“Today is the last day before we know for sure if our son has Down Syndrome.”
This was the opening line of my journal entry on 9/20/13, one day before we would hear definitive test results from the doctor. This was the journal entry where I was going to pour my heart out about all that God had done in the previous nine days of waiting, all that He had done in my heart, and in the heart of my husband, Clive. I intentionally did not journal during those ten days, because I wanted to be focused on intimacy with God alone. Not with people. Not with processing through writing. I had begged God to let those ten days be a time of true and raw emotion. I wanted to experience any grief, any joy, any pain. God answered this prayer and allowed me to feel emotion in ways that would leave me feeling exposed and protected all at the same time. I knew I needed this. God knew I needed this. He had proven Himself to be infinitely more gentle and tender than I could have ever imagined prior to walking this journey of Russell. God showed me secret treasures about Himself that I had not yet experienced in my walk with Him. He showed me that there is no Scripture, no promise, no miracle that is unattainable for me as His child. God, in His great love and for His glory, started preparing our hearts for the arrival of our fourth son, Russell, long before I was even pregnant with him.
Back in the summer of 2012, I had read a post that would change my life and my heart forever. http://www.nogreaterjoymom.com/2012/02/if-not-usthen-who/. This is the post that God used to open my eyes. And the scales fell off – hard. And so began my unexpected heart’s journey to orphans with special needs, specifically those who have Down Syndrome. It was also the beginning of my journey to becoming a crier. Well, ok…a weeper. I was wrecked for good after reading that gut-wrenching post. I journaled the same day that I read it on February 16, 2012. “All we can do is ask God to help us know what to do and then be obedient to that call, whatever it is. I cannot imagine adopting a child with special needs that might live with us into adulthood. I can’t even wrap my brain around how our lives would change. But I also am not guaranteed tomorrow. I know I need to live one day at a time, being obedient to His call, one day at a time, and believe that He will give us the strength to handle whatever He calls us to. I know that I don’t want to live a comfortable life just for ourselves and our family. I want so much more than that. I would have never ever ever thought I would even be praying about adopting a special needs child. And it’s weird to even write about it because we are nowhere near that, but we at least need to pray. In the past I would literally not give it a second thought… ‘Those people are amazing to do that. That takes a special person, a gift.’ It takes Jesus. And I can’t ignore that.”
That summer, God continued to pummel (destroy, really) my heart for children with Down Syndrome. Clive and I saw children and adults with Down Syndrome everywhere in America that summer. And I mean EVERYWHERE. Water parks, baseball games, Sunday School, concerts. It was almost becoming comical. I journaled on June 11, 2012. “So, it’s been a little weird…everything I have heard, seen, and come across. Maybe God is just softening our hearts to Down Syndrome and special needs… who knows? God has changed my heart. He has taken away so much of the fear. And I no longer want to say, ‘I could never adopt a special needs child.’ I now want to say, ‘Lord, we want whatever you have for our family, and we trust that you will teach us, guide us, and take care of us.’” Little did we know what God was up to and how much He was going to enrich our lives.
In 2012, during my pregnancy with Russell, God started giving me glimpses and stirrings of what He might be up to, what He might be preparing our hearts for. One of the greatest miracles was that when I was just six weeks pregnant with Russell, my husband, Clive spoke in high school chapel and publicly surrendered his heart about special needs adoption to God. He said, “If God calls me to adopt a child with Down Syndrome, I am going to follow and obey Him.” And friends, let me tell you, this was a HUGE miracle. But neither of us would have imagined that, inside of me, God was already growing our own precious son with Down Syndrome.
On April 16, 2013, I wrote, “This past Sunday, my friend said that she wanted to remind me that even though this is a fourth boy, this a NEW season, and that this boy is so special. It brought tears to my eyes when she prayed for me. I am so blessed to have a friend like her. It still freaks me out a little bit though, the urgency with which she has been praying for me and this baby, and the ‘new’ thing….just still wondering about Down Syndrome.” That same friend sent me this email later. “Also, when I was praying for you, your new baby boy, and your whole family, the same Bible verses kept coming to my heart. Isaiah 43:18-19 “Forget the former things; do not dwell on the past. See, I am doing a new thing! Now it springs up; do you not perceive it? I am making a way in the wilderness and streams in the wasteland.
On April 18, 2013, I journaled: “Clive and I keep talking about how we can’t help but wonder about this child having Down Syndrome with all that God has done, the prayers, etc. I am even hesitant to journal about it, because I don’t want to imagine what God is up to. His ways are so far above mine. But I just know that if this baby is healthy or not, it feels like God is preparing us….for what, I don’t know. Again, it’s hard for me to write about. I have chills as I write it. I told Clive I don’t EXPECT our child to have Down Syndrome, but it’s more that it wouldn’t come as a shock if he did. And I will be a little surprised if he doesn’t? I know that sounds crazy. I am just amazed at the ways that God has shown us His love for us this year. He keeps blowing me away and I am so thankful it never gets old to Him or He doesn’t think that I should just get it by now. His love makes me hunger for more, and His presence makes me long for Him more. His answers to prayer and the way He provides and takes care of me, makes me continue to trust Him more.” On May 1st, 2013, I wrote, “Didn’t know what to expect on the ultrasound but everything was normal. Both of us felt a little bit surprised. With all God has done, we really don’t know if this baby would be completely healthy on ultrasound. But praise God, he is. I am on track…baby measuring 21 weeks. DS is only diagnosed by ultrasound in 50% of the cases. Baby’s nose couldn’t be seen because he was face down.” I noted the fact that his nose couldn’t be seen because I knew that the baby missing the nasal bridge bone could be a sign of Down Syndrome.
Prior to Russell’s birth, we had two possible names. One was for our son if he didn’t have Down Syndrome. My husband picked that name, and it is the name he ended up with -Russell. The other name was the name we would give him if he had Down Syndrome. He was born on September 5, 2013. You might have heard my screams of pain all the way in America when he was coming. The symbolism of the brief (total labor only 5 hours), intense pain, followed by the sheer joy and contentment is not lost on me. It mirrors what I have experienced in my journey of Russell after he was born too. When Russell came into the world, he did not look like he had Down Syndrome. I looked at Clive in the recovery room and said, “He doesn’t have Down Syndrome.” Clive said, “Oh Fred” (that’s my nickname :)) and smiled at me, like he was saying, “Of course he doesn’t.” I called my mom, and she said, “Hey! He doesn’t have Down Syndrome!” I posted pictures and my sister commented on one of the photos, “Ask me about this picture.” That one picture had made her wonder about Down Syndrome. None of the other ones did. I asked three doctors in the next couple of days if they were sure he didn’t have Down Syndrome. Of course they would look at me curiously when I asked this question. They would all do a quick top-to toe scan with their eyes, look at the palms of his hands, look at his eyes and ears, and confidently assure me that he did not have Down Syndrome. So, after 24 hours of waiting to decide on his name, we named him Russell. Because our son did not have Down Syndrome.
And I felt…..I wasn’t sure what I felt. Surprised? Not totally. But partially. Relieved? I think so. Still wondering what God had been doing in our hearts over these last two years. Then we took our son home. Our son without Down Syndrome. And it really started to sink in. He doesn’t have Down Syndrome. And I felt it for real now. Relief and thankfulness. We were praising God for our healthy fourth son. And praising Him that He had another plan in mind that He was preparing us for. And I know God allowed me those days with our son without Down Syndrome. So I could know that deep down in my heart, in my humanness, I did not want our son to have Down Syndrome. And He allowed those 10 days of waiting for Russell’s test results, so I could wrestle with my emotions and declare that we trusted God, that we were willing to accept whatever His PERFECT plan was for our son and our whole family. And then after finding out that he did in fact have Down Syndrome, to experience the grief. And be cradled in His comfort and embrace. And feel pure joy. Joy that comes through an intimacy with God that permeates and covers all circumstances. Joy that comes from knowing that He speaks. Joy that comes from being real. Joy that comes from holding your perfectly created treasure, your son, in your arms. Joy that comes in the mourning. Joy that comes from knowing He had prepared our hearts.
After we took him home, there was still a gnawing in our hearts. He didn’t latch on for breastfeeding well. He had extremely low muscle tone. He never cried (after having three other children, I knew that was out of the ordinary!) And the more he was opening his eyes, the more we were noticing the almond shape that was just a little more upturned than his Asian-American brothers. One day, I was holding him on my lap and looking up symptoms of Down Syndrome. While reading through them, I didn’t feel overly concerned. It still sounded like he might NOT have it. Then I got to the last sign. A sandal gap. I had never heard of it. So, I looked it up. A larger than normal gap between the first and second toes. I unsnapped his sleeper and held his feet up. And my world stopped. He had it. On both feet. Our boys were running around after showers, and I called to Clive over the mayhem to come and look. I showed him and he said, “Whoa.” Oh. My. Word. My son has Down Syndrome. Oh my word. This IS what God was preparing us for. He WAS speaking to us! It felt surreal.
But there was still the possibility that he might not have it. We took him to the doctor and asked him to do the blood test. He again insisted that he didn’t have it, but agreed to do the test. During the waiting period, I couldn’t left myself truly grieve and prepare, because there was the possibility he didn’t have it. And I couldn’t let myself fully worship God the way my heart was longing to, because I didn’t know for sure that this was His unfolding plan. Ten days after Russell was born we headed to the hospital for the test results. We had prayed together and read Scripture together before leaving the house. We were nervous. But yet, we also were about 95% sure. I cried the whole way to the hospital. This was our last day to hold Russell as our son without Down Syndrome. I didn’t want to step over the fragile boundary of time into knowing our Russell with Down Syndrome. The doctor confirmed our suspicions, but I don’t think I needed him to. I cried the whole way home from the hospital too. I remembered how when I was pregnant I had told Clive that if we found out our son had Down Syndrome, my awe of God and all that He had done for us would overshadow any other emotion I would have. And that was 100% true as we drove home and has been true ever since. Clive felt the same way too. God had given me this verse on September 16th while we waited for Russell’s test results. “Give thanks to the Lord, call on His Name; make known among the nations what He has done. Sing to Him, sing praise to Him, tell of all His wonderful acts. Glory in His Name; let the hearts of those who seek the Lord rejoice. Look to the Lord and His strength; seek His face always. Remember the works He has done, His miracles…” I Chronicles 16:8-12. I knew that this verse was going to be our story and I couldn’t wait to make His Name known.
He was no less perfect with Down Syndrome. He was even more breathtaking actually. And our love for him felt tender and fierce at the same time. Sometimes, after just finding out he had Down Syndrome, when holding him and staring at his beautiful, perfect face, I would feel like I was under water. Suffocating. Seeing him as my son without Down Syndrome, looking just like our other boys while he was sleeping, but then the weight of the reality would crash over me. I had no context for who Russell with Down Syndrome was going to be. But then he smiled for the first time. And laughed for the first time. And those waves of suffocation turned into breaths of fresh air and rejoicing. We can’t believe he is ours. He brings us pure joy—our whole family. His brothers adore him and he adores them. God adores him. On my balcony reading my Bible one day soon after finding out he had Down Syndrome, I read Isaiah 41:20 “so that people may see and know, may consider and understand, that the hand of the Lord has done this, that the Holy One of Israel has created it.” Another verse He blew me away with was, “See, the former things have taken place, and new things I declare; before they spring into being I announce them to you” Isaiah 42:9. God had prepared our hearts! It seemed too good to be true! And I told Clive that I felt like God’s favorite. I truly did. And I realized that that’s how God WANTS me to feel! You are God’s favorite too you know? Know that whatever He is doing in your life, whatever He is preparing you for–nothing is wasted. None of it. Russell is a constant reminder of God’s goodness, of God’s love, of God’s gentle voice. Russell has changed our lives forever. For the much, much better. Truly, there are no words. There is SO much more to this story, but those stories will have to wait for another time. For now, be encouraged by God’s goodness, His faithfulness, and His promise to speak to us.
Our Facebook post on September 29, 2013 read, “Love, joy, and sorrow meet as we let family and friends know that our son, Russell, was born with Down Syndrome. We are so in love with him and in awe of God, who miraculously, gently, and lovingly prepared our hearts and our family for Russell.”
Isaiah 42:16 “I will lead the blind by ways they have not known, along unfamiliar paths I will guide them; I will turn the darkness into light before them and make the rough places smooth. These are the things I will do; I will not forsake them.”
“Nothing exceeds thy power, nothing is too great for thee to do, nothing too good for thee to give. I ask great things of a great God.” ~The Valley of Vision