Wednesday, May 7, 2014

A Father's Perspective #williamssyndromeawareness

As this is Williams Syndrome Awareness month, it is my pleasure to get to contribute to Megan’s blog. 

She asked me if I would give a dad’s perspective on raising a child with WS. So here it is.

Shortly after we learned of Nolan’s Williams Syndrome diagnosis, I started focusing on the positive,

or tried to anyway. There were definitely some fears present. How would he interact with others, 

what would a school day look like, to what degree will he be able to function as an individual, etc? All

these questions would come up, but we just tried to take it a day at a time and focus on progress. My

rallying cry was that we would highlight his strengths and just work on and plug away at his weaknesses, 

developmentally speaking. Nolan has a laundry list of positive attributes and character traits that many

people, including myself, could stand to better possess: complete lack of prejudice, contagious joy,

empathy, etc. His weaknesses such as gross motor and fine motor skills and speech were challenges, 

but we were proactive in helping him catch up and we had/have great therapists so we reached a point 

where we were feeling pretty optimistic. Fast forward to today. He still has those great positives and 

more, his gross motor skills are more or less at an age appropriate level, and his speech is light years 

better. BUT, unforeseen challenges have emerged. This was one of our greatest fears when we 

received his diagnosis: the unknown. We are learning what a school day looks like, and it is extremely 

overwhelming. Throughout the day, there is Nolan Jeckyll and Nolan Hyde, and either persona can

appear within seconds of one another. We know there are various contributing factors to his behavior, 

including maturity, being a boy, anxiety that is associated with WS, and distractibility, but we cannot 

figure out what all of his triggers are or how to consistently get Hyde back in the box. It has become 

consuming and draining.

So what’s it like being the father of three awesome kids, one of which happens to have William’s

Syndrome? It is really hard. It is mentally, emotionally, and even physically taxing. I love my children 

so much it hurts. The girls present what I would consider to be typical parenting challenges which can 

be very trying to be sure, but they are really fantastic girls. They easily adapt and adjust. They are great 

kids. I thank God for them. I want Nolan to grow and mature and sometimes just be able blend in. I 

want to protect Nolan from the frustration and odd looks and mistreatment that will inevitably occur in 

a society that largely does not know how to interact with someone that does not fit their expectations. I 

do not want to mask him at all. His persona is part of what makes him so special and awesome, but I do 

want to help him to develop self-control and appropriate social skills.

All that said, other than on the weekends, I just make it home in time each day to sleep. So while I am

emotionally burdened by Nolan’s struggles, Megan is grinding through it daily. My father’s perspective

goes hand in hand with my husband’s perspective. I feel unequipped and helpless in getting Nolan 

through his struggles. At the same time, because of my provider responsibilities, I feel the same in 

my inability to help Megan. As a man, I want to fix things. I want to find the answer, implement the 

solution, and move on. Unfortunately, life, especially raising kids, does not work that way. There are 

too many variables and too many unknowns. Nolan just happens to have several extra of each.

Where am I today? Downtrodden, depressed, angry, worried? Maybe a little of each. Not so much 

depressed; I don’t think that’s really my nature, but I can’t be all positive all the time. Who can?

We’ve established that life is hard, but God has blessed me with a true optimism. I did not realize it

until Nolan’s developmental delays became evident as a baby, but I am truly hopeful and expectant

in all areas of life. God is in control, of that I have zero doubt. It sounds like a cliché, but it isn’t. It is 

a Biblical truth that my whole life rests upon. We don’t always want to hear that when we are going 

through a real trial, but it is important to remember and to grasp ahold of when you can.

I take encouragement from passages like these (my emphasis).

Romans 8:18-21, 18 "For I consider that the sufferings of this present time are not worth comparing with the glory that is to be revealed to us. 19 For the creation waits with eager longing for the revealing of the sons of God.20 For the creation was subjected to futility, not willingly, but because of him who subjected it, in hope 21 that the creation itself will be set free from its bondage to corruption and obtain the freedom of the glory of the children of God."  "28 And we know that for those who love God all things work together for good,[a] for those who are called according to his purpose. 29 For those whom he foreknew he also predestined to be conformed to the image of his Son, in order that he might be the firstborn among many brothers. 30 And those whom he predestined he also called, and those whom he called he also justified, and those whom he justified he also glorified."

The pain and struggle that is involved in raising Nolan is temporary. I am viewing it as an opportunity

to show the resilience of our family and the love of our God. It is so hard, but the rewards are great. 

Nolan blesses us each and every day. We hold fast to and cherish the joyful experiences, and believe me 

there are many.

1 Corinthians 15:57-58  "57 But thanks be to God, who gives us the victory through our Lord Jesus Christ.  58 Therefore, my beloved brothers, be steadfast, immovable, always abounding in the work of the Lord, knowing that in the Lord your labor is not in vain."

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