A Time to Cherish

I wrote this a week ago...

“One of the best things you can ever do for your son is to have another child.” I heard these words on several occasions from Benjamin’s physical therapist before that happy day in July 2012 when we learned I was finally pregnant for the second time. We had always planned on having more children; having a child with Down syndrome neither discouraged nor motivated our desire. However, I was (and still am) excited about the benefits Benjamin will receive from having a sibling. On the flip side, though, his therapist also told us to expect that new layers of grief would emerge upon the arrival of a “typical” child. Watching our next child naturally develop would cause us to recognize more and more just how hard our son has had to work to meet developmental milestones.

During the months I was pregnant with Joelle, I was intentional to ask the Lord to speak to me about her life. I remember the day He whispered to my heart, “Enjoy her! Enjoy the process of growth. She will be a healing balm.” As we are now quickly approaching the celebration of her first birthday at the end of next month, I am keenly aware of how true all of the dynamics mentioned above have been—benefits, grief, joy and healing.

The healing began early in the morning of February 28, 2013. The evening before, I cuddled Benjamin next to me on the couch as he drifted off to sleep. It was a bittersweet moment as reality hit that this was the last time it would just be Benjamin and Mommy. Starting the next day he would have to share me. I held him close and soaked in the moment.  I could barely sleep that night, due in part to the discomforts of late term pregnancy, but even more so because of the anticipation of knowing we would soon meet our baby girl! (Due to my necessary C-section with Benjamin, I would have been hard-pressed to find a hospital or provider in our area who would allow me to try a vaginal delivery. The C-section was scheduled for one week prior to my due date). When the alarm went off before the crack of dawn, I was eager to change into my comfy fleece pants and pull-over and head for the hospital. My mom, who had arrived the week before to help with the new baby, sleepily saw us out the door. “Dana, you’re glowing!” she exclaimed.

 Shawn and I talked and prayed as we made the drive across town. It was such a new feeling to know we were having our baby today in contrast to the shock of Benjamin’s early delivery nearly four years before. As the surgical team began to prep me for the C-section, I prayed that Jesus would hold me and surround me with His peace, for I clearly remembered the terror of my previous experience. While the spinal was being administered, a calmness rested on my heart, and I knew this time it was going to be so different. Soon my newborn daughter’s shrill, strong cries pierced the air, and I smiled confidently that she would have no difficulty breathing on her own. It was hard to contain my excitement as she was cleaned, weighed and measured. I was going see my baby right away this time! My heart felt like it would burst when Shawn held our swaddled daughter by my head so I could look at her and kiss her face while my C-section was being completed.

Once in my hospital room I had only a short wait before little Joelle was placed in my arms. My mom walked into the room less than a minute later, her face beaming, as I serenely said, “I just got her!” It was a beautiful moment. There were no tubes, wires or ventilator to hinder my view of her tiny features. Instead of touching little hands and feet in a NICU bed, I had my baby where she belonged—cradled in my arms, close to my breast. It was a very healing day!

I won’t go into all the details about the contrasts that accompanied the next several weeks as Shawn and I had the first time experience of what it was to care for a healthy newborn. Benjamin’s early months were mostly spent in the hospital, coupled with his extreme fatigue as a result of the holes in his heart. I was also mostly recovered from the C-section before Benjamin was able to come home. Joelle was a high-maintenance baby from day one, and we were exhausted! While I was pregnant, all I could think about was how glorious it would be to bring a healthy baby home right away. I was so thankful that she was healthy and that she was home, but I had underestimated the degree of work and energy that would be involved, especially while recovering from major surgery. I used to have to wake Benjamin up to nurse. Now I was praying that my baby would sleep for just a little bit between feedings! It took a while before we got into a rhythm and life began to have a normal balance to it again.

During these last ten and half months, I feel like I’ve had to learn to be a parent all over again. I know that every child is different, but I believe that when you have a child with a disability the differences are so much more apparent. It has been both thrilling and heart-wrenching at times to watch Joelle’s natural progression of development. As she will suddenly master a new skill, I will remember the great amount of time and effort involved for Benjamin to reach the same milestone. The day I first offered her a sippy cup I was shocked as she immediately latched on and began to suck. (To get a fuller picture of how monumental this was for me, see my June 2011 blog post “Lessons from a Sippy Cup”). I have been amazed at her alertness and curiosity as well as her motor and language development.  Last week I was reading a book to her and pointed at a picture on the page. Without skipping a beat, she extended her index finger and pointed at every page in the book as we continued to read. I wasn’t trying to teach her to point; she just did it. I was a bit dumbfounded because one of the skills Benjamin’s speech therapist and we are currently working on is to teach him to point!

With speech in mind, there was the amazing day when Joelle was eight months old, and she spoke her first purposeful word. She was sitting in her high chair while Shawn, my mom and I were seated around the table. Looking at me, Joelle began to say, “Mama! Mama!” and clearly wanted me to hold her. It was simultaneously one of the most beautiful and painful moments of my life as a mother.  I had waited over four years to hear that word spoken to me, and while my heart melted to hear it from my baby girl, my heart broke that I am still waiting to hear it from my son. I know it will come in time, just as so many other things have before.

Though they are nearly four years apart, many of my interactions with Benjamin and Joelle are very similar at this point. The same games and songs bring delighted squeals and laughter from both. The same books and movies capture their attention. The same toys are played with (and fought over). There are moments when I want to laugh and cry, such as the day when both children sat on the floor chewing on a sock! In those moments, I have to choose to laugh. In those moments I have to remind myself to enjoy and cherish the present. The developmental stages that have felt so dragged out with Benjamin will continue to progress over time, and I don’t want to look back with regret that I didn’t savor this time when my children are young.

I also have to remind myself how very far my son has come since the arrival of his sister. I remember so well the day I was still recovering in the hospital, and Shawn brought Benjamin in to see me with the news that he had just walked unassisted all the way from the parking garage! It was a huge turning point and answer to prayer. He is now walking around everywhere and gaining more and more independence. He is learning to feed himself and play with more focused attention. He is communicating through some sign language, and is thrilled at attend Pre-K every morning. He is branching out to new relationships and becoming more and more of his own little person. I am so proud of him!

As anticipated, the adjustment to having a sibling has been a challenging one for Benjamin, but overall he has done better than we expected. His initial response when we brought Joelle home from the hospital was to ignore her. (He even ignored me for the first day, which I never would have imagined)! In time his curiosity won over, and he began to look at her and touch her, often smiling and laughing as he did so. For the most part he has been gentle with her, though there has been some hitting along the way. He is also careful to step around her when she’s playing on the floor. There is definitely jealousy, too, as he adjusts to sharing Mommy and Daddy’s attention, not to mention his toys! However, none of his responses have been any different from what would be expected from any first child. Joelle continues to be fascinated by her big brother and everything he does. She is so eager to follow him and try to do whatever he’s doing. This will really get interesting once she begins walking! I look forward to witnessing the continual unfolding of their relationship.

The contrasts between my two beautiful children will become more and more apparent as time goes by, but I am reminded that I need to celebrate them both at exactly where they are and for who they are. Even as I drove to the coffee shop this morning with this blog already beginning to compose itself in my mind, I found myself praying, “Lord, help me be free to be me. Help me to be who You intended for me to be.” How quick I can be to compare myself with others, either feeling that I am coming up short or wondering why they are struggling with an area I’ve had grace to overcome. When I am aware that I am going down this road, I ask the Lord to forgive me, but I will often find myself walking there again. I am so thankful for how incredibly patient He is with my weaknesses. He is neither offended nor surprised by them, and He is committed to helping me to grow and overcome. My children remind me that we all have different areas of strength and weakness, and we need each other. We are to bear with each other in our weaknesses and rejoice with each other in our victories. Above all, we are called to love. As I raise my children I want to maintain the perspective that the greatness of their lives will not be measured by their level of abilities but by their ability to love. My greatest dream for them both is that they will love Jesus, the Lover of their souls, with all that they are and that they will extend that love to those around them. This will be a life well-lived, a life to be cherished!