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Fear not…
Do not fear, for I am with you… – Isaiah 41:10
God is our refuge and strength, an ever-present help in trouble. – Psalm 46:1
For I know the plans I have for you… – Jeremiah 29:11
I know all these things and still I was afraid when we walked into Boston Children’s the day of surgery. Afraid to take a chance. Afraid that this day would be the last day. Afraid that I would never again wake up and see his sweet smile. Afraid that it wouldn’t go right. Afraid. Afraid. Afraid. I should not have been afraid. I know better than to be afraid. I know that He gives me a verse, about not fearing, for every day of the year. “Fear not for I am with you.” was playing over and over again in my head as we walked through those doors. I can claim God’s promises and still worry. It doesn’t not mean I don’t believe or have faith.
I have seen God show up so many times over the years that I should know better than to fear. Truly I should and in reality I do. I spent my day confessing my sin of worry over and over again. I turned it over to Him again and again. I believed these words when I said them, “Let your will be done.”
Can any one of you by worrying add a single hour to your life? – Matthew 6:27
My worry didn’t mean I wasn’t trusting his plan. My worry just meant that I know sometimes God’s plan and my plan aren’t the same. I want the happy endings, without pain and hardship. I want the beautiful stories where I can stand up and say, “Look what my God has done!”, but I have been there, smack dab in the middle of the hard. I have prayed and prayed and prayed. I have laid it all out there. I have begged and pleaded for just one more day. I’ve had faith that God would heal. I’ve believed it with my whole heart and yet my child died. The reality of picking out a little white casket is not something you soon forget.
It took me years to realize, that Kyle’s dying didn’t mean I didn’t have enough faith or that I hadn’t prayed hard enough or believed enough. It just meant my plans and God’s plans didn’t align. His will was different that my want. This is the reason it is sometimes hard for me to rejoice when others around me are hurting. Because sometimes the gates of heaven can be stormed and still the child won’t survive. Sometimes there is no happy ending. People like to say “God has big plans for this child.”, but what does that mean for the child that has died? Are you telling me God didn’t have big plans for this child too?
Dan said it best after Kyle died. He said in effect, that if you spend the rest of your life being bitter about what happened then Kyle’s life will have been in vain. Let his life change yours. Let his life make yours better. Let his life make a difference in this world and remember him with love.
When we had Hopey, I didn’t shout my praises. I thanked God. I celebrated in my heart but I didn’t share the wonders of His glory because I worried what others around me would say. Their child’s surgeries didn’t work. Some needed heart transplants. Some never went home. Some spent weeks and months waiting for their child to heal and it felt wrong for me to celebrate. Why should I have it so easy (relatively speaking) when others were hurting?
The truth of the matter is there will always be someone else who is jealous of what you have. The mother who can’t conceive is jealous of the mother who has a still birth. The mother who has a still born child is jealous of the mother whose child lives five days. The mother whose child lives five days is jealous of the mother whose child lives a year. The mother whose child has no options for surgery is jealous of the mother who has spent months in the hospital. The list goes on and on.
Years later, I realized I was wrong for not sharing Hopey’s story and decided from then on I would praise God in the good and the bad. I would not let the fears of what the world thought stop me from praising Him with all the glorious wonders He has done. I have watched miracle after miracle unfold and this time with Ben was no different. But I will tell you that even if it hadn’t gone so wonderfully, I would have praised God. I would have praised Him for letting me be Ben’s mom. I would have praised Him for every single day that I got to wake up and see Ben’s sweet smile. I would have praised him because I was that mom who wanted more than five days and this time I got so much more. Each and every day is a blessing. I have been blessed immeasurably by Ben’s life.
Ben is a sweet soul. Many people commented about him while we were in the hospital. Ben is strong and doesn’t cry very often. People comment about how brave he is. It is a good thing but at the same time it breaks your heart. He’s been through so much that he no longer cries with needle sticks. He smiles at people and he thanks them. While Ben was recovering in the CICU, he was asked to walk. Every lap around the big unit, Ben was allowed to pick out a small toy from the toy box at the end of the hall. He picked out a car each and every time he went. Finally, on the fifth time I asked him why he didn’t choose a puzzle or a book. He told me that the first car, the Batman car, was for him, but all the other cars were for his siblings. He missed the littles. The only time he cried was when he talked about his siblings. We were watching Despicable Me and Gru was reading to the three little girls and Ben sobbed. I couldn’t figure out what was wrong and he told me that it reminded him of story time with his three little sisters. That is the heart that my little Ben has. He may be five but he has an old, old soul and I have learned so much about truly living life from him.
God does have plans for my boy and only God knows the number of Ben’s days.
A person’s days are determined; you have decreed the number of his months and have set limits he cannot exceed. – Job 14:5
This time Ben’s hospitalization went so much better than I could have even hoped. Dan and I were completely blown away. Blown away by the gifts that God has bestowed. We adopted Ben after hearing “uncorrectable” by many cardiologists. We wondered if he would live long enough for us to adopt him. We brought him home and had his cath done and there was some difference of opinions on what could be done or what should be done. Someone added me to a heart group on Facebook and other heart mamas gave me HOPE. We contacted Boston Children’s and the rest is history as they say.
Ben had surgery. Ben did wonderfully. Except for a little problem with his rhythm, things went without a hitch. Ben was discharged one week after surgery. As we were leaving he was running down the hallway yelling “Momma! This feels SO GOOD!” Before surgery he couldn’t really run at all, and now he is running and laughing (even with a fresh sternotomy). Amazing.
The cardiologists and surgeon were tempted to try to close his VSD, but assumed since he is five years old, he is far past the stage where his pulmonary hypertension would be reversible. However, after seeing his great results from the arterial switch, the large gradient at his PA band, his SpO2 and his encouraging lung biopsy findings, they are now thinking that his pulmonary hypertension is a clinically reversible state. We will see how he does over the next 6-12 months and then consider taking down the PA band and closing his VSD with a fenestrated patch. We had given up hope that this was even possible, and now it looks like he might have a chance at a long life.
We went from no hope, to some hope, to great hope. We celebrate but this is no different than my time with Hopey. I still have friends that are hurting. I still have friends, that I have met through Facebook, who are wondering why the things that are happening to their child are happening. These friends have great faith and I watch the ways their lives touch others. They are a testament to God’s love for the orphan. They show what redemption and unconditional love really means. So in the midst of my rejoicing, I ask that you please continue to keep each of them in your prayers. Pray for God’s peace to surround their families. Pray for great healing. Pray that God will continue to be glorified in each of their lives. Please lift up Rini, Lizzie, Joshua, Kai, Evie, and Lily and marvel in the way God is using each of their lives.
Facebook page – Praying for Kai
