and there are no grapes on the vines,
though the olive crop fails
and the fields produce no food,
though there are no sheep in the pen
I will be joyful in God my Savior.
It's easy to look at many of the circumstances involved with raising children with special needs and feel heavily burdened. No doubt, it is definitely hard. However, there are precious things that we will enjoy in our journey that many other families will not.
The first blessing that came into our family when a chronic diagnosis arrived on our doorstep was the awareness of how precious life is. When we consider the simple act of breathing, or nervous system function or our blood clotting, which the rest of the world seems to take for granted, we know first hand the complex miracle God has created in every human body. And every day we have with the ones we love is a gift.
Another blessing to our family has been the immense gift of perspective. We don't sweat the small stuff in quite the same way as others do. God has been with us before and He will be with us again as we press on. For example, hospital stays for life-threatening bleeds and appointments that last for hours or even series of days make those quick visits a breeze. During a recent visit for a camp check-up, the nurse was apologizing for the bouncing back-and-forth between two exam rooms for an hour to get two of my children's visits completed. I assured her, "Honey, our last doctor's appointment at Children's Hospital was 5 hours long. This is nothing." Our family tends to see that things could be much worse than what we are enduring because of the big-picture world in which we live.
Compassion is a blessing that has been poured out on us when we are struggling. We have come to know some of the most terrific people in our lives through our most challenging times of adjusting to new IEPs or medical battles the kids are facing. A kind word, a loving hug, some unexpected time to recharge our batteries when we least expected it are all ways people have been the hands and feet of Jesus to us. Next week, through the kindness of donors we will never meet, our kids will be going to hemophilia camp for a week on scholarships provided by local foundations. Their excitement can hardly be contained. And I am so very grateful to see the unique experience that they come home and share with us in their camp stories when we pick them up.
Excuse me if this seems braggadocious, but my children, in turn, have become some of the most compassionate people I know. Because they live with more than the average life challenges, they always seem to have their "radars on" for those who are suffering. They have an awareness of people who they think may be on the autism spectrum or have cognitive diagnoses. If they hear someone is in a hospital or has another type of trial, they are the first to encourage prayer and ask for an update on their status. At the same time, they see the person inside, not the impaired wrapper that the person is living with. Wheelchairs, walkers and the like don't intimidate them. And they are the first to chastise any of their buddies at school who would dare to use the "R" word.
Along those same lines, each of our children has become an engaged US citizen through their involvement in legislative advocacy, especially for those with bleeding disorders. They understand the implications of certain laws greater than most adults do. And my eldest child had the great privilege of advocating for a federal law that she got to see passed, shortly after we had been in Washington, DC. It is truly intriguing to see them form their own opinions on state and national policy at their young age.
My children also have an eternal perspective that many adults do not have. While they each have a solid faith, I find myself most confounded by the depth of thought that my youngest child with serious social deficits, ADHD, SPD, asthma and severe allergies shares. As with every other thought in her world, you never know what is going to come out of her mouth at the strangest of times. But when she shares her thoughts on faith and eternity, it always takes my breath away because I know she walks closely with the Lord, beyond what I can perceive.
I could go on and on about how blessed I feel parenting our three children. The goodness God has poured out upon our lives never ends. Sometimes, words escape me as I am in awe of the unexpected joy I am privileged to witness.
The simple fact is that we are all a product of our circumstances. And how we respond to those circumstances shapes us into the individuals we become. The goal of my husband and myself has always been to raise kids who love life and become the best they can be personally, whatever that may look like. To our joy and surprise, they each are funny, energetic and creative people who are poised to become the leaders of tomorrow.
Does that mean that they do not endure anguish and trials that weigh them down? Certainly not! And our last post sought to share some of those nuances for those who lack empathy. Despite our joy and blessings, life is frequently still very hard. Our family, our children will always need a bit more support, understanding and compassion than the typical person.
The opportunity to proclaim, "We are so very blessed," in the midst of our trials is what we hope will point other people to the Source of our joy in the storm. The Holy Spirit alone is the one who has enabled us to see the half-full part of the glass, diminishing the rather human tendency to fixate on the half-empty part with a huge chip on our shoulder. While we struggle financially, the joy our Savior has poured into us makes us feel richer than the millionaires that surround us who have not faced the same.
It is a fine line sharing the reality of this life we live with children who have medical, emotional or cognitive diagnoses. We want others to gain acceptance and compassion by hearing what we endure while we still conveying our positive gratitude. With God's help, may we all find that balance in reaching others, not oversimplifying or downplaying and at the same time, not hesitating to praise the One who makes this a beautiful life with these precious children.
PRAY: Every good and perfect gift is from you, Father! I never would have chosen to have a child with special needs prior to becoming a parent. But You have shown me greater joy in the midst of our circumstances. Thank You for the precious child(ren) You have blessed me with and the life You have given us together. Only You can take something difficult and make it so beautiful!