There’s a famous poem about Down syndrome called “Welcome to Holland.” On our first day in the NICU, I received a large, white binder full of information on Down syndrome and local resources. The poem was the only thing I could bring myself to read. I found it comforting in the middle of the chaos. As we’re nearing Redmond’s first birthday, I see the truth in the concept. So here is my (longer) description of the move our family has experienced in the last 11 months… To read more, click here.Read More
***This post is a continuation of my previous post, Fear, about the birth of my recent child who had severe medical complications and Down Syndrome. To read more about Redmond and our story about him, you can see my public Facebook posts beginning March 1, 2017, and click here.***
In the middle of my struggle with fear surrounding Redmond’s birth and the first couple months of his life, there were pockets of peace too. Although fear threatened to swallow me up, I didn’t have panic attacks. I didn’t come undone. I kept putting one foot in front of the other, and I used the tools at my disposal to get to peace.
From the moment I knew I was pregnant with Redmond, a sense of dread and unrest came over me. I spent the first two weeks after that positive pregnancy test praying desperately for God to intervene in whatever was wrong. I gave Him my permission (as if He needed it) to take the baby if there was something terribly wrong. I waited for a miscarriage. I could not shake the sense of dread.
After two weeks of crying out to God, I felt His presence one morning like a soothing balm pour over me. My hands flew to my belly and the words that came to me were, “Life and health, joy and peace.” Peace came with those words. Every time the fear and dread tried to return, I comforted myself with those words.
The morning of our 20-week ultrasound, which was an extra-fancy one for high risk pregnancies, I felt like I was trying to walk in mud. My feet simply wouldn’t go. I was stuck. It was everything I could do to lift them up and move them forward, so afraid of what I might find out that day. After the hour-long ultrasound, we were ushered into the grim-looking doctor’s office. As she launched into a lecture about managing gestational diabetes, I struggled to comprehend what she said.
Finally, I stopped her and asked bluntly, “Is my baby okay?”
“Hmmm?” She looked up from her paper, confused.
“Is. My. Baby. Okay?”
“Oh, your baby is fine. It looks perfectly healthy. Were you worried?” Clueless doctor.
“No Down Syndrome?” I remember that I specifically asked about that. They measure EVERYTHING in this ultrasound. A friend told me how she was warned that her daughter had a shortened nasal bone, which is a soft marker for Down Syndrome, but her baby was born just fine.
The doctor explained to me that they can’t tell for sure without several more tests, and even then they can only tell you something like if there’s a one in four chance that the baby has DS, but she’d be happy to run them if we wanted them. At the point where we were, she felt confident that there was only a slight chance that the baby had DS.
Relieved that the extensive ultrasound had shown no markers for DS or other birth defects, we again declined further testing. We agreed that we would love and accept any child God gave us, and there was little point worrying ourselves to pieces about it before we could know 100%.
I spent the remainder of the pregnancy feeling harassed and annoyed by the management of gestational diabetes and hyperemesis gravidarium (which included extreme motion sickness, making me sick even when I walked). Pregnancy is a real challenge for some of us, but I determined that 9 months of difficulty was worth the lifetime of joy that a child brings.
Towards the end of the pregnancy, I received weekly ultrasounds and non-stress tests. The baby’s heart never did what it was supposed to during the NSTs. It was supposed to go up 15 beats per minute for 15 seconds, but it never did. So I’d get another ultrasound, which would confirm that everything was okay, and we’d go on another week. We also knew that I had high amniotic fluid and the baby had a small amount of water around the kidneys. Both of those can be indicators of DS, but DS babies typically measure small, especially their heads. Redmond topped out in the 98th percentile with an average head size.
There were multiple tests and concerns from the doctors with my previous pregnancies and everything worked out just fine. I kept reminding myself of that, repeating the words, “Life and health, joy and peace“, and doing my best not to worry.
On the morning Redmond was born, I watched a YouTube video by a naturopath about managing anxiety. I’d seen it before and was looking for it to send to a friend. During a time when I should’ve been the most anxious, I was fairly calm. When Rick came back that morning, I firmly told him we had to get to the hospital. I was very concerned about the baby, but I wasn’t freaking out. When the nurse told me that the midwife was coming to break my water, I stayed calm. When they told me that the baby was in distress and I was headed toward a c-section, I handled it well. The words of the doctor replayed in my mind. I had a choice how I would handle the situation. God had promised me “Life and health, joy and peace.”
As I stumbled through those first few days of Redmond’s life, I found it hard to comprehend the things the doctors said. The words they used were terrible, and they definitely brought fear with them, but I also had a sense of peace. My baby would be okay. He didn’t have Down Syndrome. It may look like that, but the test would come back clear. Wouldn’t it?
I had to sort through what was numb denial, what was actually happening, and what might happen in the future. God might have promised me life and health, joy and peace, but at that moment I was facing sickness, fear, and sadness.
At my command, Rick left my side to be with Redmond and calmly talked to him and held his hand so our baby would sense something familiar in all the chaos. When I squeaked out the words “Down Syndrome” and “sickest baby in the NICU” to my sister, barely able to make my mouth form the words, she dropped everything and flew to my side. When the doctors determined that Redmond needed the last-resort heart and lung bypass (ECMO), my mom came to be with us. My dad, who was working and couldn’t take time off, hit his knees. For that first week of my son’s life, my dad fasted and prayed. He barely slept, waking every few hours to get back on his knees and pray some more. He prayed for Redmond, but he also prayed for me and the rest of our family.
When fear tried to take me over, I had a husband like a rock, standing firm and telling me it was all going to be okay, I had a sister and mother helping me laugh and letting me cry. I had a daddy interceding for me. He reminded me that I found strength and felt God’s presence in music. Thanks to his prompting, I turned on the praise music and sang my heart out.
Every morning while I got ready to go to the hospital, I sang. When I went to the pump room for 20 minutes every three hours, I listened to praise music and sang. I sang over my son. I sang praise to God. I couldn’t concentrate to read the Bible much. I barely had words to pray. But I sang and sang and sang. Phrases that stand out to me from that time…
The waves and wind still know His name
It is well with my soul
This mountain that’s in front of me will be thrown into the midst of the sea
Through it all, through it all
My eyes are on You
Through it all, through it all
It is well.
When I listened to the words of the doctors and nurses, when I got my eyes off Jesus, fear snuck in. I’d often find myself staring at objects, trying to figure out if I was crazy for believing that my baby would be okay, if I needed to accept reality and stop living in denial. But I had this peace that he’d make it through. We’d take this precious boy home with us. He wouldn’t need heart surgery. Surely by the time we left, he’d be off oxygen and his feeding tube.
During my pregnancy, “It’s Your breath in our lungs, so we pour out our praise, pour out our praise…” were song lyrics that swept over my heart. I’d think of the baby growing inside me and pray for his lungs. Another song that ministered to my heart said, “Your love is like radiant diamonds, bursting inside us, we cannot contain… God of mercy, sweet love of mine, I have surrendered to Your design. May this offering stretch across the sky, these hallelujahs be multiplied.” I’d think of the cells inside me, dividing and growing (bursting!), only able to be contained for about 9 months. I’d think about my “offering”, submitting to another difficult pregnancy and trying so hard to be gracious and patient through it, and beg God to honor my sacrifice. As I sang those songs, there was no medical evidence that he had any issues at all.
My main problem finding peace during the storm was not questioning God, but questioning myself. Was I sane to believe Redmond would be okay? Was the peace I felt actually shock and denial or a gift from God? Or both?
Much of my fear stemmed from the knowledge that God is running the universe. He has very seldom seemed to take my wants or desires into account as He does, so I braced myself for the gut punch of disappointment, the disbelief that what I had hoped for was gone. My brain played tricks on me. Strong medication taken for pain from surgery affected me. I felt acid rising in my throat, burning me when I tried to pray for God to save Redmond’s life and heal him. Hope and peace were mingled with fear and dread. Surely God would do what was ultimately best for us, but how much was I going to hurt in the process?
I submitted myself to His will and waited to see what He would do. I asked my friends to pray because I couldn’t. I allowed the Holy Spirit to intercede for me with those groans I hear so much about.
Romans 8:26 – 27 says, “Likewise the Spirit also helps in our weaknesses. For we do not know what we should pray for as we ought, but the Spirit Himself makes intercession for us with groanings which cannot be uttered. Now He who searches the hearts knows what the mind of the Spirit is, because He makes intercession for the saints according to the word of God.” (NKJV)
Please save my son, Lord. But not my will but Thine be done.
I kept hearing the words, “He spared not His own son.” I had no guarantee that He would spare mine.
Please hear this point before you close your computer and shut out these horrific thoughts… Please understand me. I knew that if God did not spare my son, He would give me the grace to get through the horrific loss. I had no doubt that if my son didn’t make it out of that place alive, God was indeed running the universe and it was somehow in His perfect will for my life to take Redmond home so early. The thought horrified me, but even in the worst moments, I knew that God would walk me through it all. I was not alone.
Knowing so well that God owes me nothing, that any loss I face is nothing compared with the trauma of His own son’s death, I relish even more, savor, and bask in the beautiful YES that He gave me.
My precious baby boy, a cuddly bundle of smiles and love, sleeps soundly in my arms. This baby who came so close to death, who should be terribly delayed and have all kinds of problems as a result of the very medical interventions that were used to save his life, appears to be doing just fine. He coos and “talks”, sings with me. He actively rolls from back to front and back again, chewing on his thumb and reaching for toys. He laughs out loud, startling himself with the sound. He’s growing like a weed, wearing nine-month sleepers at 4.5 months old. He sighs deeply when he sleeps, burying his face in my neck, and tries yet again to pull the oxygen tube out of his nose.
He’s still on a feeding tube, still needs supplemental oxygen, which I wish away many times every day. But after all he’s been through, what are these little annoyances? I adjust my attitude to thanking God for these tools that I have to keep Redmond healthy, thriving, and growing. He should’ve had hearing loss, but he hears perfectly. He should’ve needed heart surgery, but the holes in his heart are closing. Pulmonary hypertension is GONE. He’s active, alert, and cheerful. He sleeps through the night like a little champ.
The chromosome test for Down Syndrome came back positive, and it took us a while to deal with that. He has an extra chromosome, which was present at conception and not a result of the complications of pregnancy or the medical treatment he needed early on. With it comes low muscle tone and the possibility of many other physical and intellectual handicaps. I have prayed over this child though, emboldened by God’s miracles in his life so far. I pray that he has the mind of Christ, that his eyes see truth, and so on. I pray that he is ABLE, not disabled.
My heart lurched.
Many parents of children with DS report that they feel very lucky to have a child with DS, and Rick and I have shaken our heads in confusion. Why are we lucky to have a child with physical and intellectual impairments? Is low muscle tone and a congenital heart defect a gift?
But this God I serve, He works in mysterious ways. What is mystery to us is great glory to Him. And so, although I cannot claim to understand at this point, I have decided to embrace this gift in the same way I embrace the God I do not understand.
My child, the one with the extra chromosome I so greatly feared, is Life and Health, Joy and Peace to me. He is Life and Health, Joy and Peace to the entire world. The fact that he has a chromosomal abnormality is not a burden, but a gift.
I will still pray for him to be completely healthy and whole, to have perfect vision and a strong body. I will still pray for him to be able to walk and talk with ease, to be able to comprehend all that he needs to understand in this world. This child, and his amazing siblings who have embraced him with all their hearts, will drive me to my knees more than anything else ever has. I will pray for all three of them with all my heart. But Down Syndrome is off my prayer list. I write this with a thankful heart, full of peace: It is our mysterious gift.Read More
Psalm 29 (NLT)
10 The Lord rules over the floodwaters.
The Lord reigns as king forever.
11 The Lord gives his people strength.
The Lord blesses them with peace.
Today I wrote this in my journal: “The Lord DOES rule over the floodwaters. It may appear that my life is under water right now, but God rules over those waters and I am safely held. God has given me peace, just as the psalmist writes. God is my strength during this time of testing, when my life seems to be metaphorically under water. I think I might be just as blessed right now, in the middle of such strange circumstances, as I have ever been. I can FEEL God’s arms around me. I can feel His embrace, His love, His acceptance, His mighty protection and peace and joy. What else do I need in life? If all I ever have is this, I trust God to expand my ability to endure and to become the woman He is making me to be. Change me, Lord. Help me to endure and to become stronger. Let the sun shine on me, causing the waters to reflect off me and display Your glorious shine even in this deep place. Help me to learn to breathe under water!!!”
God has supplied my every need, given me tremendous peace, and filled me with wonder. Circumstances do not determine my joy and peace. My relationship with the Lord takes care of that.
These things are hard to explain in words, but I’m trying. If I have to be covered by floodwaters to learn that the joy and peace of God are mine, regardless of my circumstances, then it is the greatest blessing I have ever received and I stand in awe of God. Circumstances have just lost their power over me.
Yea, though I walk through the valley of the shadow of death, I will fear no evil, for Thou art with me. Thy rod and Thy staff, they comfort me. (Ps 23:4 KJV)
After you’ve been “wowed” by God, there’s no turning back. I pray that each one of you reading this today will come to understand the beauty of what I’m trying to communicate. My words are feeble, but my prayer is that my life will reflect the glory of God in a way that will speak volumes more than I could ever say or write.Read More
I’ve become one of those people who pass much of their day drinking coffee in a coffee shop or bookstore, working on their laptops. I’ve always wondered why people do that. Don’t they have a home or an office? Doesn’t the constant stream of people and conversation around them bother them? Don’t they have somewhere else to be?
I have a comfortable home with plenty of peace and quiet, but I get tired of staring at the same four walls at home, chores all completed, fighting the urge to watch television all day in a state of numb oblivion. The coffee shop and bookstore have free wireless internet and perfect coffee. They allow me the faint distraction of evaluating other people’s fashion choices, in the most Christian way, of course ~ “Bless their hearts!” (How can you not notice and wonder a bit when the 60ish guy with a jet black mullet, choker necklace made of bones, short black shorts, bright red socks, and black sandals comes strolling in? My own fashion sense isn’t always perfect, but some things just beg you to notice and have an opinion). It also occasionally allows me to run into someone I know and have a brief conversation, and keeps me from numbing out at home.
I sit here with plenty of time to think, feeling the weight of my situation. For months now, God has felt very near to me in a way I’ve never quite experienced before. There is a sense of peace and inner joy that I cannot describe or even fully understand myself. I’ve been free of anxiety attacks and depression, in spite of the tremendous changes and stress-inducing circumstances in my life. Technically speaking, it’s not much of a stretch to say that I should be huddled in a corner, drooling, and mumbling something incoherent over and over again…
And yet, here I sit, calmly typing away at Starbucks, giggling at other people’s fashion sense, or lack thereof, drinking CAFFEINE. In the past, the littlest bit of caffeine sent me right over the edge, but I’m on my second cup without a hint of a side effect. Who am I? The answer is, I learned to live out Philippians 4:6-9.
Philippians 4:6-9 (New Living Translation)
6 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
8 And now, dear brothers and sisters, one final thing. Fix your thoughts on what is true, and honorable, and right, and pure, and lovely, and admirable. Think about things that are excellent and worthy of praise. 9 Keep putting into practice all you learned and received from me—everything you heard from me and saw me doing. Then the God of peace will be with you.
I have poured out my concerns to God, telling Him exactly what I need and desire, and thanking Him for the ways He has already provided for me. I have listened for His voice and done all I know to do to obey Him. I have fixed my thoughts (most of the time) on things that are ‘truehonorablerightpurelovelyadmirableexcellentworthyofpraise’, telling the fearful and anxious voices in my head to shut up and go away. Why should I be surprised that it’s actually working?
I have decided to believe. If God is God, then I must serve Him. If someone or something else is god, then I should serve that person or thing. I refuse to be wishy-washy in my faith, flopping from side to side, saying I trust God but running around in anxious circles, throwing my hands up in the air and crying. If I believe God is God, and I believe He speaks to me in a still, small voice of love, then I must faithfully obey His commands. Anything else is not faith.
I believe God has spoken to me clearly the same message for the last several months: be still, stop struggling, and wait for the redemption of the Lord. I believe that He has said what He has for me will come to me in His timing, in His way, without all my frantic worrying.
I have spent a lot of time with the Lord, fasting and praying, laying out my concerns and requests before Him, asking for direction and for Him to open the door before me and to keep me from making a foolish decision out of fear or desperation. If you really think about it, isn’t that what you expect a minister of the gospel to do when in this type of situation?
As long as I continue in the current course of action – waiting, praying, seeking God, and trusting Him to provide for me, I have an unexplainable peace. When I get my eyes off Jesus and look at the waves threatening to swallow me up, I do face an overwhelming feeling that disaster is upon me. In those moments, I stop and evaluate my thoughts. I get my eyes back on Jesus and the calm returns. As I gaze into His eyes, I feel the most comforting sense of love, peace, and comfort.
I admit that one of my fears is that what I think is God’s voice is merely my own. As I consider that fear, I’ve come to a conclusion: If I’m wrong, then I’ll deal with the consequences of my decision. If I’m wrong, then it is ME who has failed to correctly discern God’s voice. I will not blame God or love and trust Him less. I will deal with my own lack of discernment and pick up the pieces.
One of the things I think God is teaching me through this time of waiting is how to stand firm in my beliefs. God hears my prayers. He is teaching me something through this trial. He is in control. What have I to fear? The only thing I can think of right now is that I fear looking like the older lady who just walked in wearing bright green, skinny jeans, a skin-tight black and white striped shirt, and purple high-tops. Oh my…Read More