HIS STORY 📖

Who doesn’t love a good drama? …Perhaps one with a juicy plot twist filled with new characters and unexpected events? …But what happens when the screen goes black and the white block lettering emerges: “to be continued…”?  And better yet, how do you feel when it’s YOU staring as the main conflicted character?

I was pouting. Like a 3 year old who got denied dessert before dinner, I threw a tantrum and placed myself in timeout.  Wednesdays are plain hard; Wednesdays are always filled with tears.  However, ‪this Wednesday‬ and last Wednesday were hard for different reasons.  Today I had to kiss my baby goodbye and say “see you next week” for the 23rd time. You’d think I’d be better about containing my tears at this point, but as I tiptoe backwards out of Teddy’s room, my heart starts to beat a little faster and inadvertently turns on a faucet; all I can do is quickly dry the stream of tears flooding my cheeks as I dart towards the elevator, because God knows if I walk too slow, I may change my mind and turn back…  However, last Wednesday was different; I opted to stay in Pittsburgh because I desperately wanted more time with my precious boy… I was alone with Theodore for four days while Michael went back to Buffalo for work, and unfortunately during that timeframe I had to process news from the surgical team that was “hard to swallow”.  Sometimes the worst place you can be is in your own head.  After a few days of isolating myself while dwelling on all sorts of feelings, I was finally ready to emerge from my little “timeout corner” in Teddy’s ICU room… So here comes the commonly practiced and anticipated part following a “timeout”; the part where I talk-it-out and come to terms with what happened, and more importantly a better understanding of my valid emotions…

Theodore had his big cath lab procedure last Tuesday, February 18th.  Although the new numbers delivered were more ‘favorable’, they did not meet the exact criteria to immediately move forward with the next surgery (The Glenn).  We eagerly awaited the many teams of doctors to weigh-in and come up with a conclusion.  Wednesday the 19th arrived, Michael left to go back to Buffalo, and I had some sense of relief by not having to leave Teddy; I was gearing up for a great “mommy & son day”!  However, shortly after, the surgeons came to inform me that as a result of further discussion at their conference, they would like to wait an additional 4-6 weeks to see how Theodore develops before proceeding forward with the next step.  I somehow managed to plaster a fake grin on my face and utter a polite “okay” with a quivering voice, all while physically biting down on my bottom lip in order to refrain from crying right then and there… Thinking to myself: “No, Alex, not ‪this Wednesday; for once there’s NOT supposed to be tears on ‪THIS Wednesday!” …But it was too late.  The group of surgeons exited Teddy’s room, and I stumbled behind Teddy’s bathroom door, abruptly exhaling from that unexpected punch to the gut.  It was like a trial by jury, where I felt like we were sentenced to 4-6 more weeks in “jail”. Pittsburgh is far from home; we’re isolated from friends and family and all sense of normalcy.  I respect the surgeons, as they most definitely had reasonable cause to recommend a longer wait-time before Theodore’s next surgery. However, that additional ‘4-6 week wait’ recommendation is initially interpreted from a mom’s point of view as:

“that’s another 32-48 more hours of driving in the car”…

“that’s an extra 16-24 days of not being able to see my daughter”…

“that’s 4-6 more times that I have to say goodbye to my baby”…

Nevertheless, all of these unfavorable perceptions of “what waiting means to me” pales in comparison to the main objective: the need to open up my baby’s chest yet again for surgery…

So here I am, stuck at “to be continued…”.  I’ve quickly come to realize that I may be the main character, but it’s not MY story … It’s His Story.  It’s not an autobiography, as it is God who holds the pen. I do not know how the story ends, but I do know that God is the author and finisher of my faith (Hebrews 12:2), and will eventually conclude each chapter in a way which brings Him glory.  Although I pray that this current chapter at Pittsburgh Children’s Hospital comes to an end sooner than we think, I am choosing to believe that every twist and turn God writes into His story is for the best.  By God’s grace, I am learning that when the plot thickens and the circumstances don’t make sense, it’s not our job to worry about what comes next; the Author is in control of His story line and the premise is always to prosper and give hope to us as the main character (Jeremiah 29:11).  Therefore, as His Story continues, it is my honor to remain casted as His main character. Luckily, God has many stories; matter of fact, He has a story for each of us, which allows everyone an opportunity to be the “star of the show”! Even though at times my impatience has tried to steal the pen right out of God’s hand, He has remained faithful (Deuteronomy 7:9).  It has been inside the chapters of waiting that my love for God has deepened.  It has been inside the chapters of turmoil that my reliance on God has strengthened. His Story is my well-written biography, where the dreaded segments of “to be continued…” are strategically placed inside certain chapters with the sole purpose of reinforcing complete trust in my God; my Author.

 Momma Bear, Praying Isaiah 53:5 

#FallingRightSideUp

TEDDY BEAR PRAYER

Lord, I pray that Theodore will miraculously come through and recover from this next open heart surgery in record time …

1️⃣ I pray in Jesus Name that Theodore will not create new collaterals, causing more increased blood flow to his lungs. I pray for his heart and lung pressures to further decrease between now and mid-March, allowing The Glenn surgery to be a complete success.

2️⃣ I pray in Jesus Name that Theodore’s lungs will remain expanded; that pulmonary edema will no longer be an issue.  I pray that as Theodore begins to wean off diuretics, that his chest x-rays still continues to show improvement.

3️⃣ I pray in Jesus Name that Theodore has no more fevers and that no new infections will come near his body which would deter his upcoming open heart surgery. I pray that no weapon formed against Theodore will prosper in any way shape or form.

4️⃣ I pray in Jesus Name that Teddy’s swallowing skills will be quickly developed and Teddy will show no signs of future aspirations.  That he will pass his swallowing evaluation with breastmilk this week and begin taking FOOD BY MOUTH. I pray that a gastrostomy tube (G-tube) will NOT be needed and for all oral aversions/gagging to completely stop.

5️⃣ I pray in Jesus Name that Theodore will not only tolerate but do exceedingly well with his NJ being converted to an NG for breastmilk drip feeds this coming weekend. By your grace, Teddy will continue to tolerate his full feeds, and his stomach will properly expand to contain the entire volume.  I pray that Teddy will not regurgitate any of his feeds, and only enjoy the effects of having a full-belly for the first time ever.

God, WE THANK YOU that Theodore has had a wonderful 5 days in a row.  By your grace we have seen him smile and his eyes better fixate on ours.  We believe that You will fully restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17), and that you continue to bless him with pleasant days ahead. I pray that Theodore will fully enjoy his sister’s company again during this upcoming weekend.  Thank you for the miracle of our Theodore Nelson.
… AMEN & AMEN !