If Only...

“The Lord is near to the brokenhearted and saves the crushed in spirit.” Psalm 34:18

Near the end of my pregnancy, the specialist who did my weekly sonograms at the hospital performed a 3D ultrasound for me. I didn’t tell her why I asked for one, but I desperately wanted to see Alisa’s face to search for any features of Down syndrome. I needed to see just to prepare myself for her birth. One of the nurses I had become especially close to wanted to be a part of the sonogram, so she walked down the hall with me early that morning. While we were waiting for the machine to warm up, the nurse, who had just looked at my chart, commented that she’d seen Alisa had a cyst on her brain earlier in gestation. She’d never heard of that type of cyst and asked what it meant. The fact that Alisa had anything abnormal in her brain at any point was news to me.

I had heard of these cysts before, mostly that they are fairly common and usually go away mid-pregnancy, but no one ever mentioned to me that Alisa had any of these cysts on her brain. I had gone our entire pregnancy holding my breath during every sonogram, praying and hoping for Alisa’s brain to be untouched, and now I was learning that I’d missed something. That familiar lump of grief and fear took its place on my chest and was further confirmation that something was likely wrong with our baby girl.

When my OB came by later during her morning rounds, I asked her about the cyst. She assured me that this type of cyst is usually benign. “Good,” I exhaled, my voice still shaky. “I need to know that her brain is OK.” I still felt great uncertainty about the whole thing.

She looked at me with compassion as she stated the obvious. “Well, Kara, you do know that with the trisomy 21, her brain will likely be touched in some way…”

“Yes, yes, I know,” I quickly replied, trying to be brave. I knew, but I still desperately hoped it wouldn’t be the case. “I just need to know that there aren’t still cysts on her brain or anything extra.” 

Anything extra…you know, in addition to the Down syndrome.

I am not too far removed from being that heartbroken and scared mommy in the hospital. Because we received the news of Alisa’s diagnosis prenatally, we did much of our grieving during pregnancy. The day she was born was one of the most joy-filled of my life, right there with my wedding day and her sister’s day of birth. We now have a beautiful newborn baby girl who brings great satisfaction and deep joy to our home. I learned early in my pregnancy that you can have Down syndrome and still be a healthy person (myth buster!), and we are grateful she is very healthy. But the truth of the matter still remains that trisomy 21 touches her body much more deeply than the physical features you see when you meet her.

The reality is that my daughter will, undoubtedly, have varying levels of intellectual, cognitive, emotional, and developmental impairment. Just as my OB lovingly reminded me in the hospital that day, there are complications to Alisa’s body that are a direct result of trisomy 21. We can describe her with all of the politically correct terms, but at the end of the day, Alisa will have disadvantages and differences from others because of her genetic makeup that will make life more challenging for her. 

Because of that reality, this world is currently at war trying to classify people like Alisa. Are they worthy of life, or is the current genocide in the womb justified? Once they are here, are they more special than others, less special, or just the same? Do we treat them like everyone else or do we acknowledge and accommodate their needs as they arise? Sometimes I feel like I have to perform verbal gymnastics when talking with others about my daughter so as not to offend anyone or draw out unsolicited advice.

And this is where you enter into the ever so complicated world of processing our daughter’s diagnosis while also rejoicing in her life. We acknowledge our unquestioning love for her, even in our grief. Some days, it is a dizzying process, for how do I grieve something that is intricately tied to who my child is, woven into the very fabric of her DNA? As I wrote about previously, I delight in the knowledge that Alisa is fearfully and wonderfully made in the image of God, and our family celebrates the gift of her life. Yet honestly, if I could take away the extra chromosome from her, I would. A fellow mom whose child has Down syndrome said it so well: “If there was a way to remove the Down syndrome but still keep my child as who she is, I would.” I feel the same.

If I could go back to the day God divided up Alisa’s chromosomes and stay His hand from weaving that 47th chromosome into her DNA, I would do it. If I could take upon my body every single abnormality, delay, or struggle she has or will have because of her extra chromosome, I would welcome the burden for the sake of my daughter. Some parents of children with special needs who are 5 or 10 years down the road from us have commented, “I wouldn’t change a thing.” I think it is wonderful that they say that, and I believe them. But I must tell you, I am also not there yet; I’m not sure if I will ever be there. And you know what? That’s okay. Being a genuine follower of Christ has not taken away my human emotions, and I feel them fully as I experience this new world as Alisa’s mom. I rejoice in my daughter, but I also still grieve for my daughter at times.

However,

this place of brokenness is actually where the gospel of Jesus Christ most powerfully speaks life into our reality. He is Jesus, Immanuel, “God with Us,” and He stepped into our world and took on our brokenness, that we might be made whole in Him (Matt. 1:23). I do not have to act tough for those I encounter; I can be honest in my heartache. I do not have to reframe my life to sound better than yours or to clean up the mess around me; I can be transparent about the difficulties and struggles. Why? Because Jesus Christ speaks meaning into my heartache. Jesus gives purpose to this mess. He doesn’t deliver us from earthly suffering, and He never promised He would. He does, however, redeem our suffering. 

But then come some of those “why” questions. Why did God not just wave His hand and make everything new again? Why did He not eradicate this broken world of sin once and for all and forego this great gospel-mission of reaching everyone through personal choice to follow Him? Ah, but you see, therein lies the clue: choice. From the beginning of creation, God has given us the freedom of choice. Adam and Eve faced the very first dilemma - choose the forbidden fruit or choose obedience to God. And ever since then, creation has been amassed with human choices; on the whole, we continue to choose rejection of God. But God, in His relentless love of humanity, pursued us to the cross and still today calls for any who would follow Him to come. He will redeem you from your sins, and He will redeem your suffering. He is near to the brokenhearted, and He meets us in our deepest grief. 

If you were to sit down and have a cup of coffee with me this morning, I would tell you that I am a heartbroken, joy-filled mom. There are times that my mind has wondered to the place of “if only”…if only I could take it all away for my daughter. I have found this human honesty in scripture, too. The Apostle Paul tells of how he begged God to release him from his own suffering (2 Cor. 12:1-9). The prophet Jeremiah lamented the suffering of his people (Lamentations). But, like them, I don’t have to stay in that place of grief, because the Lord never fails to meet me in my sadness and to minister His comfort and goodness upon me (Psalm 91). He will not make it all go away, but He will make it all have meaning, and that is something. He offers the same nearness to you, too, if only you would choose Him. Christ redeems our suffering by giving it meaning and by allowing us to know Him more fully through it. In his grief, Jeremiah penned these beautiful words that comfort still today:

"Remember my affliction and my wanderings, the wormwood and the gall! My soul continually remembers it and is bowed down within me. But this I call to mind, and therefore I have hope: The steadfast love of the Lord never ceases; His mercies are new every morning; great is Your faithfulness. 'The Lord is my portion,' says my soul, 'therefore I will hope in Him.'" Lam. 3:19-24

Perhaps our family is at a greater advantage than others in knowing Christ through the broken, wonderful life of Alisa Jane. Perhaps that is why parents who are further down the road from me can say, “I wouldn’t change a thing.” I guess the days and years to come will tell the story. I know , though, that her life has meaning in Christ, just as Kate’s does, just as mine and yours do, and for today, that is enough for me.