Hospital Stays & Grace for Days

I’m adjusting to being a family of 5. I’ve always heard that going from 2 to 3 is difficult, and I can now attest that is not a lie. (Not that I ever imagined it was). Trying to get out of the house… Dear friend, please give up on the hope of me ever being anywhere on time again.

Since arriving in Texas our little girl has been showered with love by friends and family and I absolutely love it. (She received the same in Arkansas!) Our boys have also been getting the spoiled. I fear that their idea of Christmas time now means bunches of people giving them presents day after day, but that’s okay. At this point, I wouldn’t have it any other way. I think they’re adjusting extremely well to our little lady and the new order of things. They still adore her, and no one has gotten overly clingy. The true test will come when our vacation ends and ‘real life’ begins again. But let’s not get ahead of ourselves.

Our visit home has been interrupted by a few days in the hospital with our girl. We went to the ER to get a neurological consult for her head growth, which should have ended in being released with a  referral. Instead, she had a fever and we were transferred to a hospital that could better handle her unique pediatric and neurological needs. The first day was the worst. John and I were awake for around 36 hours with only intermittent moments of sleep, interrupted by cries and beeps and alarms and the constant sounds and movement of the PICU. Our baby wasn’t allowed to eat for 14 hours (imagine how well that goes with a newborn), and she was poked repeatedly for IVs and blood draws. Also, in the middle of the whole thing, I passed out from a combination of stress, exhaustion, and locked knees. That meant a 3 hour tour in the ER for me. Thank God my mom was able to come help me as I sat alone feeling helpless and frustrated and flooded with mom guilt over the whole thing. The hospital experience was an absolute roller coaster of emotions, exhaustion, and self-doubt. But we met some doctors and nurses who are absolutely wonderful. I truly believe God planned for us to go to the hospital when we did so that we could meet our palliative care doctor who is giving us the support we need. She eased our fears, gave us confidence in our decision making, and set us up with hospice here and will transition us home to Virginia with the support we need.

That being said, we also met with a neurosurgeon whose bedside manner and frank and rushed discussion of our daughter’s condition and our adoption left us hurt and angry. There are still misinformed people in the medical field who view our daughter’s life as less than meaningful. Fortunately, I missed that horrific conversation and John, who has been our rock, handled the event. We were reminded that even though the surgeon’s words were hurtful, our job is to show grace and love anyway. Our little Wonder Woman is telling God’s story of unconditional love and grace. It isn’t necessarily how I want to react when someone speaks of our daughter’s life as something of little value, but it is what God requires. I believe that Wonder Woman will change lives, and I know she’s started with ours. She will teach us, and others, what unconditional love really looks like. She will teach us how to live out that kind of love and to share it with others. And with unconditional loves comes unending grace. Not that I’m some grace giving saint, but looking back over this past year and even longer to see the pieces God has placed to bring us together, and seeing the way He has changed and prepared us, I can’t help but see the grace that has been extended to me over and over. His mercies are new every morning, for me and for everyone I meet whether they are “deserving” or not.

The beauty of grace is that it makes life not fair. (Relient K, Be my Escape)

Basically, I’m still learning. I’m learning how to do “normal” things, like wake up every 2 hours with a child who has her days/nights flipped. I’m learning how to navigate a new world of unique healthcare needs that has me asking a million questions trying to do right by my daughter. I’m learning how to balance the needs of my family so that each person gets the love and attention they need. And I’m learning how to show grace to others even when the mama bear in me wants to attack.

But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.” Therefore I will boast all the more gladly about my weaknesses, so that Christ’s power may rest on me. 2 Corinthians 12:8-9

The steadfast love of the Lord never ceases; His mercies never come to an end; they are new every morning; great is your faithfulness. Lamentations 3:22-23