After Down Syndrome

  

Everyone has at least one day in their lives that they could call “life changing”. When applied to my life there are a few moments that come to mind; high school graduation, my engagement and subsequent wedding, the night we found out we were expecting our first child, her birth, the day I found out we were expecting again.  I can tell you the month date and year that all of those things occurred, they’re important moments, monumental moments, moments that changed the course of my and then my husband’s life.  One thing that they all have in common is the joy that came with these special moments and the tears shed by me or others that were looking on with love and pride.

But there is another moment, one that will be with me until the end of my days.  It’s a moment that I’m not proud of, a moment full of anger and hate and tears.  Three years ago today, I was blissfully unaware that I was about to add another “life changing” moment to my list.  I had no idea that less than 24 hours from now, I would be given news that would expose my truest of feelings, and leave me shaken, ashamed and confused.

 When I think about it, I don’t really remember much about March 20th, 2012; it wasn’t anymore special to me than any other day.  I couldn’t tell you what I had for breakfast, lunch or dinner.  I couldn’t tell you what I wore, if I was at work or home, if I did anything special with my spouse or daughter.  I’m sure I was happy, or as happy as a pregnant lady chasing a toddler could be.  We had some scary news earlier in the pregnancy, that had seemed to resolve itself, and although I knew the results for our amniocentesis would be in soon, I wasn’t too concerned.

  

And then the next day came.  I remember going to work and having a fairly pleasant day in Triage, I chatted with friends, very few knew that we had an amnio, so it wasn’t on the forefront of my mind.  As I was leaving I checked my voicemail, there was a message from our perinatologist to call him back; our results were in.  So I did just that.  I called him back, and then March 21stwas added to my list of life changing days.  It wasn’t a happy occasion; the tears that were shed were not ones of pride, joy, or love. 

I can sometimes still feel fear and confusion that I felt after hearing the Doctor utter two little words “Down syndrome”.  I can still feel the tears that rushed down, soaking my steering wheel and t-shirt.  I can still picture the confused look on the old man’s face, who tapped on my window to check on me.  I can still hear the three words I shouted in anger at God as I pulled out of the parking lot “I Hate You”.  And I can still hear the thoughts echoing in my head about my unborn son, “I Don’t Want You”. 

As I said, it wasn’t a moment that I remember proudly.  My initial reactions left me feeling guilty and angry at myself.   I went home that night, kissed my sleeping daughter and changed into my pajamas.  My in-laws came over to discuss our results.  I ate cold Ramen noodles.  I had told my mother in law, “I like them cold”, when she urged me to eat them, I didn’t want to tell her that I had no desire to eat anything.  I cried some more and then went to sleep. And then it wasn’t the 21st anymore.

  

Over the following weeks and months I learned as much as I could about life with a child with Down syndrome.   I prayed.  A lot.  I forgave myself.  My love for Gabe grew bigger and bigger, just like my belly, until it felt like my tummy and heart couldn’t expand any further.  Then Gabe came and slipped seamlessly into our lives; Mommy, Daddy, Daughter and Son; our perfect family.   I like to think of the days before Gabe as the days “Before Down Syndrome”.

Those were the days before words like chromosomes, trisomy, Down syndrome, low tone, therapy, advocacy or acceptance were part of my every day vocabulary.  The days before I understood what it meant to use people first language. They were the days before I felt like I understood the meaning of true and unconditional love. The days before I had friends, best friends, that spanned the globe, before I had the confidence to stand up for my children’s needs and before I knew what it meant to take a time line, throw it out the window and be okay with it.  Those were the days before I fell in love with a blue eyed boy, before I knew how wonderful, amazing, challenging and perfect it was to have a child with Down syndrome. 

I wouldn’t give them up for anything, and even though sometimes I miss the simplicity of them, I wouldn’t give up a single day that has came After Down Syndrome either.

   


I Didn’t Want Him

The great thing about thoughts, is that no ones knows you’re having them. The fact that no one knows your thoughts can also leave you in a frightening and lonely place. Especially the thoughts that may shock those around you, the thoughts that leave you feeling guilty, the thoughts that you immediately feel shamed for thinking. Sometimes a situation arises and no matter how hard you try, you can’t prevent these thoughts from flitting through your brain faster than lightening. I’d like to share with you my scary secret thought, that to this day still haunts me.

It was March 21, 2012. It was rainy and dreary outside, I was alone in my car, pregnant with my second child. I had just found out that we were having a baby boy and I didn’t want him. Please, before you judge me, let me explain….

On February 14th, my husband, and I excitedly waited in a dimly lit room. We were expecting our second child and were eager to see him or her for the first time. A quick swipe of the ultrasound wand revealed a very small black and white wiggling baby. Various measurements were taken, pictures were printed, the technician quietly left the room and the doctor came in. He informed us that there had been some abnormal findings on the ultrasound; he explained that our baby had swelling everywhere. He went on to tell us that the chances of the pregnancy continuing another three weeks was slim, chances were very high that we would lose our baby. Utterly devastated, I clutched the photos and sobbed. We went home to wait.

God knew my heart and He knew my needs before I ever did. He placed a man in my life that did not have Thomas like faith; my husband. Josh’s faith swelled; he wrote out numerous healing scriptures for me to speak over the baby, fasted until our follow up ultrasound twenty one days later. We surrounded ourselves with Godly people and stood on faith that God would see us through. Our follow up appointment proved the power of prayer. Our baby was growing and thriving, showing no evidence of prior anomalies. We chose to move forward with an amniocentesis to confirm that there were no issues.

On March 21, 2012 I received a call from our doctor to call him back when I left work. Feeling confident that our prayers had been answered, I alerted josh that our results were in. I was confident that I could handle the good news on my own and quickly disconnected. I cheerfully answered and listed to what the perinatologist had to say; “The fetus has a chromosomal abnormality”. I couldn’t breathe, my heart pounded in my ears and my smile vanished. Sobs and tears consumed me, the word “abnormal” echoed through my head attempting to drown out everything else he was saying. “There is a third copy of the 21st chromosome, the fetus has Down syndrome. You will need to come in ASAP to make plans.” I murmured my goodbyes and hung up.

I was shattered; I clung to the steering wheel and sobbed uncontrollably. I thought back through the conversation; I knew that there had been a mistake. He had called the wrong patient, or had the wrong labs. Somehow, I managed to ask him if I was having a boy or a girl, “I believe it’s a male” was the detached response. It, fetus, abnormal, Down syndrome, I couldn’t understand how this was happening. We had prayed, fasted, believed; we had bigger than a mustard seed faith! I could barely bring myself to call Josh, I felt I failed him and my family. Guilt and anger overwhelmed me. In that moment, in the car by myself, I didn’t love the baby that was growing inside my belly, fighting so hard to be in our lives.

I slammed the car in reverse and backed out. I glared through my windshield, looking up into the grey sky, I imagined God looking back at me. “I cannot believe that you would do this to us. You have NO idea what you’re doing! You tell us to trust you, to have faith, and then you go and do something like this, you missed your chance God, how could you?” The blame wasn’t mine, this was Gods fault, and I was furious with Him. I’d love to say that the scripture “your sorrows may last for a night, but your joy comes in the morning”, was true for me, but it wasn’t. I was barely able look at Josh or our daughter the next day, feeling like somehow I hadn’t given them the son or brother I thought they needed. I broke down every time I felt the baby stretch reminding me that every single cell of his was “abnormal”. Every kick brought with it the fear of the unknown and guilt over the detachment I felt.

(Concluded in “I Couldn’t Fathom Losing Him”)

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I Couldn’t Fathom Losing Him

Continued from: I Didn’t Want Him

We shared the news with family and began moving forward; however my anger at God had not dissipated and I reminded Him often. Just over six month pregnant, I was taking a moment to mentally glare and grumble at God. I was suddenly so overwhelmed with such a fierce love, a severe longing and desire to have my baby that it brought me to my knees, sobbing. I wasn’t frightened by his movement anymore; I was terrified of never feeling it again. I wasn’t overwhelmed at the possibility of difficulties in the future but overcome with the absolute want and need to have a future with this baby. For Abi to hold her brother, for josh to meet his son, to hold him in his arms and tuck my nose into his neck and breathe in the scent that would be so uniquely Gabe. I WANTED my baby. I knelt begging for forgiveness and praying for my son. I was no longer angry, but I still wanted to understand why? The answer that I FELT was clear, Lazarus. I found a bible and began to read.

Lazarus and his two sisters; Mary and Martha were beloved friends of Jesus and he often stayed with the family when his travels brought him through Bethany. Martha often served as hostess and Mary spent time listening and learning from Jesus. Mary even acted with extravagant abandon and devotion, when she used perfume, costing a year’s worth of wages, to wash Jesus’ feet, unknowingly anointing and preparing him for his upcoming burial.

In John chapter 11 we discover that Lazarus has fallen ill, his condition is so concerning that the sisters send word, imploring Jesus to return and heal their brother. Despite the fact that Jesus loved the family very much, he remained where he was for two additional days stating in verse 4 that “Lazarus’s sickness will not end in death, no, it happened for the glory of God so that the Son of God will receive glory from this”.

When Jesus decided the time was right for him to return to Bethany, the disciples attempted to dissuade him, expressing their concern over the risk that he was taking traveling through the area where so many were scheming for his destruction. Jesus was unmoved and shared with them in verse 11 “Our friend Lazarus has fallen asleep, but now I will go and wake him up” seeing the disciples confusion he continued “Lazarus is dead. And for your sakes I am glad I wasn’t there, for now you will really believe. Come let’s go see him.” When Jesus arrived in Bethany he was told that Lazarus had been in the grave for four days; by all appearances he was too late.

I stopped and reread; Jesus loved this family, but didn’t go to them, he let Lazarus die. I didn’t understand, Jesus had SAID that his sickness wouldn’t end in death. I could understand why leaving the work God had given him might not have been possible, but I couldn’t understand why he couldn’t have healed Lazarus anyway. In Matthew chapter 8 a centurion came to Jesus requesting he heal his servant, who was in bed at home. He knew that Jesus had the authority to just speak and it would be done. If Jesus did it for the centurion’s servant why didn’t He do it for Lazarus?

I kept reading; understandably Mary and Martha were devastated. Not only had they lost their brother, but I imagine that they may have felt a loss of hope. If they believed that their brother would not perish due to the awesome authority of Jesus, it must have come as an even bigger shock when he did succumb to his illness. Mary, Martha, their family and the community were grieving the loss of their loved one when Jesus arrived. Martha and Mary, each in turn, went to him saying “Lord, if only you had been here, my brother would not have died”. To them, the chance for a miracle had passed away when their brother breathed his last breath. It must have been so difficult for them to understand, why a man who had performed countless miracles and had the authority to make the lame walk, give sight to the blind and a voice to the mute, let someone he loved perish.

Jesus knew Mary and Martha’s hearts; he knew that they believed the time had passed to heal Lazarus. Mary, Martha and the entire community stood wailing and grieving over the loss of their loved one. As Jesus stood witnessing this overwhelming grief, he was deeply moved and became very troubled in his spirit. John 11:33 describes his feelings as “a deep anger welled up within him, and he was deeply troubled”. I couldn’t understand why Jesus could be angry with Mary and Martha, he was the one who let Lazarus die. I am sure that he felt some frustration over the disbelief that he was witnessing in Mary and Martha, but maybe His feelings weren’t directed only towards those that were present. I believe that it was toward death itself; the pain and sorrow that had to be caused to ultimately bring glory to God.

Jesus was so troubled within his spirit over the situation that Verse 35 says that He wept. Jesus wasn’t weeping over the death of Lazarus, he KNEW that Lazarus had to die and be raised from the dead. He was weeping with and for those that he loved. Understanding the way Jesus felt standing outside Lazarus’s tomb, I was able to understand the grief that He must have felt when we received Gabe’s diagnosis; the sorrow that he had to have had over my devastation and anger when my prayer hadn’t been answered. How wrong I had been that day when I turned my eyes towards Heaven imagining a heartless and detached God, His heart had to be aching as much or more than mine at my sorrow and despair. It didn’t bring God any joy to not send the answer we were expecting.

Verse 39 finds Jesus going to the tomb and demanding that the stone be rolled away. His request met resistance from a concerned Martha, who still didn’t understand what was about to occur. She responded “Lord, he has been dead for four days. The smell will be terrible”. Jesus must have been further troubled knowing Martha was almost unknowingly refusing a miracle because she was concerned about the smell. Jesus could only respond to Martha by saying “didn’t I tell you that you would see God’s glory if you believed”. In verse 41 Jesus turned his face towards heaven and said “Father, thank you for hearing me. You always hear me, but I said it out loud for the sake of all these people standing here, so that they will believe you sent me.” Verse 43 then Jesus shouted, “Lazarus, come out”.

Lazarus was dead; his heart had stopped pumping blood to his organs causing them to shut down and stop working all together, the blood pooled in his body becoming thick and stagnant. He was not breathing; no oxygen was being shuttled to and from the lungs. Lazarus had been taken and prepared according to Jewish customs. His body cold and firm, wrapped from head to toe in burial cloth, laid inside a cave, covered with a large rock and left to decay for four days. Jesus called out to him, called him to draw breath and life back into body, for his heart to beat again; Lazarus stood and exited the tomb.

I don’t know why Gabe has Down syndrome; I don’t know why God chose this path for my family. I don’t know why bad things happen or why sometimes God doesn’t heed our call for help or rapidly answer our prayers. But I do that know Lazarus died. Jesus didn’t heal him from his illness; he grieved with and for those he loved. I also know that Jesus made an opportunity by not healing Lazarus; He had an opportunity to bring Glory to God.

Gabe is perfect; he is smart, strong and so sweet. He is joyous, inquisitive and gentle. He was born without complication and has had none of the medical issues and conditions that are so common for individuals with Down syndrome. He is growing and meeting his milestones. God didn’t miss an opportunity, he made one. When I look at Gabe I am reminded of Lazarus, I am reminded each day that of the opportunity that God has given us; one that has strengthened our faith, taught us unconditional love, and has brought Him Glory.

…I don’t know what your thoughts are, that’s a blessing and a curse. Maybe you’re in a similar situation, maybe you’re facing a prenatal or birth diagnosis of Down syndrome, or any situation that you just can’t seem to understand. You may not be the only one thinking the things your thinking, no matter how bad they may sound in your head. You know my thoughts now, and I hope you know that you’re not alone…

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