The Weight of Glory

Posted: July 12, 2011 in Uncategorized

Today is my wife’s birthday. She is an incredible women of faith who lays down her life everyday to love and serve each of her children as well as her stubborn and forgetful husband. What is she doing for her birthday? She is spending the day in the cardiology clinic at the Children’s Hospital of Eastern Ontario with our three year old daughter. Since her birth, Emma has faced a number of ongoing developmental and medical challenges… her heart being the most significant. Yet through all of this, it has been my privileged to watch my wife care for her. From endless hours at the hospital, to daily battles with her feeding tube, my wife has shown me what it means to love as Christ loved.

This morning I read a letter that reflects a bit of our experience and passion as parents of a special needs child. For years now, we have had a desire to raise awareness of the way God blesses families and whole communities through these very special children. This letter was written to a mother who just found out her unborn baby has ARPKD, a rare and incurable genetic disorder.

Emma,

I am so sorry that you received this news. Please know there are hundreds around you who have been in this same or a very similar position. We know the pain that facing this decision brings you. Many others before you have followed the advice of doctors, family, and friends to terminate such a pregnancy. I understand that the decision they make is almost always out of the highest love for their child and a desire to prevent suffering. I want to be very sensitive to that, but to also encourage you to look from a different point of view.

It seems to be a foregone conclusion in our culture that preventing suffering is the highest goal, but I think we lose sight of the fact that sometimes in our lives the greatest blessings come to us after we have gone through the greatest suffering. I was advised to terminate with two of my ARPKD daughters after their 20 week ultrasounds. The following weeks, months, and years have been difficult and even terrifying, but I am so glad that I did not follow my doctors’ advice. Yes, my daughters have suffered to some degree (though I know not as much as many other ARPKD kids do), but their pain and tears have grown them into strong little girls who do not take life or health for granted, and who know how to be thankful for the little things in life. They are more mature, more wise, more grateful, more loving, than so many other children their age who have always had “perfect” lives.

Children with special needs have a way of blessing and inspiring those around them too, in a way that healthy children never could. I know greater suffering probably lies ahead for our girls as we face esophageal bleeds and organ transplantation, but we have talked these things through with our oldest, and if my seven year old daughter can face these things with courage, then perhaps she doesn’t need to be shielded from the suffering, but only equipped to walk through it. Someday my girls will take the faith and the strength that they learned from their sufferings and use it to inspire and bless all those around them. It would have been great loss for all who know them to have ended their lives early.

I know that this is one of the most sensitive and personal topics. I pray that I do not sound judgmental in any way. I only mean to offer hope.

With love,

Katherine Eby

Thank you Katherine for sharing your heart in this letter and for reminding us all of the many ways God uses suffering to grow us in faith and gratitude. As parents, we are called to be diligent in teaching our children. And yet this letter reminds us that it is often them whom God uses to teach us. This has certainly been our experience. It is also something that is expressed very well in the following video and book…

So we do not lose heart. Though our outer self is wasting away, our inner self is being renewed day by day. For this light momentary affliction is preparing for us an eternal weight of glory beyond all comparison, as we look not to the things that are seen but to the things that are unseen. For the things that are seen are transient, but the things that are unseen are eternal. – 2 Corinthians 4:16-18 (ESV)

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