Parenting Our Special Needs Children

Dietrich Bonhoeffer once said: ‘our ability to really love will be tested and proven not in the flight of our ideas but in our actions.’

You have probably been reading my series of essays about parenting against the tide over the past 5 months and hopefully agree with me that parenting provides us with the most significant, tangible proof-of-love opportunities within a lifetime. They [opportunities to love well] arrive each and every day and without special prompting. They teach us to do little things with great love; so we have to remain open to the daily challenge. As Bonhoeffer realized, authentic love is proved — not in the flight of great ideas but in everyday, sacrificial actions that often go unnoticed but will be generally appreciated. Time itself helps to prove the authenticity of the sacrifice and the love because truth prevails. And it is in giving that we receive the grace to persevere even when the actions required are very difficult.

Yes, we are also called to love others; however, those opportunities may not be as personal as the call to love our spouse and children — daily and well. The call to love others certainly is not as intense or frequent; sometimes it may even seem easier to love those we don’t know. Saint Mother Teresa provided a sound reason for this disparity when she stated:

“it is easy to love the people far away. It is not always easy to love those close to us. It is easier to give a cup of rice to relieve hunger than to relieve the loneliness and pain of someone unloved in our own home. Bring love into your home for this is where our love for each other must start.”

And so, every day parents are called to prove their love.

Mostly, parents carry the hope and the expectation that their marriage and family life will be happy, they and their children will be healthy and somewhere along the way they will accumulate enough wealth to live comfortably. Unfortunately, because of this hope and expectation, parents can sometimes lose a grip on the important things of life when/if something unexpected happens. We may outright refuse to accept a sudden turn of events that seems more negative than positive and blame God, spouse or someone/something else for the troubles. No matter the difficulty, however, we are still called to love and the proof is in our actions.

What is one of the most unexpected and unnerving opportunities to show love that awaits a small number of you? I think it is the receiving of a bad-news prenatal medical diagnosis pointing out a birth defect of your (or a friend’s) unborn baby or a very young infant. I know this because I have been there. The news that our seventh baby had Trisomy 21 [Down Syndrome] hit me suddenly and hard. It immediately made me ask God: why? I remember clearly hearing His answer despite my many fears and tears, feelings of intense anguish, turmoil and initial denial. It was: ‘Why not?’ His answer forced me to reassess previously held beliefs. Did I really believe that every human person was made in the image and likeness of God? Did I still believe that every life had purpose and meaning — whether it be short or long, accomplished or simple? Most importantly, did I really believe that God equipped me with enough knowledge, ability, patience, and fortitude to parent a baby with special needs? And lastly, did I really know how to love unconditionally?

Were these questions easy to answer? Not for me; however, it was the unexpected that taught me much. As I already said, Kyra’s diagnosis was a tremendous shock to me physically, spiritually and emotionally. Yet, it also gave me the opportunity to try and understand more about God, myself, my husband, and our children. It also gave me the opportunity to better understand what authentic, unconditional love really means and requires. And it has taught me to better understand what God means when he asks us to surrender our wills to His.

I am not suggesting that God caused Kyra to have Trisomy 21; that came about because of an episode of nondisjunction during the early stages of the pregnancy. Nondisjunction is caused when both chromosomes (XX) from one pair go into one cell and no chromosomes for that pair go into the other cell. [https://www.nichd.nih.gov/health/topics/down/conditioninfo/pages/causes.aspx] So, from the beginning, God knew Kyra would have the condition and He willed it (allowed) it for her sake and ours and everyone else. Like all other babies, she is a gift to the world she lives in. It is up to the rest of us to see her as gift. This insight came about after accepting God’s will and then accepting her condition and finally her! I recall the biting words of one person who told me that they believed that Kyra has Down Syndrome because I didn’t pray for and expect a miracle. Little did that person know that prayers stormed heaven pleading for a cure for Kyra. Eventually, it became obvious that God allowed Kyra to have Down Syndrome for all the right reasons which few of us could possibly have understood at the beginning of this journey.

Unfortunately, some parents-to-be do not push aside the fear brought on by the unexpected news of their unborn child (or young infant already birthed to life outside the womb). Holding onto fear disallows any of us from undergoing the necessary changes of heart required to arm ourselves with courage and fortitude. In essence, we lose out on the finest opportunities to learn how to love as God loves us if we allow fear to dictate life decisions. Pope Emeritus Benedict VI taught us to “see God with our hearts rather than with our minds or eyes. However, to see God, our hearts must be pure, interiorly open and free.” And the same can be said of Truth since God is Truth. We see Truth with our hearts rather than with our minds or eyes. However, to see Truth, our hearts must be pure, interiorly open, and free. The same can also be said of Love. And it is the lower case truth and love that cloud our ability to see God because of its lack of purity and openness.

[Tweet "Holding onto fear disallows any of us from undergoing necessary changes of heart."]

Let me introduce you to Kyra and several of her friends. Together they have changed our lives for the better. Kyra is our youngest child; she recently turned eighteen years old. She has Down Syndrome. I like to say that she is 90% normal and 10% different. Her not-normal ways don’t drive me crazy; rather, it’s the normal ones that do. Consider Prom. Unlike her siblings, Kyra had no worries about finding the right dress or shoes. Neither did she obsess over the fact that the dress may have been too this or too that. Whatever I picked out would have been good enough for Kyra. Her curfew — right after Prom - was no problem either. After all, she KNEW she was tired and was content with the amount of excitement and fun she had that night. Mostly, Kyra accepts things as they unfold rather than hoping for more or pressing for more. These all come from her not-normal nature as do the following examples. Sneaking in alcohol to the Prom would never occur to Kyra; neither would sneaking away to go elsewhere during Prom cross her mind. She would have been completely upset had her date tried to kiss her or make sexual moves on her. In Kyra’s mind, kissing is reserved for parents! Her sexual innocence is still very real to the point of being disgusted [her word] by the dirty dancing, the making out, and the kissing that she did observe among other students. She was upset by the smell of pot at the dance; yes, she is well aware of the dangers of pot due to life awareness lessons taught at home. When disciplined, she is unusually contrite.

Now let’s look at Kyra’s normal side. She certainly knows how to complain when inconvenienced by little things in life such as having to stand still while big sister attended to her hair, face, and other details prior to Prom. She also grew impatient with being asked to try on the dress time and time again due to alterations made to the dress. She really complained about her sore throat and stomach until the suggestion was made that perhaps she was too sick to go to Prom. Suddenly her ailments flew out the window and all complaining ceased. She is less obedient than hoped for especially as it applies to carrying out her daily chores. She is also a tad lazy about the normal things in life — making her bed, picking up after herself, etc. And she has a mind of her own about things she really knows nothing about [the know-it-all-syndrome]. She also gets a bit sassy when feeling slighted. Other than these things, Kyra is about as easy going, fun loving and loving as any normal person gets.

Let me tell you what Kyra thinks about her disability. She strongly dislikes the word — disability. So do her friends! Here is an actual conversation she had with a friend named Conor.

Conor to Kyra: Do you have a disability?

Kyra to Conor: No, I don’t have any disability. I have Down Syndrome.

Pause

Kyra to Conor: Do you have a disability?

Conor to Kyra: No, I don’t have any either. I have Autism.

Allow me to share one more personal story about Prom night. We invited Kyra’s friend over for supper before Prom. Unlike Kyra, Conor is very engaging and talkative. Besides our immediate family, Kelly (third daughter) also invited several of her friends. All of us were thoroughly entertained by Conor’s regaling. Sarah, the friend of Kelly, remarked afterwards how delighted she was to witness Conor and Kyra. She felt the evening was a special blessing to her; she especially delighted in Conor’s stories. These are our sentiments as well. It seems to us, over the course of eighteen years, that anyone who opens their hearts and wills to God’s Great unknown and unexpected calls with regard to our children, will always find real peace and joy — no matter the circumstances.

Every now and then, Kyra will ask me what is Down Syndrome and I will try and explain it. Then she asks why she has Down Syndrome. I explain that while we can understand the biological part of the syndrome we will never fully understand why she has it — that part remains a mystery much like why was she was born female rather than male, short rather than tall, blond rather than brunette, etc. Yet, because of its mystery, we have to accept it or go crazy trying to find answers to questions that can never be answered. And it is because of and despite her condition, she is perfectly ordered to live in accord with God’s Grand Plan. And that satisfies her until the next time she asks.

Recently Pope Francis blessed a young girl (with a disability) named Zaraiah saying: “Go in peace, for yours is the kingdom in heaven,” [http://www.brownsvilleherald.com/news/local/article_18c3365a-8663-11e4-9faf-ef191097fde2.html] Only two of the Beatitudes end with ‘for yours is the kingdom of heaven.’ These include: (from Matthew 5:3-12): Blessed are the poor in spirit: for theirs is the kingdom of Heaven; Blessed are those who are persecuted for righteousness sake: for theirs is the kingdom of heaven.

Truly, our children with special needs are persecuted. What other unborn population is routinely targeted for extermination besides unborn babies diagnosed with a chromosomal defect? Did you know that upwards of 92% of all women learning that their unborn babies will have Down Syndrome choose to end the pregnancy through abortion? Still, babies are born with disabilities for different reasons and so well-respected doctors and others advocate legislation that would allow infanticide up to six months after a baby is born in hopes of creating disabilities-free societies. They feel that special needs babies become an unnecessary and undue burden on society — economically and socially. [Mothers Forever, Fathers Forever page 257-258] Fortunately, that has not yet come to pass here in the US. However, the Dutch Groningen Protocol allows for the killing of disabled babies after birth as an extension of Netherland’s euthanasia license. So, persecution is in place; we now have to work to restore justice in place of this type of injustice.

Perhaps Pope Francis was recalling the second beatitude [mentioned earlier] when he blessed Zaraiah. Blessed are the poor in spirit for theirs is the kingdom of God. In this beatitude, Jesus was teaching us to adopt a type of spiritual poverty in order that we are able to enter the kingdom of God. This spiritual poverty is the equivalent of the virtue of humility. That virtue allows us to realize and appreciate that we are mere creatures and God alone is Creator. Humility paves the way for obedience — the necessary precursor to knowledge and love of God. Humility also helps reveal to us our own personal sins. Finally, humility is the antidote for Pride which promotes egoism and selfishness while pushing aside faith, hope and charity and selflessness. “God opposes the proud but gives grace to the humble” (James 4:6). So, Pope Francis told Zaraiah to go in peace for yours is the kingdom of heaven! How truly blessed are Zaraiah and Kyra and Conor and Kari and Michael, and all of the other children we know who have one or more condition that mark them as having special needs. They alone have the full assurance of being glorified after this life by God Himself today. They can rest assured that they will see God and receive a special place in the Kingdom of Heaven. And what a blessing for us parents to know that our child will have a special place in heaven after enduring the injustices that creep up here, there and everywhere within their lifetimes.

We feel we have truly been blessed a thousand times over; her siblings feel the same. Is it any easier knowing that Kyra has Down Syndrome? I would be dishonest if I didn’t admit that nearly every day, I still catch myself wondering what she would have looked like without DS. I wonder what she might have achieved. I wonder what she might be like. But those fleeting thoughts have nothing to do with reality and serve no good purpose. The reality is that while DS is not easy to accept, nothing that is really worthwhile in life is ever easy but always worth it — and a thousand times over. Thank you God for the blessings you have bestowed on us in and through each of our children including Kyra.

How would you answer the earlier questions? Here are a few more to think about. What type of support will you give to parents who have just received some bad news about the health status of their unborn baby? [Consider recommending my latest book entitled Mothers Forever, Fathers Forever: Parenting Against the Tide.] How can you continue to support this family after the baby is born? Just how pro-life are you — really? What is your response to someone who tells you about their ninth pregnancy? Do you affirm their openness to children or do you walk away thinking they have too many children? Would you undergo pregnancy testing [including having an ultrasound] just because it's offered or do you refuse, knowing that the results wouldn’t matter anyway? What will you say to someone who mentions to you that their young child was just diagnosed with Autism? What do you say to those fearful of contracting the Zika virus? How do you prove your love for your family?

Blessings to you as we round out the Season of Easter. May the Holy Spirit come upon you and be with you as you navigate parenthood and family life.