You can count on one hand the amount of times I take my kids out of school for reasons other than illness. Today it may appear I had no good reason to take Cade out of school.
His older brother, Anker, had a doctor appointment with the Pediatric Cardiologist. Anker doesn’t often do well at doctor appointments. He equates doctors with poking, prodding, and the need to fight for his life. Growing anxiety is the way he prepares for the doctor. The last time we visited Dr. Van Gundy, Anker was too anxious to sit on the doctor’s table. So, the 6-foot something doctor bent his knees as he sat on the bare floor and invited Anker to lay down beside him. Anker responded to this gentle giant, and lay on the floor, allowing the doctor to examine his heart.
I was touched by a doctor who understood our son’s increasing anxiety. Try as he may, Anker could not utilize the resources to successfully express his fear. Dr. Van Gundy communicated compassion to our son, while offering us a great sense of relief. After all, it is no easy task taking a growing boy to intrusive doctor appointments…we have the bruises and bite marks to prove it.
There are two things about Cade which prompted me to take him along to this appointment. Cade adores his older brother. In the fifteen years of his young life, he has loved his special needs brother with a depth of understanding and strength which blows any observant onlooker away. He gently guides Anker to try the things the O.T. or speech therapist, or optometrist request Anker to do. He models the task, and playfully and patiently invites Anker to follow his lead. Down Syndrome individuals respond well to peer role models, and with gratitude, we have a wonderful role model sharing life beside his brother. Anker felt relief today, with his brother beside him.
We have experienced many doctors in our special needs journey: doctors who have little sense of compassion, those who lack understanding of our child’s specific needs, and those who are absolutely outstanding. These outstanding doctors are the ones who speak with compassion as they offer respect and care to our child. They are acutely aware of the specific special physical needs of our child, and are the very doctors we remain faithful to. Since Cade desires to be a doctor himself, we find great value in exposing him to the characteristics of these outstanding doctors. I knew Cade would offer support to his brother, while gaining an education himself.
Cade sat closely as the nurse examined his brother. Anker began to shout with anxiety, and Cade talked gently to his brother. Anker calmed down. Dr. Van Gundy entered the room and carried on a conversation with Anker, “You are growing whiskers, aren’t you, Anker?” He took time to visit with our boy. He took time to ask questions, and he gently examined Anker while sitting beside him, this time on the examination table.
Heart problems are prevalent in individuals with Down Syndrome. Many are born with heart defects and require heart surgery. This is one statistic we have not had to bear. But, Anker does have a murmur, which we must continue to watch closely. Dr. Van Gundy referred us to a Pulmonary Specialist to rule out sleep apnea issues, and blood tests to check for Leukemia, Diabetes, and thyroid–all medical issues which have a higher occurrence rate in individuals with Down Syndrome.
So, we take the yearly tests, and we continue on with life. We stop for a special milkshake topped with whipped cream and a cherry, then head back to school. Anker asks to stay home with me–feeling a little too stressed to return to his afternoon classes. Cade returns to his texts and tests; having gained a little more knowledge from experiencing a life lesson on character with his brother and an extra-ordinary doctor.
There we stood with our usual tear-filled eyes, looking out at the eyes of a group of tear-filled couples. It may have only been our second time visiting this church and its young family class, when my husband uncharacteristically stood in front of strangers and gave them our prayer request. These strangers enveloped us, laid their hands on us and prayed for our unborn child.
Men from this church began calling Anker and prayed with him over the phone. They offered to meet him for lunch and give him support and encouragement. The women visited me, sent me cards of encouragement and some even offered to sit beside me during my weekly appointments. These people were no strangers, they were the body of Christ at work, and they were strengthening us.
You see, the Perinatologist and all the other specialists had no clue we recently moved hundreds of miles from our support system. We moved from Southern California only weeks prior to becoming pregnant. The specialist didn’t consider our emotional needs or offer resources of support in our decision-making process. But our Abba Father knew what we needed.
News spread quickly across the miles and telephone wires. Loving phone calls and letters of encouragement often overwhelmed us. I kept a scrapbook of these meaningful thoughts from dear friends and family, or people who simply heard about our baby and were praying for us:
“At first I did not quite know how to pray, but want you to know we are praying for a miracle and that God will heal your baby. If God wants to take this baby home, we are praying He does it soon and that you two and the baby don’t suffer too long. We will continue to pray for the baby and two of you as long as is needed” -V & S
“I haven’t met you, but hope you feel the love and support of fellow believers. May you sense peace and comfort which only the Holy Spirit can delicately give” -M
“I will stand in the gap and pray when you can no longer pray” -C
The Holy Spirit is not limited by man’s inventions. He managed to put our names on the minds of faithful prayer warriors, without any means of Facebook or email. Here is a portion of a letter I received from one who was quickened by God’s Spirit on our behalf:
“I cry for your burden of concern for your son. What a strong little man he must be! As I pray for the health and survival of A.J. and for my baby as well, I guess I can only rest in knowing that they are in a special communion with God as they are growing inside of us.
About a month ago I felt a real need to be praying for you on a daily basis. That feeling started from a very vivid dream I had of you, Bonnie, trying to convey your emotions about the difficulties of conceiving to a room full of pregnant women. I was taking you from room to room in search of another woman who could empathize. A friend of mine turned to you and said that she understood. You reached out and touched her stomach and said, “No, you don’t”. The conversations were so incredibly clear that when I awoke from the dream I woke P. up to tell him about it. You were also a participant in subsequent dreams over the next couple of days. I knew that I had better be praying for you two. …And now, I know that I’ve been praying for the 3 of you! Isn’t our God Awesome and Caring!! Praise to His active hand and His Holy Spirit for allowing us to be connected and active with Him!
May the eyes of the doctors see and understand the authority of Jehova-Rapha! Knowing as I do that our great Creator loves our babies even more than we do. As our Creator with a hand that touches all things, I pray that You God, will bring miraculous healing to A.J. and that You will receive all the glory and Praise. Amen.” -T
Our baby was being flooded with prayer and we knew God was at work. It was time to go back for my first ultrasound after the diagnosis. The Perinatologist wanted to keep an eye on the fluid in our baby’s body. Anker and I had great anticipation for this moment.
I lay on the table with my heart beating calmly…waiting to see how our precious baby was doing. I had already asked if he was in any pain, and the doctors assured me he was not. The technician turned the screen away from us. She guided the cold wand slowly over my tummy. We studied her face as she stopped and glared at the screen. She turned and looked at the previous ultrasound picture in the file. She glared back at the screen, then back at the file again—and dismissed herself.
What were we to think? Long moments passed as we waited for her return. Our hearts were peaceful, we were bathed in prayer. Finally, the Perinatologist walked into the room with the technician beside him. He took over the wand and guided it across my tummy again. He glared at the screen and compared it to the file. Then he rolled his chair over to my face, “We don’t know what is going on, but the fluid is dissipating”. He couldn’t explain why. We were told to be “cautiously optimistic”.
God was at work! It was up to God what He wanted to do with this little life, and who He wanted to speak to through His creation. He didn’t promise me a baby, He didn’t promise me a perfect life, but God did promise me He would keep my heart and my mind quiet and at rest as I trust in Christ Jesus. This was a sweet time. To be at the mercy of trusting God for all our needs is a painful and a good thing.
I could tell you the tears stopped, but it wouldn’t be true. Often times Anker came home to find me singing in a warm bath… “Day by day I’m growing stronger, day by day the victory’s won. As I give my life to Jesus, day by day I overcome”. The warm water and praise songs soothed my wandering mind.
My heart was growing closer and closer to my fragile little baby. Being pregnant became a romantic-thing again; conversing and singing with my unborn baby as we trusted in the Almighty Creator.
Appointment after appointment, we continued to be “cautiously optimistic” as the fluid continued to mysteriously-No, miraculously-go away! When we chose life, I don’t know if we realized we were giving God the opportunity to show up in our lives. He was revealing Himself, His character, His faithfulness in new and incredible ways. The heart monitoring continued without any concern for the condition of his heart. Our baby boy was actively kicking and moving. “If this baby is born alive”, our doctor scratched his head and swore, “This will go down in the books.”
“I believe that I shall see the goodness of the Lord in the land of the living!
Wait for the Lord; be strong and let your heart take courage; Yes, wait for the Lord!” Psalm 27:13,14
We were now only weeks away from my due date. Much of the fluid had gone away. My O.B. began to discuss with me what the delivery room would look like. He said if the baby is born alive, he would be discolored, lips blue, and they would need to resuscitate him. He described all the extra personnel who would be in the room with us, while the emergency team would be waiting at the door of my delivery room. Here we were-six months after a death sentence-discussing a birth plan. The doctor repeated his mantra, “remain cautiously optimistic”.
The final ultrasound showed fluid left only in the kidneys. Now it was time to speak with the Neonatologist: the specialist who would deal with a living, breathing baby. He advised IF the baby is born alive and still has fluid, he could extract the fluid but it would only come back.
Our son was due June 21, but on the morning of June 4, my water broke. It was time to deliver Anker Josiah. Come back tomorrow for Part 4!!
P.S. Each of our life stories of trial, loss and pain look so different from the other. But God in His goodness remains the same. He wants to show up in your life. I hope you will be encouraged by my story and the video I have inserted as a gift…
