I AM THE PASSENGER 🚗

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Is anyone guilty of being a “backseat driver”?   Michael and I are about to depart on trip number 18 down to Pittsburgh; if you are counting “there and back”, that’s actually 36 different 4-hour windows of time where I’ve had the opportunity to be ‘that someone’ who provides unwanted driving advice…

We’ve all commented at some point: “Ahhhh!” -if the driver isn’t pressing the brake quick enough… “It’s a green light!” -if the driver isn’t accelerating the moment the red light disappears… or, “Maybe you should make a left here?” -if the driver isn’t choosing the shortest route…  I’m guilty; I’m a “backseat driver” that even likes to tinker with the temperature dial and browse through the radio channels when (I think) the Hubby isn’t looking…   

God Bless you, Michael! 

One of the toughest parts of this painful journey is the lack of control. The loss of control over many areas of Theodore’s life is absolutely tormenting.  Most of the time it feels like we’re playing a barbarous game inside of a real-life horror story: “cut your son’s chest open, then sew it back up… and… cut your son’s chest open, then sew it back up… to only… cut your son’s chest back open all over again!”.  It’s a mother’s instinct to control everything they possibly can within their child’s life in order to promote the most favorable environment for growth and development. Therefore, allowing machines and strangers to completely take over what I am naturally wired to do is not only painful, but it’s simply not normal.  It’s like constantly walking against a heavy current; life in the pediatric CICU is utterly exhausting because it opposes every single sense of control; each day I push forward simply trying to avoid being swept away by an undertow.

Naturally speaking, Theodore has backslidden quite a bit this past week.  His ‘lung disease’ is considered to be just as monumental of a problem as his “half a heart”.  Both the CAT scan and echocardiogram that Theodore had done on Wednesday revealed numerous issues such as his liver being enlarged, his gallbladder being filled with sludge, his right lung being slightly collapsed, and diminished squeezing from his right ventricle.  Due to these newfound ‘problems’, Teddy is back on the full-face CPAP mask, and his breast milk feed has been turned back off (again)… In this setback, I’m reminded that “I am the Passenger”…

Just like I trust Michael to safely transport us during the road trips between Pittsburgh and Buffalo, when I am anxious and afraid on this journey, I need to put my full trust in God (Psalm 56:3). Michael may be the operator of our physical car, but it is God who is the ‘driver’ of this entire journey.  How blessed are we that unlike Uber, God does not even charge us to sit in His passenger seat; we don’t need to use an app on our phone to show Him our location for pick-up.  To hitch a ride, I can simply call upon God’s name; He is always with me and I cannot be shaken if He is right beside me in the driver’s seat (Psalm 16:8). Theodore has given me such a precious gift; he has given me an opportunity to trust in God like I never have before… It’s easy to hop in the car for a road trip when you know the destination and how long it takes to arrive.  However, Theodore has helped me realize that I will never have an exact location to plug into the GPS; he has shown me the importance of truly “letting go” and “letting God”…  so much, that I can turn on the heated seat and cozy-up for a nap while God maintains a steady wheel.  And even when my own heart rate spikes, where I become dizzy with anxiety from watching Theodore desaturate on the hospital monitor, I am abruptly reminded that I am not the driver; that I’m only “along for the ride”.  I’ve realized the most beautiful part is that no matter where the rugged road leads, God is not a taxi driver that drops you off and leaves you stranded; He never leaves you alone at the destination; He remains; He stays closer than a brother; He never forsakes you (Hebrews 13:5).

And whether God is driving me through a scenic landscape or a torrential rainstorm where I can hardly see past the whipping windshield wipers, He is still my God; my Driver, who no matter what the conditions may be, takes one hand off the wheel, reaches over the armrest, and takes hold of my hand.  His promise of “do not fear, I will help you” (Isaiah 41:13) is like stumbling across your favorite song while scanning the radio channels.  So even on the hardest days, where all sense of ‘control’ is gone, I will jump in God’s passenger seat; I will trust my Driver; I will buckle up and enjoy the ride.

 Momma Bear, Praying Isaiah 53:5

#FallingRightSideUp

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MY TEDDY BEAR PRAYER

Lord, I pray that Theodore only continues to progress instead of regress. I pray that he continues to shock all the doctors by overcoming these next major hurdles in his path: 

1) I pray that In Jesus Name Theodore will do amazing during his big CATH LAB procedure coming up this Tuesday, January 21st.  I pray that Teddy’s right ventricle pressures will drastically improve; that next time they are checked, the Doctors will find the pressure to be under 10 mmHg.  His right ventricle is NOT getting tired and only getting stronger every single day. I pray that God’s will be done when it comes to the next heart surgery (The Glenn) or the heart transplant team getting involved, because I believe that Teddy’s heart is being made new with every beat. 

2) I pray in Jesus Name that Theodore will NOT need a tracheostomy; that his lung disease will be completely healed and he will maintain slow, steady, and deep breathing. Theodore’s lungs will expand; and especially the right lung will no longer be deemed “collapsed”. You are able, Jesus…

3) I pray in Jesus Name that Theodore is able to effectively wean off of sedation medication, milrinone, and EPI… You will fill that gap, Lord; You can comfort Theodore and be his bridge to sustaining life without extensive medication. 

4) I pray in Jesus Name that Theodore will be able to eventually EAT BY MOUTH.  His swallowing skills will be quickly developed and Teddy will show no signs of aspiration. A gastrostomy tube (G-tube) will not be needed and Teddy will enjoy Mommy’s milk with a bottle; and eventually FOOD at the table at home with his sister!

5) I pray in Jesus Name that Theodore will maintain all his cognitive abilities. His eye nystagmus will continue to improve until it is completely GONE! His MRI next week will show that his brain is free and clear of any new strokes. No clots will be formed from his next cath lab procedure on Tuesday the 21st; NO weapon formed against Theodore Nelson will prosper.  

My baby will LIVE and not die; Theodore will declare the works or the Lord. I will forever proclaim that it is already finished; God, You will restore Theodore’s health and heal Theodore’s wounds (Jeremiah 30:17).   Miracles are easy for my son’s creator and I know that you, God, are able to bring Theodore home with his own whole heart in Jesus Name.

… AMEN & AMEN !