Saturday, April 29, 2017

He is Still My Son

For months—if not years—I tried to ignore the signs. It was easier to make excuses. It was easier to brush them off. It was easier to assume that the behavior patterns I was seeing in my son were all related to Down syndrome or simply personality. But no matter how hard I tried, my suspicions grew…

As a two-year-old, one of Benjamin’s favorite pass times was to sit and twirl his little high-lighter yellow, stuffed gorilla in his chubby, little hands. He would study it from every angle, entirely absorbed and fascinated. It was pretty darn cute, though we always tried to encourage more interactive play. As a seven-year-old he still continuously seeks out plush toys (monkeys and Elmo are his personal favorites, but anything with limbs will do) so that he can obsessively twirl them or chew on their limbs. It is no longer cute but concerning. 

As a three-year-old, his fascination with light-up, musical, baby toys and the spinning of his See-n-Say, seemed age appropriate for his current level of play. He loved the repetitive patterns of the sounds and lights. As a seven-year-old, his interest in toys has not progressed, and he his favorite toys remain the same. They have become the common background noise in our home.

When Benjamin was only a few years old I would attend play dates with him so he would have the opportunity to be around other children. He showed little to no interest in them, but I chalked it up as his young age and current developmental level. After years of opportunity for peer interaction at school, and now the presence of younger siblings at home, he still displays little to no interest in playing with other children (unless they can sing him “Wheels on the Bus” with the hand motions)! So much of the time he seems to be off in his own little world. 

For so long I have been aching to hear my son say “Mama,” or any purposeful word for that matter. As the years slip by, his non-verbal state becomes more heart-breaking, but I continue to hold onto hope that one day he will speak.

When the repetitive hand-flapping surfaced a year or so ago, my suspicions grew even more. As a member of various Down syndrome support groups on social media, I was also becoming increasingly aware that our life with Down syndrome looks VERY different from others. But still, I struggled to admit my concerns. I was afraid that giving voice to them would solidify them, and was I ready to face that reality?

Finally, I realized that I was being selfish. I wanted to resist what I was sensing because I didn’t want to deal with the pain that may result. Benjamin is my son whom I love with all my heart. Nothing will ever change that, and understanding what is truly going on with him will make it easier to give him the help he needs. So, with a deep breath and a new resolve I told my husband, “I think we should have Benjamin tested for autism.”

There... I said it…I can’t take it back again. Shawn was surprised and resistant at first. He had been making the same excuses. He feared facing a dual diagnosis as well. I explained to him my reasoning, and before long he relented and even supported the new quest.

Where to begin? I began by contacting the pediatrician’s office, requesting a referral for testing. I was shocked by the response I received. “There is no reason to test Benjamin for autism since he already has Down syndrome. It wouldn’t change anything.” EXCUSE ME!!! At best this response was outdated ignorance. Not to be deterred I reached out to the local support group. I was referred to a child psychologist who would not require a doctor’s referral and whose services would be covered by Benjamin’s insurance. Thus, began a several month process--largely due to scheduling gaps caused by his full caseload.

There was the initial consultation with my husband and me, there were mountains of paperwork and questionnaires to be filled out, there was a one-on-one observation session with Benjamin and the psychologist, there was a joint observation session in which my husband was present and able to answer questions, and finally, there was the ending consultation that I attended while the psychologist reviewed the official results with me. This last session was less than a week ago at the time of this writing. Going in, I expected him to tell me that Benjamin is indeed on the spectrum, but I was hopeful that it would be a mild case. It was both surprising and disheartening to hear him say that my son has autism spectrum disorder level 3—the highest level. He did assure me that this can change as our son grows and develops and as we continue intervention services with him. But still…my baby boy is faced with another daunting hurdle after having been through so much since he was born.

That evening after Benjamin was asleep I snuck into his room and lay down beside him. I held him, and kissed him, and prayed over him. I told him how very much I love him. He is still first and foremost my son. A new diagnosis does not change that and never will…

This is the same little boy who opened my womb, giving me my first positive pregnancy test after over two years of trying and countless tears of longing to conceive, finally making me a mother…

This is the same little boy who flooded my heart with an intensity of love and a pain I never knew was possible when he entered the world fighting for his life…

This is the same little boy who defied the odds and was nurtured at my breast for over two years…

This is the same resilient little boy who has overcome challenges both medical and developmental, all the while teaching me that what others may perceive as little things are cause for big celebration!...

This is the same little boy whose favorite things are his See-n-Say, “Wheels on the Bus,” Elmo, and stuffed monkeys, (not to mention food!)…

This is the same little boy who has always loved to have Mommy sing to him as he holds onto my neck and bobs up and down, dancing with delight…

This is the same little boy who has flooded my heart with joy every day with his sweet smile, contagious laughter, and affectionate hugs…

This is the same little boy who re-ignited my passion for writing and became the inspiration for my first book Reflections from Holland: A New Mother’s Journey with Down Syndrome

This is the same little boy who has given my husband and me the opportunity to connect with a beautiful community of people over the years who we may have never met otherwise…

When Benjamin was a newborn fighting for his life in the NICU, we knew very little about Down syndrome. So, what did we do? We began to educate ourselves. We allowed ourselves to grieve. We reached out for support. We prayed. And above all—we LOVED our son. We took to heart the wise advice from a dear friend to “Celebrate your son every day.”

We are now at a new crossroads with Benjamin’s new diagnosis. Presently, we still know very little about autism. So, what will we do? We will begin to educate ourselves. We will allow ourselves to grieve. We will reach out for support. We will pray. And, most importantly, we will continue to LOVE our son. We will choose to celebrate him every day, through good times and bad. After all, at the end of the day, Benjamin is still our son, and he is enough!


Saturday, April 15, 2017

Don't Sweat the Small Stuff

"Don't sweat the small stuff," a wise woman recently spoke over me as I was receiving prayer at a small group gathering. Her simple words resonated deeply on the inside, and through them I felt the gentle exhortation of my Savior.

It's so easy to allow the trivial circumstances and common frustrations of life to rob us of our peace and joy. It's so easy to make mountains out of molehills and become so caught up in the temporal that we have no time to consider the eternal. How quickly I can fall into this trap and find myself spinning in my mind and my emotions!

I'm behind on the laundry!...

We didn't get the dishes done, and now I have to prepare dinner in a messy kitchen so we're not late for our meeting tonight!...

Benjamin had a dirty diaper blow-out, and he's a mess, along with his clothes and his the sheets on his bed! Where do I start?...

I need to get all three kids out the door in the next five minutes so we're not late for Benjamin's therapy appointment. My four-year-old doesn't want to put on her shoes, my toddler keeps pulling off his shoes, and Benjamin is crying by the door because he's anxious to go!...

My toddler is trying to eat things out of the trash can!...

My four-year-old made a complete mess of her bedroom when she was supposed to be taking a nap!...

I have ten things on my to-do list, and I can't seem to complete even one without constant interruptions!...

These are some simple previews from my day-to-day life. Your list of triggers may be completely different, but you get the idea! There are constant opportunities in this journey called life to allow the tyranny of the urgent to take center stage in our hearts and minds. Before we know it we're caught up in simply trying to manage and maintain instead of living with purpose and vision.

We have a few chalk boards in our kitchen on which I like to write down scripture verses and inspiring quotes that I can read as I go throughout the day. Last week during my early morning devotional time, a phrase ran through my mind, and I quickly jotted it down as a constant reminder:

Steward the temporal. Cherish the eternal.

Isaiah 26:3 holds a wonderful promise...

You will keep in perfect peace all who trust in you, all whose thoughts are fixed on you! (NLT)

When I focus my mind on Jesus, I am able to see the circumstances around me from the proper perspective. I don't have to allow the trivial things of life to control me. I want to be a good steward of the mundane realities that come with caring for a home and raising small children, but I desire to approach these tasks with a heart of worship and an eternal vision. This will only happen as I take me thoughts captive and focus them on Jesus.

I've been considering this advice as it relates to the hearts of my children as well. Small stuff can appear VERY BIG to a young child's perspective. Simple inconveniences and frustrations can be perceived as a major crisis...

I can't get my toy to turn on! (Benjamin)

The Elmo DVD hasn't started yet! (Benjamin)

My shoe is on the wrong foot, and I have to switch it! (Joelle)

My little brother got into my toy box! (Joelle)

Mommy went into the bathroom and shut the door on me! (Josiah)

I want to pull things out of the cupboards and drawers, and Mommy stopped me! (Josiah)

I'm hungry and supper isn't ready yet!!! (All three)

From my vantage point, I can easily recognize how trivial the triggers for their meltdowns really are. (Father God could say the same about me!) However, in the midst of my children lamenting over the temporal, I have an opportunity to invest in the eternal. Let me explain...

In another hour (or even five minutes) they probably won't remember the mishap or frustration that currently feels so monumental to their little hearts. What they will remember, though, is my response to them in the midst of it. They will remember if I distractedly brushed them aside so that I could complete my "supremely important" task of chopping the vegetables for dinner or sorting the dirty laundry. They will remember if I reacted to their frustration with frustration of my own. They will remember if I disregard their very real feelings because I see the situation as so very trivial.

I don't want these to be their memories.

I want them to remember Mommy being free to stop whatever she's doing to hug them and wipe away their tears.

I want them to remember Mommy coming alongside and helping them remedy the situation.

I want them to remember Mommy taking the opportunity to teach them that their emotions are not wrong, but they have a choice in how they respond.

I want them to remember Mommy praying with them and asking Jesus for His peace and His help in any given situation, teaching them to turn to the Lord in all things.

I want them to remember watching me make good choices in my responses because the actions I model to them will teach them more than my words ever could.

I want them to remember Mommy humbling herself and asking for forgiveness in the times that I let my emotions get the better of me and I don't respond well.

I want them to feel and know that Mommy is a safe place to run when they are hurting or upset so that they will keep coming as the years go by and the nature of their struggles and frustrations take on a new face.

Ultimately, I want them to see in me the One who is truly the safest place they can run, so that they will learn to make the Lord their refuge at all times.

Don't sweat the small stuff...REDEEM IT!

The truth of the matter is, the "small stuff" creates the building blocks for the "big stuff"--things like character development, communication, security, identity, relationship, priorities...and the list goes on and on.

Steward the temporal. Cherish the eternal. 

I want to faithfully steward the "small stuff" of the temporary in order to build on that with is eternal in my life and the in the lives of my precious children. And that, my friends, is BIG!

Saturday, April 1, 2017

Gifts and Rewards

This verse is a favorite of mine because it so clearly speaks of God's heart and His value system. If the Lord of all creation has a gift He desires to give to me, I want to receive it gladly! If He has a reward with which He wants to bless me, I want to embrace it fully! How beautiful the thought that each and every child is a gift and a reward. How can anyone feel insignificant in the light of this reality? Each and every child conceived is a gift and a reward from the very heart of God. 

Notice that this passage does not hold any exclusions. It does not say, "Children who were specifically planned for...," or "children who are perfectly healthy...," or "children who we can afford...," or "children who were born under the right set of circumstances...," or "children in manageable numbers..." No. It simply says "Children are a gift from the Lord."

Unfortunately, we live in a culture that often perceives children as an inconvenience, a burden, or even a "mistake." We have been so deluded that we even deny the humanity of a child in the womb if that child is not wanted. These sentiments are often even stronger if a child has special needs and/or medical complications. But the Word of God says that "Children are a gift from the Lord..." This means ALL children, regardless of any external circumstances. 

My sweet son Benjamin, with his extra chromosome and the resulting challenges that he faces, is a gift from the Lord. He is a reward. It is our joy and delight to embrace him as such--to love, nurture, and care for him and to learn more about the beautiful heart of Father God along the way. He is a blessing, and he always will be!

If we read on in Psalm 127 it tells us, "Children born to a young many are like arrows in a warrior's hands. How joyful is the man whose quiver is full of them!" (vs 4-5; underline mine). We also live in a culture that often discourages and even criticizes large families. So many couples want to limit their families to one or two children. We are given so many reasons for this--money, education, manageability, career pursuits, etc... However, God's value system is so different from our own. He clearly tells us that children are a gift and a reward, and that multiple children bring joy. Each child is created in the image of God, full of potential and destiny that no one else can carry in the same way. 

Shortly before I conceived Joelle, our second child, I attended a women's gathering called The Esther Call. It was a day of fasting and prayer for the ending of abortion in our nation. During the event we had amazing times of worship and prayer, along with powerful testimonies of women who's lives had been impacted by abortion. Some were post-abortive mothers who grieved for the children they lost, some were siblings of aborted children, who wished they had the opportunity to know their brothers and sisters, and some were abortion survivors, whose mothers chose life for them even at the last minute. As one voice, the hundreds of us who were gathered declared Psalm 127:3, and thanked the Lord for the blessing of children. At this time I was longing to have more children, and in His goodness the Lord rewarded me a few months later. We now have three precious gifts, and we are willing to receive more "arrows" from the Lord if He wills it for us. 


The truth is, so much of what the world perceives as gifts and rewards are material in nature. They are fleeting, soon to pass away. However, the gifts and rewards of God are eternal. Each new child is an eternal soul, one birthed from the heart of God, and one who Jesus shed His precious blood to redeem. As parents, we have the monumental calling of teaching and preparing our children to know the Lord, to walk in His ways, and fulfill the call of God on their lives. He did not promise that this calling would be easy or trouble-free, but He did promise that it will be filled with joy!