and prayer cards. I will be delivering the 50 care packages on July 10, 2019, to Children’s Memorial Hermann Hospital in Houston.
Now that I know how challenging life at home is, I want to do another fundraiser later this year for families of heart warriors at home. If you are interested in supporting this effort, please email me at Staci.email@example.com.
I am establishing a nonprofit called Daniel’s Lion Heart Foundation. I am raising money at the moment so that I can file my 501c3 paperwork. It costs over $800 to file that paperwork, but it is a very important step because it shows people that it is a legitimate organization. Once I file for 501c3 status, all donations are tax deductible. I will be able to back date so that all donations made since April 2019 will be tax deductible.
Why am I establishing a nonprofit? Aren’t there a million other nonprofits with the same aim? Why don’t you just join another one?
Here’s why– the main aim of Daniel’s Lion Heart is to provide spiritual support to families in need. When I was in the hospital with Daniel, I prayed with so many people. Never before have I seen so many hurting people crying out for God. I was happy to share the message of the Gospel with them, to pray with them, to tell them that they have already won the ultimate victory through Christ, no matter what happens.
But– I want to share the Gospel in a way that allows people to feel empowered to connect with God through prayer on their own. In Romans 10:14, Saint Paul writes, “How then will they call on him in whom they have not believed? And how are they to believe in him of whom they have never heard?”
The Holy Spirit moves, and the power of God’s Word is real. It can be hard enough for a life-long Christian to understand God’s word sometimes. How are people who have never read the Bible or been to church supposed to have an intimate relationship with God rooted in study of God’s word and prayer?
While I was in the hospital with Daniel, I read the book Prayer by Timothy Keller. In his book, Keller writes “the aim of prophetic prayer is…nearness to God—the nearness of child to parent or friend to friend.” He explains that prayer “through the Word and Spirit” is “a full conversation” with God. He writes that “the way to have God dynamically active in our lives is through the Bible…the Bible is the way to actually hear God speaking and also to meet God himself” and that “our prayers should arise out of immersion in the Scriptures.” My mission now is to empower other parents of medically complex children to experience prayer that both pours their heart out to God while rooted in God’s Word.
If you had the cure for cancer, would you keep it to yourself? Of course not! That’s why I can’t keep silent about God’s grace and mercy. I have to share with other people, especially these other hurting families. Not only do I know God is real because I have been taught; I know God is real because I have seen Him move in clear, tangible ways. I can’t promise that God will heal their child, but I can share about the infinite majesty and grace and wisdom and love of God. I can share the Word with them so that the Holy Spirit shows them how God is carrying them through this most difficult time.
Even though I trust and love God and despite the fact that I pray and study and worship with my church family, I still suffer depression. Being a believer doesn’t mean my life is perfect. My family members and I are still sinners affected by the fallen nature of the world. My brain is still affected by chemical imbalances, and my mind is still plagued by PTSD and fears and stress. Even when I feel like I can’t go on any more, I still know “how wide and long and high and deep is the love of Christ” (Ephesians 3:14). What incredible joy!
“Now to him who is able to do immeasurably more than all we ask or imagine, according to his power that is at work within us, to him be glory in the church and in Christ Jesus throughout all generations, for ever and ever! Amen.” (Ephesians 3:21).