We are traveling. We are seeing doctors again. On the way to the airport I pray in the car: “Dear Heavenly Father! Please bless us! Lord, please protect Vince. No matter what happens up high, be there with us Dear Jesus Christ! Hold us in your Hands, because You are our shelter! Did I pack the spare bacteria filter that belongs to the spare suction machine? Lord, please help keep Vince’s blood oxygen level within the normal range, so we won’t have to give him any extra oxygen! Did I pack the speaking valve next to the oxygen concentrator that has the oxygen dispenser tube outlet? Oh Lord, my stomach is upset, but You told us not to be afraid! I am here, and no matter what happens Dear Jesus, I know it is through You! Give my husband peace as well! You are an almighty Lord, You can do anything! I am so grateful for everything in my life; I know that You will always take care of us! Where did I put the disinfecting powder for the spare tracheostomy tube? Jesus, You told
me things are this way so that Your glory can become apparent in our lives. This is what we trust! We believe in your salvation on this flight as well! Will the oxygen concentrator dispense enough oxygen if Vince’s level drops? I’m not afraid Lord – I take a deep breath, hold it in a little, and then slowly let it out – I am here. May Your holy will be done in our lives! Amen.”
” Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus.” Philippians 4:6-7
We settle on the plane. Vince is on my lap, with the Pulse Oximeter hanging on his foot. It shows 98% when we take off. Perfect! The engine of the plane starts buzzing, off we go. We hold each other͛s hands with my husband. Vince plays with his tablet. I smile at him, comment about what͛s happening, what comes after what, and I sweat. The plane takes off from the ground. Vince doesn͛t even want to look up from the screen; he is so involved with his game. I feel my face turning red. I swallow a big one, trying to balance the pressure change, and I ask Vince to do the same. The houses and the streets go further and further. Everything shrinks into tiny little dots. Our problems suddenly disappear as well. Now we are in God’s hands. He is the one who takes care of us! We see on the Pulse Oximeter that Vince͛s oxygen level starts dropping. We look at it every minute. Then it suddenly stops at 93%. Vince is in a good mood. He only looks out the window if I point at something; otherwise he is busy making food in the kitchen for the characters in his game and feeding them virtually. I look at the clouds, and I think how I am now closer to God even physically. We fly above the clouds, but our problems don͛t fly with us, they really are as earth-bound as we experience them day by day, getting through our difficulties.
Just out of curiosity we try to machines we brought, just to see if they work okay. The BIPAP (blowing air in using steam) doesn’t make any difference, but the oxygen concentrator takes only two minutes to bring Vince’s oxygen level to the one he had when we took off. Then my husband and I measure our own as well, and we notice that
they also fell to 93-94%. Thanks to God, Vince’s body reacted the same as ours. Thank you Dear Lord for being under your protecting wings!
“He will cover you with his feathers, and under his wings you will find refuge; his faithfulness will be your shield and rampart. Psalms 91:4
We undertook this trip because there was an orthopedic medial conference in Barcelona. Those doctors also participated whom we had been hearing about for years for having achieved several great results in the field of arthrogryposis multiplex congenita. We tried to get into such a European conference years ago where they were also present, but we were unfortunately rejected. I prayed to God for answers in regards to the tracheostomy tube, asking whether we should head in the direction of decannulation (the process of permanently removing the trach), and we received very specific answers very fast. I was told through Habakkuk 2:3 that I needed to be patient, God would not be far. Then my husband found a Polish hospital with an expert arthrogryposis team. He wrote to them,
and the chief medical officer answered the very next day saying that we were very welcome to their hospital in Krakow, and if we are up for it, he could organize an impromptu concilium with doctors from the USA who were coming to a conference to Spain at the beginning of May.
God is always very active in our lives. He gives answers with specific people, situations, we only need to ask for wisdom to understand His screenplay and need not to be impatient. Before I realized, we were on our way to Krakow at the end of April where we received an incredible gift from God. In six years this was the first time we could meet a family where the child had arthrogryposis as well as a tracheostomy tube. Then back at home we could barely unpack, we were already preparing for our trip to Barcelona where we met a hand surgeon who was very optimistic regarding a correctional surgery for Vince’s hand deformities. He operates on children with arthrogryposis who have a trach on a weekly bases. (A small note: anesthesia for children with a trach is very different, because they use different materials and a different technique, so it is important to us that the surgical team has experience not only in the area of orthopedics but in arthrogryposis as well.) At the beginning of the year I got a certainty while talking to God that we were going to receive great things in our lives again. At that time I thought the trach was going to come out this year, but now I am starting to see a
glimpse of Vince being able to hold things with both hands, and perhaps he will even be able to eat on his own. I am grateful Lord for having a plan for our lives! And I am even more grateful that You allow me to see this perfect plan, and I can feel safe through it, through You, Lord!
” I will stand at my watch and station myself on the ramparts; I will look to see what he will say to me, and what answer I am to give to this complaint. Then the Lord replied: ͚Write down the revelation and make it plain on tablets so that a heraldmay run with it. For the revelation awaits an appointed time; it speaks of the end and will not prove false. Though it lingers, wait for it; it will certainly come and will not delay.” Habakkuk 2:1-3