I over-texted my husband pictures of our thirteen-month-old tonight: First she was eating a meatball; then she was attempting to climb on top of something; then she was on my head, ripping off my glasses. He is working the night shift at the hospital, which means he leaves the house at quarter-to-five p.m. and returns after seven a.m. It is rough when we see him for about an hour a day, so I continuously text him updates on Grace.
These messages are normal enough between parents of wee babes, and I swell with pride with each one. She is feeding herself solid foods; she has pulled herself up and is scaling new heights; she is strong through her core and coordinating herself for maximum destruction of aforementioned glasses (which are already gorilla-glued together, but that is another story).
Grace Harriet, our Gerber baby look-alike daughter, had a stroke when she was in utero. We did not suspect anything that significant (I/we had a healthy, low-risk, full-term pregnancy), but an MRI at eight months showed us otherwise. She has right hemiparesis cerebral palsy, which means she had a stroke before the age of one, and it was on the left side of the brain, which affects the right side of the body. I wrote about our journey and diagnosis here.
Grace has been in therapy since she was seven months old and intensive therapy since almost ten months old (there was a lapse when we moved). Five times a week, she meets with two physical therapists (gross motor), two occupational therapists (fine motor), and a speech therapist (currently as a precaution, as the stroke happened in a language center). Her neurosurgeon said this is the best recipe for success, and he believes Grace’s elastic brain will continue to form new neurons, make new connections, and that she is well on her way to a typical childhood by the time she is five or six years old.
Nothing, however, is guaranteed—except the imagination of the child’s parents. We look for potential and hope beyond sight seen. When we first heard her diagnosis, we were told she might not crawl because “hemis” have a really hard time with that kind of coordination. We encouraged her anyways: She scooted in July, army-crawled in August, and extended-arm crawled in September. As of November, she has “exceeded” expectations. That is the progress I believe in.
Her therapists rave about her crawling and how awesome she is at “weight bearing” on her right side. And is not that what we strive for in this life— to bear the weight of glory?
“For it is all for your sake, so that as grace extends to more and more people it may increase thanksgiving, to the glory of God. So we do not lose heart. Though our outer nature is wasting away, our inner nature is being renewed every day. For this slight momentary affliction is preparing for us an eternal weight of glory beyond all comparison, because 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 4:15-18)
“Hard” is not the standard by which we should judge our life. Easy is not a virtue as much as it can be a pathway. It is worthwhile to live out the divine love in our fallenness because love is good, love is true, love is beautiful. Love can make the road harder, and it can also make the road purposeful. Parenting in love is imagining beyond reality–not in a delusional way, but a hopeful way, a possible way.
Parents with children who have special needs (“children” should always go before the “special needs”) must see beyond the daily frustrations, past other children meeting milestones, and relish the achievements of the individual. By educating themselves on developmental trials and stages, parents are able to see a wider picture of what their child is doing, and where their child is going. Some children will not progress at the same rate as Grace, even with help. This is a different kind of trial. Some children do not have a clear diagnosis—another hurdle. Whatever the circumstances, parents must be their child’s biggest supporter. There is nothing outside therapy can achieve if parents are not in the forefront of teaching, loving, and playing with their child.
This is not a time for theories or to bemoan your parental lot that you have to try harder; your child has to try the hardest. This is a time of action. This is the time to support other parents (and be supported), to smile at the day and love your child. Love through words, love through actions. Paralyzing fear or laziness has no place in the day of us parents whose children are fueled by that compassion and zeal.
Even when she fusses, we have learned to push Grace a little harder to see what she can do. I have learned how to stretch my daughter and how to massage her. I myself have been stretched beyond my comfort zone. I have had to overcome my own fear of not being the best thing for my daughter. But a therapist cannot encourage, love, and teach my daughter the way I can, every day. I am the one who feeds her, changes her, takes her on errands. I soothe her, sing to her, pray with her, and read to her. We smile, laugh, and have fun together. She was recently given (washable) crayons and loves to draw. She holds two or three at a time and shows them off to me.
I relish it all.
Fear is what faces parents of children with special needs, and it is love, education, and imagination that combats the negativity, condescension, and ignorance. The diagnosis—even one as positive as Grace’s—is scary, period. These parents need empathy: Ask how you can help and support them. Do not “pity” them or the child; do not play M.D. and make suggestions as to “what happened.” I do not pity my child; she is beautiful, vivacious, sassy, adventurous, and loving. Her stubbornness is what propels her to success. And please, do not ever say that “you are so sorry” or “you are devastated”—because Grace has already given me more than I could ever give back to her. Her very life changed my whole world. I struggle telling people about Grace’s diagnosis because I cannot stand to hear people express the idea that Grace is worse off than other babies.
Becoming a parent is a different kind of choice than becoming a spouse: One does not meet the person first and then decide whether this person is worth tethering yourself to. The child is created through conjugal love. Openness to life is an innate part of the most meaningful form of consent between spouses.
It is love that tells us we do not give up on our child or “try again” for a better model. If we cannot be grateful for the gifts we are given, then we lose perspective on what matters in life. What happens by wishing away hardship from our children or ourselves? We lose our virtue, which is formed out of habit. Patience is for the times we are frustrated; kindness is for the times we are irritated; trust is for when we cannot know for certain.
Few parents can say that raising a child is the easiest thing in their life. For parents with children with special needs, physical or mental, there will be even more challenges. Those challenges can be met, and accepted, if you, the parent, receive the grace of knowing your child beyond the naked eye’s weak sight. Providing “the best for your child” is really the act of giving what you already have: yourself and your love.
Books on the topic of this essay may be found in The Imaginative Conservative Bookstore.