The Ups and Downs and All Arounds

Yesterday was super rough. Oddly enough, it started out with some exciting news from the surgeon that based on how incredibly well Claire is doing (she was down to just Tylenol for pain relief and moving all over the place), we may be discharged. All Claire had to do was poop and we’d be on our way.

How exciting! Let’s start cleaning the room up, packing our stuff and enjoy Claire as she crawls around the room, back to her old curious self. And then… She projectile-vomited like we haven’t seen since she was two months old and this whole journey began. To say it wasn’t a bit traumatizing would be a lie and from there the day just seemed to get worse and worse with her throwing up anytime we tried to feed her the Tylenol for pain relief, then a procedure that was supposed to help her poop, that had both Justin and I in tears afterwards it was so hard on her.

We were both stressed and frustrated by the situation and pent up with all this emotion from the week. Our exhaustion from the emotional ups and downs, combined with being confined in this tiny hospital room began to get the best of us as we lashed out at each other.

Remember in my last post when I said I would, “look up in faith rather than lash out in fear?” Well, let this be an example for how hard it is to live a life of faith and to put complete trust in Our Maker. We are all flawed, imperfect humans with an array emotions; and though we know and really want to live with grace and patience and love, we sometimes (no a lot of times) fall short! I went to bed last night feeling a lot of guilt and regret and also just a deep sadness for what I had witnessed Claire have to suffer through.

A friend of mine, who is a fierce, God-loving woman, sent me a beautiful picture this morning of her beach sunset with this text: “His mercies are new every morning. Praying prayers of peace, healing, comfort and joy for your sweet Claire.” Her beginning words come from Lamentations :22-23 which says:

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

These words were exactly what I needed to hear and remind myself of as I woke up this morning and she knew exactly what I needed prayer for without knowing it: peace and healing from the awful day yesterday, comfort in believing and knowing I am the best Mom for Claire and I am serving her well in this battle and joy in the promise of a better day today.

So is today any better, yes and no. Claire just threw up in a pretty scary moment while Justin was out getting lunch and I am struggling with not knowing why. We still are yet to see a dirty diaper (man I’ve never wished for poop so much). But, today I feel renewed in peace and comfort and joy that only comes from asking the holy spirit to provide our daily bread needed for today and only today.

May you all experience God’s love today, feeling his presence known through all the highs and lows that today may bring.

Alisia

Update: Since writing this earlier today, Claire had more help from the medical team here at Children’s and we have poop – Praise the Lord! We are hoping for a ripple effect that now that her digestive track is moving, she will be able to hold down all her feeds! She will get another x-ray tomorrow to make sure everything in her system is moving as it should and as long as she’s not throwing up we will be heading home!