I have moments where I want to throw in the towel. I want to be done. “Lord I’m holding him in open hands, why haven’t you taken him yet!” This is all hard. The daily routine of extra steps, extra cords, extra monitors, extra precautions, extra hospital stays. An almost four month old that feels like a newborn. Who requires around the clock attendance and monitoring. An almost two year old who has to be okay with our routine changing on a dime when baby brother needs more of mom and dad, when baby brother needs weeks in the hospital. Who has to be okay with playing at home instead of at the park because we have to protect brother’s immune system the best we can. Will we ever get past the “newborn phase” that is no sleep and extra needy. Will we ever get more time at home than we’ve had in the hospital?
I struggle at times with wondering if we made the right decisions. If surgeries and interventions were what was best for Ellis. Should we just have held him and loved him for the short time he would have lived without? Should we have only let him know love and snuggles instead of medicine and intubation tubes and pricks and needles? I believe and know that when God does choose to take Ellis home that Ellis will be fully healed. I struggle with the desire of wanting that for our baby boy and the desire of wanting every moment with him here in our arms. What is God doing here? I know He’s at work. I’ve seen the fruits of that work as Ellis’s story provides hope to a family with a similar diagnosis or someone tells me for the first time in twenty years they have prayed again. I see it when I force my eyes up instead of down. It’s a daily, sometimes hourly exercise to get those eyes up though. It’s a battle of guilt from the enemy and hope and courage from the Father.
And I’m so grateful for these hard days and challenging moments. I get to hold and see my baby. This is a blessing. It is. But it reveals the brokenness of this world. It shows that because sin entered the world, Ellis is not healthy. This is all not normal or easy or perfect. It’s plans changed and dreams crushed. It’s sick instead of healthy. But one day, one day, death and sickness and tired will all be replaced with life and perfect healing. With dancing and joy. I know that day is coming because God said it is. These moments will be but a speck.
“So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal.” 2 Corinthians 4:16-18
We’re back in the hospital. Back in the PICU. Ellis caught rhino virus which sent him into respiratory distress. He is intubated and recovering. The doctors say it could take weeks for Ellis to get over this. We are following his lead and weaning support as he tolerates. Another blog post with our time at home and the story of landing back here to come.
God is in this. He is for us. He is not shocked or frazzled. He is good.
Thank you for following along. Thank you for hoping and praying with us. Thank you for encouraging when our hearts need it most.
“He will wipe away every tear from their eyes, and death shall be no more, neither shall there be mourning, nor crying, nor pain anymore, for the former things have passed away.” Revelation 21:4