If I’ve learned anything through this journey, it’s the fragility of life. These pictures are only a week old, yet our current situation depicts nothing close to the care-free playfulness of silly unicorns and an adorable rainbow… But anyone who knows our daughter MacKenna, knows very well that ‘unicorns’ are her current obsession. And anyone who is a parent knows very well the importance of protecting your child by making the best of unfortunate situations. So, that’s what’s we do. Michael and I reluctantly dressed up as unicorns for Halloween to appease our 4-year-old; its such a fun holiday for a little girl to innocently “play make believe”, and for one day of the year, she has the perfect excuse to demand that everyone around her “play along”, too. Accordingly, before taking this picture, MacKenna easily convinced Daddy to chase her in circles around the couch; it was a game she titled: “unicorn tag”. Michael threw his pretend “hoofs” in the air, uttering a loud unicorn “neeigh!”; he began to dart towards the little pink-winged creature that had already pranced to the other side of our family room. I couldn’t contain my belly-laughs as the two unicorns gained speed, making sharp turns around our coffee table. However, they quickly petered-out and it all ended with two white piles of fluff giggling on the floor. While at home, I sometimes get lost in happy moments like this; sometimes even for a good 10-15 minutes, before my heart suddenly drops to my stomach, giving no warning at all; my heart constantly reminds me that a piece of it is missing.
Just as we all dressed up as unicorns to appease our daughter, we constantly ‘mask’ our emotions. In order to keep our jobs, maintain our household, and continue to properly raise our first-born child, Michael and I have been “playing pretend” since June 3rd, and let me tell you… it’s an exhausting game to play. Everything is not always as it seems because behind those two adult unicorn suits are distressed parents, who cringe every time the phone rings. Everything is not always as it seems because under that sparkly pink unicorn horn is a “big sister” who constantly asks when her “baby brother” can come home so she can help feed him. Everything is not always as it seems because that rainbow blanket, tucked under those edible newborn cheeks, covers a long red chest scar from open heart surgery, pink raised neck markings where a blood clot formed from ECMO support, blue bruising due to missed IV attempts, and a PICC line that was freshly stitched into a sweet chubby thigh. Everything is not always as it seems, but putting a fake smile on your face is more conducive to providing a sense of normalcy in a situation that is anything but normal.
Last Thursday, we were a bunch of ‘crazy unicorns’ at home, just “waiting for our rainbow”… and that same day, the phone rang. We found out that “our rainbow”, 237 miles from home, ended up destatting. Theodore’s heart-rate quickly dropped, and he needed an emergency intubation to survive. He went from having a practically empty IV pole next to his crib, to the pole being fully stocked once again with new meds. It’s extremely disheartening to see your child take so many steps backwards in “recovery”. And here we are a week later; also another ‘extubation’ and ‘re-intubation’ later… Theodore’s perfusion is becoming an issue as he continues to grow; his single ventricle heart is having a hard time keeping up with demand. In the doctor’s eyes, Theodore is more or less at a current “stand-still”; they are finding new ‘problems’ almost everyday, including strokes and a more recent blood clot in his left leg. We were informed to take some extra time off of work this upcoming week in order to stay longer in Pittsburgh for ‘Care Conferences’ amongst multiple teams of health care professionals regarding the next step for our son. The brutal truth is we are now at a turning point in this journey where very hard decisions will have to be made… I’m not(!) scared, in Jesus Name… But I am requesting your extra prayers. And yes. I am still begging God for a miracle…
Most of all, every day, between every prayer, I will still hold out, waiting on my rainbow… And the best part is, with Theodore as our rainbow, we don’t have to wait until the storm is over to see his beauty. At just two months old, Theodore continues to teach me so very much. My little rainbow teaches me that we don’t have to wait for the storm to pass; that we need to find joy in-between all the clashes of thunder. And my handsome ‘Teddy Bear’ demonstrates that when lightning seems to viciously strike in the same place twice, you can use its explosive energy to bounce back in order to beat the odds. Theodore is my rainbow from God; my perfect gift; my promise after rain; his face brings me absolute pure joy in the midst of sadness. Even despite my moments of doubt, deep down, I believe with all my heart that the greater this storm is, the brighter my little rainbow will shine; my baby boy will overcome this battle and shine through the darkest clouds, revealing God’s Glory because His name is above ‘HLHS’. A rainbow symbolizes hope for better days because God is always faithful, keeping His covenant of love for a thousand generations (Deuteronomy 7:9) …And when some dark clouds roll in again, if my emotions do get the best of me, I already know how to “play pretend”; I’ll still wipe the tears away and even re-apply the layer of mascara through the rain. I’ll keep my head held high because my help comes from above (Psalm 121:2)… and the truth is, I’ll never see my rainbow if I’m looking down anyway…
-️ Momma Bear, Praying Isaiah 53:5
TEDDY BEAR PRAYER:
This is a “all hands on deck” type of week when it comes to praying … today is the first day of A BIG WEEK for our family. Tomorrow, Monday morning will become even more intense. This is a week where many pivotal decisions will be taking place amongst both the medical staff and us, as Teddy’s parents. We need God’s favor on all counts; through every meeting; through every moment in Teddy’s CICU room.
Please pray that even when things are not going as we have hoped for, that we still have faith to cling to God anyway.
Please pray that all the surgeons and CT surgery staff, including Dr. Morell, become aligned on the very best plan for Teddy. A plan that will not cut his years short, but a plan that will bring him home to us in Buffalo. A plan executed out of a special place of compassion for our son and his family.
Please pray that my precious baby boy, Theodore, remains calm, stable, and at PEACE; not experiencing any unnecessary measures of pain. And even if a time comes where ‘pain’ would be inevitable, I pray with all my heart that Jesus holds my baby when I can’t; that Jesus would become a barrier and protect my Teddy Bear from any future discomfort during upcoming procedures.
Please pray that the big blood clot in Teddy’s leg miraculously disintegrates; pray that no other random blood clots continue to form, jeopardizing Teddy’s brain function due to them causing strokes. Hematology will get to the root of the problem and/or figure out the perfect balance of anticoagulants in Jesus Name. Teddy will regain better pulses in his left foot/ankle.
Please pray for Theodore’s right ventricle. It will regain strength. The pressures will begin to improve, coming back to the numbers of ‘7’ or ‘8’.
Please pray for Teddy’s lungs and the fluid they found surrounding the lungs. Pray the fluid diminishes on its own without the need for more chest tubes to be placed.
Please pray that God is simply waiting past our point of ‘expectation’ to reveal His Glory.
Above all else, I’m praying with everything in me that my baby boys heart miraculously becomes WHOLE, that his left ventricle miraculously APPEARS, that this nightmare of ‘HLHS’ would go away forever… that we will have many many years still to come with Teddy on this side of heaven… AMEN, AMEN & AMEN !