Feeling the Difference: Cri du Chat Awareness Day #2

A week ago I would have told you, in full honesty, that we are grieving as we acutely feel the difference of having a child with special needs. Seemingly insignificant interactions and observations increasingly remind us how much slower Eliora’s growth and development is happening than is typical. This has been the expectation ever since we have known of her 5p- diagnosis, but expectations don’t make the reality much easier to swallow.

We sometimes feel a little lonely in our place on the spectrum. Eliora is obviously not typical; things are much more difficult for her to learn, and every single skill takes hours of intentional practice to master. Things like poor muscle tone, which didn’t sound like a huge deal to me when I first read about the 5p- diagnosis, really do make the simplest of tasks like eating or playing or having bowel movements more challenging in our daily life. I can’t relate from experience to a mom whose baby will drink from a bottle without some struggle, even still. On the flip side, many of the 5p- families we are acquainted with or follow online have experienced a greater depth of medical complexities and health struggles. We cannot relate to the frequent ER trips, multiple surgeries, or tube feeding struggles either. This leaves us somewhere in the middle – not a crisis and not as “easy” as it should be (not that parenting is ever easy!). Throw in a global pandemic and we find ourselves wishing even more that there was a handbook tailored to our situation in this moment in time.

I’m reminded that it isn’t supposed to be this way – constipation-prone babies, feeding disorders, hypotonia, and intellectual disability were not part of God’s plan for a perfect world. It is because of sin that we experience these aspects of brokenness – not necessarily our own sin, but as a more generalized judgment on a groaning creation that has rebelled against its Maker. Though we grieve this reality, praise the Lord on high we have a living hope!

Jesus, the Savior of the World, was both God and man. He walked a lonely road that not even his inner circle truly understood. Only the Father fully knew his suffering and aloneness in a world that couldn’t wrap its brain around the one true Messiah. Therefore, I have a Great High Priest who is able to sympathize with my weaknesses (Hebrews 4:15). Jesus sees all, knows all, and intercedes for me in a way no human ever could and reminds me through His Word that He is not at all unfamiliar with pain and suffering. He knows more than I what it means to feel alone in suffering, even to the point of dying on a cross for his people while crying, “Father, why have you forsaken me?” I will never know the depth of agony Jesus endured to purchase my life and my salvation.

Jesus told us that in this world we would have trouble, but to take heart! He has overcome the world (John 16:33). This verse has become much more precious to me since beginning our journey with Eliora. In this life we face real struggles, and some days I feel that in a painful way when I am reminded of certain elements of Eliora’s diagnosis.

It is because of the hope I have in Christ that I can talk about the most difficult aspects of this trial with both genuine sadness and an even deeper joy, knowing that someday Christ will make all things new. One day soon, the redemption Jesus won through the cross will be fully realized in a new Heaven and Earth when He returns. One of many miraculous blessings of that time will be receiving our new bodies, free from the stains of sin and brokenness.

In this current time of already and not yet redemption, the hardest part of Eliora’s story to grapple with has been that most individuals with Cri du Chat Syndrome will have a moderate to profound level of intellectual disability (some will have only mild intellectual disability). When I was alone at the doctor’s office receiving the news a year ago, I saw on the stack of papers from the genetic test results that with Eliora’s larger-than-normal deletion on her chromosome, we should expect severe mental retardation. Reading those words was a crushing and life-altering moment.

While we have yet to see the true extent of Eliora’s abilities and cognition, I am still hit hard with these words at unexpected times. Sometimes when I watch another parent having a conversation with their child or a video of a child demonstrating a milestone or skill, I am tempted to lament the things that may or may not ever be a reality for our Eliora. When I hear someone use the word “retarded,” a rush of emotion wells up inside of me that is grieved by the connotations of something that is a part of her story. She is unthinkably beautiful, and she is slower than average.

Practically, one example of a question we find ourselves asking is whether or not Eliora has the mental capacity to begin more intentional behavioral training. Our parenting class tells us that this can begin at 9 months, but a typical nine-month-old is mobile and at a different level intellectually. We so appreciate the parenting class taught by the Jeff and Jen Wilkins (seriously – chock full of practical wisdom and free during COVID), but we don’t know how much applies to Eliora and when. These are unchartered waters where we can only seek the Lord’s guidance and pray that his wisdom will guide us as we do our best to adapt to the needs of our unique child.

The great antidote where I often land in the midst of these thoughts involves thankfulness. I am first and foremost grateful for the Lord’s mercy and kindness in giving us salvation in Christ, our living hope and only boast. I am so grateful that in the midst of hardship, we receive more blessings than we could ever dream of deserving, all because of grace. So this year for Cri du Chat Awareness Day, I wanted to be honest about the fact that we still struggle. I also want to convey with authenticity that we are grateful for the many things we CAN and do celebrate about our sweet girl. Not the least among these things are some recent strides and blessings:

We are wearing our stripey socks today, one shorter than the other, to represent Ellie's missing DNA on the fifth chromosome.

• We bought a house! Eliora has her very own room for the first time and is adjusting to our new environment in our Pittsburgh home. We praise the Lord for his provision and celebrate that we can offer her a level of consistency that has not been possible up to this point. We are equally grateful for the generosity of Chris’s parents in allowing us to land in their home for nine months while we saved and searched for this ordained place to call our home. Below is a picture of us in our new backyard!

• Since my last update, Eliora has begun army crawling a bit and is undoubtedly building strength through PT and free play. It has been awesome to see her initiate weight bearing on her arms as that is something we have been trying to facilitate for months!

• One time, she imitated Chris in saying “dada!” Her verbal skills are surely lagging behind, but that was a sweet moment of victory we treasure.

• Eliora recently started feeding herself rice rusks, and it is so cute to watch. This is a great stride in fine motor skills.

Since a week ago, grief has waned again and has given way to hopeful anticipation of Eliora’s beautiful life. We are reminded that while it will be different than anticipated in some ways, but it will also be a uniquely lovely testimony to our God who has a special place in His heart and His plans for the vulnerable and the weak among us. Nothing could bring us more joy than to know that as much as we love and adore our little lady, the Lord’s love for her is unimaginably wide and high and deep, and every detail about how He made her is nothing short of wonderful (Psalm 139:14).