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!
