Help that Hurts

We have all had the experience of seeing a loved one or acquaintance in emotional pain. I believe we all know the feeling of wishing we could find the right words to say to ease their suffering. I believe many of us have felt the discomfort of encountering another’s grief up close, wanting to find some way to get relief from the awkwardness of the situation. I have been on this end of relationship many times, and I know I have been too quick to share words that seemed to only hit the ground, though my intentions were good. However, through my experiences since Benjamin’s birth of being the one in pain, I believe I have learned a bit more about what truly helps as opposed to “help that hurts.”

As I have written elsewhere, Shawn and I have been the recipients of incredible support and encouragement since we began our journey of parenting a child with special needs. We have been truly blessed through the genuine love and investment by others in our lives, and we will always be thankful. However, I now want to focus on the “help” that hasn’t been so helpful. My motive in writing this piece is not to point the finger or be critical of others, but instead to create awareness on a very sensitive issue. Where to begin….

I have realized more and more over these last three years that many people tend to hold a “rose-colored glasses” view of having a child with Down syndrome. Shawn and I have cringed inside time and time again as friends or even strangers have made comments such as, “God only gives these children to special people.” “Oh, they’re all such little angels.” “God knew you could handle it.” Do I believe that Benjamin is a gift? Absolutely—just as I believe that every child born is a gift, regardless of the circumstances. I highly value human life, and I cherish my son. However, I do not feel that children with disabilities are only given to special people who “can handle it.” All around the world, children with Down syndrome and other special needs are abandoned to orphanages and institutions. Their parents didn’t feel special and instead rejected the very life they had created. I have heard that in our nation statistically 90% or more of women who receive a pre-natal diagnosis of Down syndrome choose to abort! There is no rosy notion here but a devastating reality.

As to the sentiment that all people with Down syndrome are like angels, such comments carry a bit of a sting as well. Benjamin is a delightful little boy, and I love watching his personality emerge. However, his love or happiness as an individual is not dependent on the fact that he carries an extra chromosome. He will be shaped by relationships and life experiences just like we all are, and he will be his own person with good days and bad days, joys and sorrows. We once had a friend tell us about a grown man who had Down syndrome that she had encountered at a restaurant. He was an outgoing individual, making conversation with many people. She told us, “I thought, ‘That’s Benjamin!” I knew she meant well, but it was upsetting that my son’s personhood was being directly linked to his disability, even if it was in a flattering way. We intend to raise him to value people and to walk in love, but we will not assume that his chromosomal condition will ensure his emotional disposition!

When we’ve been told that God gave us Benjamin because He knew we could handle it, I want to laugh. We are not somehow immune to pain and disappointment, and it has only been His grace and His strength that have enabled us to walk through both. The underlying message I have felt from such comments has been, “I’m glad it’s you and not me. God knows I couldn’t handle it!” Now I realize that this attitude is not true of everyone, but I hope that I’m making the clear point that having a child with special needs should not be romanticized.

Another way we have experienced “help that hurts” has been the sense that others are reluctant to acknowledge our pain, but instead are quick to give pat answers. Sometimes we have felt that our pain is not acceptable to others; maybe it makes them uncomfortable, so they give us cheery responses that only seem to undermine what we are feeling. While the intentions may be good the effects are disheartening. One example has been the grief we have experienced over Benjamin’s developmental delays. Many times I have opened my heart to another in this matter, only to receive prompt replies such as, “But he’s doing so good!” “Oh, well he’ll get there!” “Yeah, but he’s so cute!” I’ve even heard such things as, “When he does start (fill in the blank), then you’ll be sorry.” I know that my son is doing well; no one is prouder of him than his dad and me! I know that “he’ll get there,” but it doesn’t erase the pain that he’s not “there” yet. I think he’s the cutest little boy in the world, but that doesn’t diminish my disappointments over his challenges. I have NEVER been sorry when Benjamin has reached a new milestone. Each one is an occasion for much celebration and thanksgiving. Few people truly grasp the amount of work, tears, frustration and prayer that have been invested into each one.

As I have experienced misdirected “help” over these past few years, I have realized more and more how many times I have been guilty of doing the same. My hope and prayer is that my experiences are teaching me to be more compassionate and sensitive when I encounter pain in others. I have learned that silence can sometimes be the greatest help. Those that have been willing to simply listen to me share the pain of my heart, without trying to “fix” me, have been the most comforting of all. There are often no “right words to say” when someone is hurting. Listen to me, cry with me, offer a hug, pray with me, and trust Jesus to heal my heart. He is the Great Physician. His words are the words that bring life and healing. Sometimes He may give you words to say, but be sensitive to His leading in this area. As I’ve written previously, we had two friends come to us with the gentle exhortation to set our hearts before Jesus to receive healing. They didn’t speak many words, only the words they felt God had given them to say. I also know that they prayed for us before ever releasing those words to us. As we took the advice to heart, we received a deeper measure of healing than a multitude of well-intentioned words could have ever offered to us. I think we should all seek to follow the wisdom of James 1:19 to “be quick to listen, (and) slow to speak…” This will truly help!

 

All I've Known is Holland

On July 2, 2012 I stood in our bathroom at 5:00 a.m. with heart pounding as I waited for the results to read on the pregnancy test strip. My heart nearly pounded out of my chest a moment later when the positive sign was revealed! In a state of shock I went and woke up Shawn, who was too groggy at first for the information to register. When he was able to take in what I was saying, he too was shocked and thrilled. After a year and a half of waiting, it felt surreal. We really are going to have another baby!

After rejoicing with me, Shawn drifted back to sleep, but I knew I would not be able to. Instead I went out to the living room to worship, pray, and reflect on this sudden change in our lives. I had known disappointment after disappointment while trying to conceive a second child. The desire had become so intense, it was beginning to consume me. In May the Lord gently put His finger in that very vulnerable place and asked me to lay my desire on the altar. The desire to have children is a good thing in and of itself, but I was so focused on my longing that it was distracting me from my walk with God. He desires that there be no other loves before Him because He created us for relationship with Himself, and He knows that no other love can fully satisfy our hearts. So, in His love He asked me to surrender my desire for a baby to Him, stop trying to make something happen, and just focus on knowing Him more. With a trembling heart I said “yes,” not knowing what all my yes would require but knowing that I want to live my life in the center of His will. The “yes” had to be reaffirmed every time the longing arose and sought to overtake my emotions, often multiple times a day. It was both a painful and liberating process, but in the midst of the uncertainty and tears of surrender, a new peace descended on my heart. My prayer of “Lord, open my womb,” had become “Lord, may Your will be done.”

Considering this recent journey He had taken me on, it was not on my screen that I would be getting pregnant any time soon. So when my period was late in coming and I was noticing some other unusual symptoms, I tried to not get my hopes up that this was a sign of pregnancy and took the test to more just rule out the possibility. I was shocked that so soon after I surrendered the desires of my heart to Jesus, He granted me those very desires. I feel like I am living in Psalm 37:4, “Delight yourself also in the Lord, and He shall give you the desires of your heart,” (NKJV).   

As I write this I am entering the 10th week of my pregnancy, and already this one feels different. I am more tired this time, which stands to reason as I did not have a small child to care for this first time around. The queasiness in 24/7 instead of off and on. My “baby bump” is emerging much more rapidly this time, and I’ve only gained a pound so far! There isn’t the clear sense of whether or not we’re having a boy or a girl like we had with Benjamin. Also this one just feels different; I don’t have language to describe how or why. The reality that I may finally be taking a trip to “Italy” is growing inside me more and more. Yet all I’ve known is “Holland.”

In some ways I feel like I will have to learn to be a parent all over again. The slower pace of Holland is what I’m familiar with. Every stage of Benjamin’s development has been so extended, and every new milestone has required so much work. Currently, he is 3 years and 2 months old and is still operating developmentally like a 10-12 month old. Picturing the much faster pace of Italy is both thrilling and a bit intimidating. I can only imagine Shawn’s and my wonder as our next baby seemingly effortlessly reaches milestones in his or her first year that Benjamin did not reach until his second or third year after months and months of intervention. I can picture joy in watching our next child’s development speed by as well as grief as we remember just how hard Benjamin had to work for the same things.

Though I will be required to have another c-section, my heart is thrilled at the prospect of being able to see my baby right after delivery and being able to hold and nurse my child within a few hours. I am in awe of the thought of being able to bring a healthy baby home at the time of my release from the hospital. I know that this experience is the norm, but for so long it has felt like a distant dream! I also realize that I don’t have a clear idea of what the first few months with a new born are really like. Benjamin was so weak from the holes in his heart that he slept away the majority of his first two months, one of those months being in the NICU. During his first month home he rarely woke me up to feed him; I had to wake him up to eat! While I know that every child is different and brings their own unique experience, I have a feeling that the differences for us will be even more keenly felt.

The arrival of our next child will definitely be a new adventure and one that I welcome whole-heartedly, with all the ups and downs that may accompany the journey! I am so happy to have another child to love, and I am so excited that Benjamin will have a sibling to grow up with. I look forward to watching their relationship unfold. I am eagerly anticipating Italy, and I will continue to cherish Holland!