Growing Awareness

Throughout my pregnancy with Benjamin, I was aware of the miracle of life growing inside of me. I was keenly aware of the many changes taking place in my body. I was joyfully aware of the first flutters of movement in my womb, and I was lovingly (though sometimes painfully) aware of the kicks, rolls, and punches as he continued to grow and stretched my body beyond what I thought was possible! I so gratefully aware that I was being initiated into motherhood, and I could hardly wait to meet my little firstborn miracle.

  

On May 21, 2009 I was nervously aware that something was not right when Benjamin was so inactive during a non-stress test, and I was tearfully aware that things were not unfolding as I had planned when the specialist sent us to the hospital for an early delivery, five weeks before my due date. On May 22, after hours on labor-inducing medicine, I was reluctantly aware that a natural childbirth would not be possible and that a Cesarean section was going to be the necessary course of action.

In the midst of my fear and exhaustion on the operating table, I was joyfully aware of my newborn’s first cries piercing the frigid air, and I could hardly contain my excitement to see him. As I waited and waited for my baby to be brought to me, I was suspiciously aware once again that things were not right. Shortly before being wheeled into recovery my husband told me that Benjamin had breathing troubles and was being taken to the NICU.

In the recovery area, I quickly asked Shawn to show me the pictures he had snapped of our son while he was being cleaned up. When I saw the pictures, a new awareness came crashing in on me that was soon confirmed by the doctor’s desire to order a genetic test…Benjamin had Down syndrome. When the testing confirmed his extra chromosome a few days later, our new journey into parenthood took an unexpected turn as we became keenly aware of our complete lack of awareness as to what it meant to have a child with Down syndrome…

                  

The last seven years have definitely been a beautiful learning process as we have navigated the various ups and downs of raising a child with special needs. While it was important for us to become educated on the various medical facts concerning Down syndrome, no facts could ever prepare us for the day-in-day-out journey of loving and caring for our son. Benjamin has Down syndrome, but Down syndrome is not who he is. Yes, he carries an extra chromosome. Yes, he has faced significant medical and developmental hurdles. Yes, he still has much to overcome in multiple areas of development. However, in the midst of these things we daily enjoy a unique and precious little boy, who’s smile has always been able to light up a room and who’s laughter can brighten anyone’s day. We have a handsome little boy with blue eyes just like his mommy and daddy. We have a lively little boy who loves to wrestle on the floor with his daddy and dance with his mommy while she sings his favorite songs.

       

 

We have an ornery little boy who knows when he’s doing something he’s not supposed to and will giggle at himself when he feels like he’s getting away with it. We have a silly little boy who loves to spin in circles until he’s dizzy, especially when he has an audience. We have an affectionate little boy who loves to give hugs and slobbery kisses.

                         

We have a routine-loving little boy who eagerly waits for the bus to pick him up each morning as he prepares for another active day at elementary school. We have a food-loving little boy who rejoices at meal times, especially when we go out to eat! We have an independent little boy, who needs alone time just as much as he enjoys time with others. Sometimes he will retreat to his room when he’s ready to take a break from interacting, and he is so content to play by himself for a time.

                               

We have a worshipful little boy who loves the presence of God and expresses such joy and delight in the midst of worship as his beaming face looks upward, as though he is seeing into another realm. Most importantly, we have a beautifully unique little boy who belongs to us, his very life a testimony of the covenant love between husband and wife. We cherish him immensely.

October is National Down Syndrome Awareness Month. This month I rejoice that I am aware of what a gift I have been given in my son Benjamin. I am aware that it is a privilege to raise him, to love him, and to walk with him through every obstacle and every victory as his precious life unfolds and we discover together who God created him to be!

I Cannot Be Silent

“There are two lines. Two pink lines. I stand in our tiny bathroom in stunned silence. Two lines—there have never been two lines. How many times have I rehearsed this moment in my mind during the last two years? I’ve lost count. I’ve pictured my reaction over and over. Will I scream? Jump up and down? Laugh? Cry? Instead, I stand in silence, studying the little strip again and again to make sure my eyes aren’t playing tricks on me. After all the tears, all the disappointments, all the prayers, is the moment really here?... The reality suddenly hits me like a wave…, and the tears pour down. Deep happy sobs erupt from the core of my being. We’re going to have a baby!”

The narrative above is an opening excerpt from my book Reflections from Holland: A New Mother’s Journey with Down Syndrome, and it lays a fitting backdrop for what I want to write about today. Why was it that those two little lines could cause such a reaction in me? Those two little lines told me that a miracle had taken place, and my life would never be the same again. They were the evidence that a human being, my baby, was growing inside of me! In this blog post I want to address an issue, a crisis of our times, that I have been passionate about for years, long before I was a mother myself. However, becoming a mother has definitely fueled the fire! I have never sought to use this blog as a platform for politics, but this issue goes far beyond politics. This is an issue of life vs. death. This is the issue of abortion.

In a matter of weeks our nation will be facing what I believe to be one of the most critical elections in our history. Regardless of what our individual opinions are of the candidates, the reality is that our next president will play a key role in shaping the trajectory of our nation for decades to come through the appointment of Supreme Court justices. The next president’s choices in this regard will no doubt affect countless lives yet to be conceived, either for good or for evil. Remember Roe vs. Wade? Since the fateful decision handed down by SCOTUS to legalize abortion an estimated 58,586,256 babies (nrlc.org) have been murdered in the womb, and the numbers grow daily. Let that number sink in… 

According to the United States Census Bureau we entered 2016 with a national population of 322,762,018. That means that since the legalization of abortion, nearly 20% of our population has been eradicated in the womb! In fact, it is estimated that 21% of all US pregnancies (excluding miscarriages) end in abortion (abort73.com). In 2012 the University of South Carolina published a review that 67-85% of pregnancies that have a pre-natal diagnosis of Down syndrome end in abortion. As I wrote above, I was overwhelmed with joy by my positive pregnancy test because I knew I was carrying a baby inside. The fact that he ended up having an extra chromosome did not change the fact that he was my child and deserving of life! In 2014, an estimated 954,000 babies were aborted (abort73.com). That’s greater than the population of Austin, TX! These are not just faceless numbers. These are boys and girls, sons and daughters, just like my children, and just like yours. I cannot be silent.

I know I will be stepping on some toes with what I am going to share next, but share I must. We have too long approached abortion as a political issue among a large field of other political issues, as though it somehow only held the same level of importance as tax reform, or healthcare, or foreign policy, or (fill in the blank). Don’t get me wrong, there are plenty of important and critical issues that we are facing as a nation. I do not want to undermine the reality of some of the crises of our times. However, we have a literal genocide of innocents happening all around us, and I cannot be silent. I have heard so many share the sentiment that, though they don’t agree with abortion and even consider themselves to be pro-life, they set those sentiments aside in the voting booth and cast ballots for those who support abortion because they “like their stance on other important issues.” It’s almost as if they are saying, “We may not particularly like abortion, but it’s legal, and it’s just the way things are. Who are we to judge?” (On a side note, it was also legal in Nazi-controlled Germany to murder Jews).  There seems to be such a disconnect in this way of thinking. Do we REALLY believe that abortion is the brutal murder of a living child? If so, how can we sweep it under the rug and treat it as simply one issue among many?

Let’s frame this another way. As mentioned above, the abortion statistics for 2014 surpassed the population of Austin, TX. Humor me for a moment if you will, and let’s pretend that, in the name of population control, it was legal for the population of a large US city to be eradicated each year. One political party was in favor of this method, and the other party was opposed. Do you think this would be a game-changer in the voting booth? “Well, I do feel sorry for those poor people in Austin, TX, but I sure like this party’s stance on health care, so they’ll still get my vote.” ARE YOU KIDDING ME?!!!

Or, let’s pretend another scenario. There is an argument from the pro-choice camp that a baby in the womb lacks personhood. Dictionary.com defines personhood as: “the state or fact of being a person,” and “the state or fact of being an individual or having human characteristics and feelings.” During a baby’s first year of life there is an incredible amount of dependency on the caregiver(s). It takes a while for a baby to even grasp the fact that he/she is separate from his/her primary caregiver, often the mother. One of our current candidates believes that an unborn person has no constitutional rights up to the moment of birth. So, let’s pretend that this was extended to the first year of life. That’s right. During that fragile first year before a child has really grasped his/her personhood, the parents could decide whether to keep their child or “terminate” their child (to use popular abortion terminology). Maybe they decide that they weren’t ready to be parents after all. Maybe they realize that they can’t actually afford to raise this child. Maybe a disability is discovered, and they do not feel up to the challenge. Whatever the reason, they have the legal right to kill their own child or pay someone else to do the grisly job. It is not required that the “termination” be a humane one. It can be painful and bloody, but it’s their “right,” and who are we to interfere or judge their “choice?” Maybe they will be virtuous and even donate their deceased child’s parts to medical research in order to “save lives!” This scenario sounds preposterous of course, but how is it really any different than the gruesome reality of abortion in which babies are murdered in the most barbaric of ways? If a political party stood for such an atrocity as murdering a child during their first year of life, would we even consider casting a vote for them, even if we agreed with their stance on other issues? Or would we be so horrified that we would stand and fight for change? 58,586,256 lives lost since Roe vs. Wade. Once again, these are not faceless statistics, these are sons and daughters, brothers and sisters…”

In 1999, our nation was devastated when two troubled teens opened fire in Columbine High School, killing thirteen people, wounding twenty more, and ultimately taking their own lives as well. We were shocked by the brutality, the senseless violence, the loss of young lives and potentials. Since that fateful day, at total of 141 lives have been lost in additional school shootings across the nation. Each incident shakes us. Each incident carries with it heartbreak and sorrow, indignation and rage. We mourn the loss of lives, and rightly we should. Every single life is unique and precious. Not a single one can be replaced. Yet, the number of lives lost in school shootings since that tragic day in Columbine is only 0.00000241% of the lives lost since the legalization of abortion. It is only 0.000147% of the lives lost in one year at the hands of abortionists. If we mourn for the young ones murdered in our schools, why don’t we mourn for the young ones murdered in the wombs? If we are enraged by the 141 lives that have been lost, why are we not enraged by the 58,586,256 lives that have been lost?!

We cannot afford to make abortion a merely political issue anymore. We cannot afford to allow the senseless murder of the next generation to continue. We must stand for life, and that includes our stance in the voting booth. In Matthew 12:30 Jesus stated “Whoever is not with me is against me…” I believe this is true concerning the lives of the unborn. Proverbs 6:17 shares seven things that the Lord hates, including “…hands that shed innocent blood.” There is no neutral ground on the issue of abortion. If I am not standing for the lives of the unborn, I am standing against them, and I will go as far to say that I am standing against the Lord of all creation, who knows and loves each of these children who remain nameless and faceless to the rest of us. I cannot claim to be pro-life and cast my ballot for those who support the shedding of innocent blood. The next generation is at stake. I cannot be silent. 

WARNING: If you continue to scroll down you will see some very disturbing images of aborted babies. I really wrestled with whether or not to share these images. I wept the first time I saw them, and then I realized this is the very reason I must share them. When we look the other way, it's easier to remain passive; it's more comfortable for sure. If you are willing to be uncomfortable though, look at these horrific photos and allow your heart to be broken for the plight of the unborn. Allow a cry for justice to rise up inside of you. If we won't stand up for these precious babies, who will?

First Trimester Abortion

Second Trimester Abortion

Third Trimester Abortion

Aborted baby parts pulled from a dumpster behind an abortion clinic

I CANNOT BE SILENT!

  

Giving Back to Grandma Jan

On May 21, 2009 I made a tearful phone call to my mom as Shawn and I headed from the specialist's office to the hospital after an unnerving change of events. Due to heart complications, Benjamin was to be delivered right away at 35 weeks gestation. Could she please arrive as soon as possible? I was calling from Oklahoma, and she was responding from Whidbey Island, WA where she had moved the year prior to help care for her mother as she began the steady decline into Alzheimer's disease. It was a sudden change of plans and a taxing travel schedule, but she arrived in Tulsa and was by Benjamin's NICU crib less than 24 hours later. She remained with us for the next six weeks. She stayed with me in Tulsa for nearly the first month of that time as I recovered from the unexpected C-section and we waited for our sweet baby to be released from the NICU. Shawn had to return to work an hour away and could not be there all the time. I don't know how I would have made it through those long and lonely days (and nights) without my mom's company.

Upon Benjamin's homecoming, she returned with us to our hot, little, two-bedroom rental house. The Oklahoma heat was sweltering in June, and our small air conditioner did very little to keep the indoor temperatures bearable. She sat and sweat and cuddled tiny Benjamin while I would try to get some much needed sleep. One night in the wee hours of the morning she held a screaming baby and walked up and down the living room floor with him while Shawn rushed me to the ER. I was in unbearable pain and experienced my first (and only) panic attack, making it difficult for me to breath. It would be two more years we would learn that my pain was triggered by gallstones. She took the exhaustion of those weeks in stride, cherished the cuddles with her first grandchild, and eventually had to return home to Washington. During that time she also kept a written record of events, and soon after she mailed me a notebook entitled "Grandma Jan's Journal." I will always cherish her writings. She chronicled the first precious weeks of my son's life when I didn't have the energy to even think about writing. Her journal became the middle section of my book Reflections from Holland: A New Mother's Journey with Down Syndrome.

Once home in Washington, she expected to resume her routine of living with and assisting her mother. Her youngest brother owned land in the woods where he had built a house and the necessary caging for his unique hobby of raising cougars and other exotic cats. My mom and grandma lived together in a second house on his property. My grandma was still fairly independent at this point, but my mom had taken over all of the shopping and cooking. She was present to keep her mother company and to be a watchful eye for her overall well-being. However, within weeks of arriving home from her visit in Oklahoma, she received word that her elder sister Ann was dying. She went in for a stomach surgery, and was found to be full of ovarian cancer. Once again my mom boarded a plane and, instead of flying half-way across the country, she went coast to coast, arriving in North Carolina. Ann's final days ended up being stretched into 66 pain-filled final days as she was moved from facility to facility. My mom loyally stayed by her side during that time, advocating for her in some less than desirable conditions and being a presence of comfort. She loved her, suffered with her, and faced many lonely days and nights in unfamiliar settings. Upon Ann's death, she made another stop in Oklahoma again, this time for some healing cuddles with her grandson.

As she grieved the loss of her sister, my mom once again resumed her life in Washington, and keenly noticed the changes that took place her mother's memory and ability during the months she was away. Life regained a sense of normalcy, but she was always sure to plan visits to Oklahoma every three months or so. Spending time with her daughter, son-in-law, and especially her little grandson gave her the needed reprieve and refreshing from the strain of witnessing her mother's steady decline into memory loss. However, the beauty of Washington, her exceptional church family, and her mission of caring for her mother always drew her back again. However, I had a building inner sense that one day she would be coming to Oklahoma to stay.  

In the fall of 2011 I had some more visits to the emergency room, and I was finally correctly diagnosed with gallstones. An outpatient surgery to remove my gall bladder soon followed. Benjamin was a heavy two-year-old who was still only crawling and required the care of an infant. I had my surgery near the end of the week, and I was hopeful that I would be recovered enough after the weekend to resume Benjamin's care when Shawn had to return to work. However, the closer we got, the more I realized that I was hurting too much to be lifting him all the time. Once again I made a phone call to Washington and asked my mom if there was any way she could come. Once again she made arrangements and was soon on a plane headed our way. Her help that week was immeasurable!

The following February brought some major transition for her in Washington. The level of care my grandma needed had surpassed what my mom and uncle were able to provide. They made the difficult decision to move her to a professional facility for people with dementia called Home Place. It was an exceptional care home, but it was a hard change nonetheless, especially in the first weeks as my grandma pleaded to be brought home again. In time my grandma's memories of her house in the woods began to fade. The loss of memory was heart-breaking, but her contentment at Home Place was reassuring. My mom visited her on a regular basis as she processed her conflicting emotions of relief and guilt that she was not able to continue caring for her mother at home.

She continued to enjoy visits to Oklahoma and was delighted to receive the news that summer that we were expecting our second baby! Knowing that I would require a second C-section birth, she blocked out six weeks to stay with us when Joelle was born. She arrived the week before to help me in the midst of late-term pregnancy, and she stayed with us through my recovery. When the time came for Joelle to be born, my mom took care of Benjamin so that Shawn could be with me at the hospital. Of course, she was sure to come have some newborn cuddles too!

  

What I have not mentioned thus far is that my mom has lived for years with fibromyalgia, which affects her with chronic fatigue, muscle aches and pains, and a weakened immune system, among other things. The strain of travel, caring for Benjamin by herself, and the winter weather took it's toll, and she came down with a nasty virus shortly after we brought Joelle home. I felt so bad for her. Our house is small with no guest room. She was staying in Joelle's nursery on an air mattress, (we kept the baby in our room), and I knew she was both miserable and frustrated because it wasn't safe for her to hold her new granddaughter while she was still contagious. I was recovering from major surgery, and Shawn and I were both exhausted from our colicky, high maintenance little princess! We were all in need to someone to take care of us! Prescription medicine and lots of rest finally put her on the mend, and she was able to re-engage with the family. Once again, her help was so appreciated as she would spend the evenings after Benjamin went to bed holding a baby while Shawn and I caught a few hours of sleep before beginning our night time marathon. 

The return to Washington was again marked by rapid change and transition. During the six weeks my mom was with us, my grandma had taken a definite turn for the worse. She celebrated her 86th birthday on April 24, and she peacefully passed away in her sleep a few weeks later on May, 16 2013. Thankfully, she was still able to recognize her children up to the very end. A definite chapter in my mom's life had come to a close. In addition to caring for her mother over the last five years, she had also been chronicling the journey along the way. The next year she would compile her writing into book form and release her first self-published book Three Corner Has My Cat: Caregiving in Alzheimer's Time by Janis Lussmyer (available on Amazon). 

Though she loved her life on Whidbey Island, surrounded by natural beauty and the support of her church, my mom was feeling an increasing pull to Oklahoma and her two precious grandchildren. A few months after her mom's passing, she flew out to visit and to begin looking around for a possible home. In a timing of events that only God could orchestrate, the house across the street from us hit the market a few days before her arrival. To make a long story short, she was the only one to even view the home, and before she returned to Washington, she had already signed the contract! A few months later she arrived in Oklahoma once again, this time to stay, and began a brand new chapter of life. It was the first time we had lived in the same town since I graduated from high school. 

It has been a remarkable blessing for us all to have my mom so close these last two-and-a-half years! She jumped eagerly into her role of grandma and has given us immeasurable help with the kids. We have been able to enjoy casual family dinners as well as holiday celebrations. She has been company to me on some of my more taxing mommy days, and my children absolutely adore her. Regular visits from Grandma and trips across the street to her house are always a cause for celebration!

It was so special to have her close by through my entire pregnancy with Josiah, and she prepared herself to help with the older two while Shawn and I were at the hospital upon his arrival. None of us realized all that would end up requiring. Due to the inhalation of amniotic fluid right at birth, Josiah was immediately fighting for his life. He ended up being transferred to a NICU in Tulsa for his first few days. I was recovering from my Cesarean section in the local hospital, and Shawn was staying in Tulsa with our newborn son. Grandma Jan was beyond weary, but she stepped up and did what was necessary in caring for the other two. Some wonderful friends gave her a few hours of reprieve at times so she could get some necessary rest, and another friend stayed by my side in the hospital. It was a long three days, but finally we were able to bring little Josiah home and transition into life with three children. Grandma Jan quickly became on of our little guy's favorite people, and he joins his older siblings in demanding her attention as soon as she enters a room!

It feels so natural now to have my mom living so close. However, I have tried hard to not take this gift for granted. It's become very natural for her as well. Oklahoma is home, and she has established herself in the community, getting involved in a local church and related activities and even volunteering once a week at a Christian-based hospice home named The Journey Home. At times we've discussed ideas about the future, including the possibility of getting a large house all together if she reaches the point someday of not being able to maintain a home by herself. For the present, we've been enjoying our lives that are both deeply combined and uniquely separate. We've always known that God is the One who brought her here, and recently we have recognized with gratitude more of His purpose in doing so. 

On May 27 (my 34th birthday) I accompanied my mom to an appointment for a mammogram and ultrasound in order to test the lump in her breast she had recently discovered. We had both been experiencing a supernatural peace since she found the lump. I interpreted this to mean that it would end up being nothing more than a cyst. I found out later that she wasn't so sure. It was both shocking and sobering when we were told following the procedures that she more than likely has breast cancer. Biopsy testing and an MRI over the next few weeks have confirmed this. What we have learned thus far is that she has triple negative invasive ductal carcinoma (a common and aggressive form of breast cancer) and that there is some lymph node involvement. The recommended course of treatment right now includes chemotherapy, followed by surgery, and finally radiation. It has been a very emotional month, but the Lord has so graciously filled both of our hearts with His peace that truly passes understanding. My mom's prayer from the very beginning is that God would be glorified through this all.

Next week I will accompany my mom to her oncologist appointment and to the out-patient appointment to have a port inserted so that she will be ready to begin chemotherapy. I have already taken her to a handful of appointments and some wonderful friends have accompanied her as well when I have been unable to. We have no idea what the next several months will be like, but it could be a very long and trying road. Whatever it looks like, though, I know one thing--I am committed to being there for my mom. 

When we used to discuss the future, she would often lament that her greatest fear was that she would one day become a burden to Shawn and me. She knows first-hand the ups and downs of caring for an aging parent. I was relieved a week or so ago when she told me that her fears about this are dissipating now that she is faced with this present need for help and care. As I said, I don't know what things will look like, but I do know that, whether on good days or bad days, it is a privilege to serve her. I have witnessed my mom's Christ-like service to her family over the last several years--now it's our turn to give back to Grandma Jan! I love you, Mom.  

To the Other Mom in the Waiting Room...Please Don't Apologize

Our conversation started out naturally enough. We were both sitting in the waiting room at the pediatrician's office for the Saturday morning clinic for sick children. You were there with your beautiful, 20-month-old daughter who had a rash. I was there with my precious, 10-month-old son who had a yucky sounding cough. I'm sure both of us had things we would have rather been doing on a Saturday morning, but we were making the best of it.

Waiting rooms can often be eerily silent places as people are buried in their smartphones and magazines, or as they simply stare straight ahead, avoiding eye contact with another stranger. I was pleased that you responded well to my initiative to strike up a friendly conversation. We chatted back and forth about our children and made some general small talk as we each waited for our child's name to be called,....

...but then a few simple phrases seemed to change everything...

I mentioned that our family was looking forward to celebrating my oldest child's seventh birthday that weekend. You smiled and said, "Seven? Oh, I bet he loves to help with the baby!"

Now at this point, I had a choice to make. I could smile and move on, or I could be real about the different dynamics our family experiences in this area. I love to talk about my kids, and I love opportunities to help create awareness about Down syndrome, so I decided to be real...

Smiling back at you I started to share, "Well, actually, my son has special needs..."

Before I could go further you quickly interjected, "Oh! I'm sorry!"

I'm always a bit taken aback when people apologize to me concerning my child, but I continued on.

"It's fine. He has Down syndrome, and..."

Once again you cut me off with another sympathetic, "I'm sorry!"

This time I was a little more direct...

"It's nothing to be sorry about. We love him crazy, and he has taught us so much! He's just not at a place yet to be able to help with the baby."

In response you smiled uncomfortably and busied yourself with your daughter. A moment later you picked up a pamphlet from the side table and started to flip through the pages. It was becoming increasingly clear that our friendly conversation had come to an end.

Let me first say...I am not angry with you. I believe you had no ill-intentions, and you were not trying to offend in any way. I am not angry with you, but I am saddened by your response. As I told you, the fact that my son has Down syndrome is nothing to be sorry about. If only you would have allowed me to continue I could have told you why...

I could have told you that my little boy's life is such a precious gift, especially considering that the doctors and nurses in the NICU didn't expect him to survive. I cannot imagine my life without him today.

I could have told you what a little over-comer he is after facing numerous health complications, including open heart surgery, and the fact that he is healthy and thriving today.

I could have told you what a champion he is--working so hard to reach various developmental milestones, and I could have shared with you the incredible celebration that has accompanied each one. I am so proud of him!

I could have told you about his contagious smile, his delightful laughter, and his wholehearted affection. My son carries such joy.

I could have told you about his unique personality, and some of his favorite things that include Elmo, "The Wheels on the Bus," and stuffed animal monkeys.

And yes, I could have told you about the challenges we have faced, but I also could have told you that each one has carried with it an opportunity to learn, grow, and discover the heart of God in brand new ways.

I could have told you that our journey may look different than some (then again, who's life journey ever looks the same), and that it carries its own unique beauty. I would not be the person I am today if I had not had the privilege of walking this road.

I could have told you so much...

...and hopefully your discomfort would have dissolved, and you would have been able to see that my son is not something to apologize for...he is someone of immense value--a good gift I will always treasure!

So, today, as I remember our short encounter, I bless you, and I pray that you will have opportunities in the future to truly see and know the person behind the disability. I promise you that your life will be enriched!

Seven Years of Swinging

In less than a week Benjamin will turn seven years old. SEVEN! The time has gone by so quickly, yet this journey into motherhood has felt like it's own little lifetime as well...

Seven years ago today I was bulging with my first baby, bone-weary yet full of anticipation. My emotions were constantly swinging with the fatigue and often chaotic hormones of late-term pregnancy and the joy of knowing I would soon meet this child for whom I had been longing. Seven years ago, though, I was still expecting an early June baby, oblivious to the roller coaster we were about to board in less than a week with an unexpected labor induction and ultimately a Cesarean birth. Seven years ago I did not know that my sweet baby would be fighting for his life from the moment he was pulled from my womb, nor that he carried an extra chromosome. Seven years ago I did not know that my swinging emotions were about to reach brand new heights of heart-wrenching pain and overwhelming joy.

Those first weeks following Benjamin's birth were full of a depth of love I never knew was possible as I soaked in the moments with my child, touching little hands and feet in the NICU crib and finally holding him in my arms after an agonizing nine day wait. Those weeks were full of a depth of pain I had not known before as well, as I watched my small son struggle for his life and tried to process what it would mean to raise a child with Down syndrome. My emotions were in constant swinging motion: I was thankful for the care he was receiving and grateful for the services in place through the Ronald McDonald House and the Hospitality House that enabled me to stay close by. I was resentful that we were in a hospital instead of home, our family separated as Shawn had to return to work in another town, and I was angry that my son was not the healthy, whole baby I had dreamed of welcoming into the world. A close friend gave us wonderful advice during those shaky weeks that became an anchor for my heart, "Celebrate your son every day."

Life eventually found its own rhythm and balance again, though I continued to ride the swing of joy and pain, grief, and celebration. I remember the first time Benjamin used a swing at the playground. He was two years old, still functioning as an infant. It was a beautiful day, and we just had to be outside. I gingerly placed him in the baby swing and began to gently push. As my little son began to swing that day, so did my emotions as I watched a small child close to his age running and playing all over the playground. I felt the pain of his present delays even as I experienced the joy of watching him so obviously enjoying this little outing with Mommy. I realized that the most important thing was that he was having fun, and I soaked in the cuddles and squeals of delight he let out as I held him close that day. 

There were more outings to the playground, some with just the two of us and some with Daddy. Benjamin has always loved the swings. On one particular outing, Shawn started snapping pictures as I pushed our little guy, and captured the perfect shot. We didn't know at the time that this picture would become a life-long favorite and the inspiration for the cover of my first book as I poured out my heart into print form to share our early journey of raising a child with Down syndrome. Knowing others were "swinging" as well in similar circumstances, I hoped that our story could offer some encouragement and comfort.

As we approach this seven year milestone in my son's life, I must say that I am so very proud of him! Benjamin has overcome more in his short life than many have over a life time. He is literally a walking miracle. I have gained more wisdom and experience in parenting him as time has gone by, but I know I have so much more to learn, and there is so much more he has to teach me. I still experience swinging emotions at times: I can feel overwhelmed by big boy diapers and the struggles of trying to effectively communicate with a child who is still non-verbal. I can still feel waves of grief hit unexpectedly with the reality of having a child with special needs and all the challenges that entails. I can confidently say, though, that the joy always outweighs the pain. The hugs, the laughter, the simplicity of my son are gifts in themselves, and I enjoy him so much. I also realize that emotions will always swing, no matter what the circumstances of life. However, truth is constant. 

The truth is that Benjamin was knit together in my womb by the God Who loves him, Who chose him, and Who has a beautiful plan for his life. The truth is that Benjamin is my child, my first born treasure, and I love him with every fiber of my being. The truth is that this sweet little boy will continue to grow and develop as the years go by, and his life is worth celebrating, on his birthday and every day! 

HAPPY BIRTHDAY, BENJAMIN!

I LOVE YOU FOREVER.