Personally, when things are at their worst, I put my head down and concentrate on just putting one foot in front of the other. Sometimes thinking further than that can be too overwhelming. Most of the time as special needs parents, we put on a brave face, and go out into the world with our heads held high. Many of us know as we step out the door, that despite their best efforts, our children will often fail to meet your expectations.We know we have no choice but to put our kids out there anyway, and hope you find it in you to be kind, and understanding to them. We pray you won't step on our children's tender little hearts when you let your disapproval show. We cross our fingers, and hope our kids will miss the stares, and the occasional rude comments. We pray you will treat our children like you would want to be treated, if the situation were reversed.
We love our children with all our hearts, and feel truly blessed by their presence in our lives. We aren't just saying that to make it sound better. It is the honest truth. Many of us have come to see that special needs kids have an important role to play in this world. Every time a special needs child is born, there is an opportunity for the true nature of humanity to be revealed. It is revealed in the way we treat that child. Their vulnerability brings out, and into focus both the best and the worst of us.
All parents are protective, and special needs parents are even more so, because we see how difficult it is for our kids as they try to make their way through a world built by typical people, for typical people. Many of us have nervously paced hospital waiting rooms, after entrusting our precious child's life into the hands of a surgeon. Some of us have sat at the bedside, unsure if our child would live though the night. Some of us have seen the cruelty people can inflict on those who are different. We have borne witness to the hurt in our children's eyes, when others have ignored, mistreated, or hurt them. We have prayed for miracles that sometimes did, and sometimes did not come. We have grieved for our children, for the extra difficulties they face, and for the injustice of their struggles.
|Morgan nearly died twice just hours before |
this picture was taken.
|By the time Morgan was 1 month old, still 2 1/2 months |
away from her original due date, she had already endured
a life threatening brain bleed, and two surgeries.
We hold our breath, waiting to see if our kids will ever do the kinds of things you take for granted. Will my child ever sit up, crawl, take a single step, or run? Will they ever speak their first word, ask a question, or be able to say "I love you too?" Will they ever be able to eat by mouth, or be potty trained, much less graduate from high school, or ever hold a job? Is love, and marriage too much to hope for my child?
We throw away the "What to Expect" books, and tearfully celebrate every tiny, yet miraculous milestone our children achieve. We do so without focusing on how late it came. We find ourselves staring in amazement at how easily a typical child does things, and wonder to ourselves how it is you miss the everyday miracles in your own life.
|At 6 1/2 months old, Morgan could lift her head.|
We don't want, or need your pity, but your understanding would be nice. Instead of staring at my child, try saying hello. Instead of shaking your head and saying, "I don't know how you do it," offer your help. We'll likely turn you down, but will be grateful for the offer.
Special needs parents are just like all parents, except we usually have to work harder, go further, and worry more. We have all the same hopes and fears for our children that everyone has, but for us, the hope is harder to come by, and what we fear is sometimes more more likely to come to pass. We did not chose this very challenging path, but giving up is just not an option. We negotiate the best we can through the potential pit falls of denial, self pity, anger, ignorance, discrimination, and our sometimes shaken faith. We have had to come to terms with the challenges we face. After all, what other choice did we have?
We hope you won't judge us too harshly if we stumble, if you get a glimpse of a short lived pity party, or if our grief occasionally slips out of our eyes and down our face. If we perceive things differently than you do, it is because our eyes that have seen things we didn't want to, our ears have heard the most difficult of news, our hearts have ached over things we could not change, our faith has been painfully stretched, and our feet have had to walk the extra mile. Those experiences tend to change ones perspective.
You think we are brave. We feel terrified. You think we are strong. We feel weak. You think we are tireless. We push ourselves beyond exhaustion. You wonder how do we do it. We are not always sure we can. We just do what anyone would do, the best we can. We want you to understand, for the most part, we are no different from you. We are exactly who you would be, if only you walked in our shoes. We would ask that you not judge us too harshly, because we are the same as you, only we've been asked to walk a different path.
To the special needs parents who read this, I would like to invite you to join my facebook support group for special needs parents:
"Loving a Miracle - Special Parents Supporting Each Other."
This is the original support group, and all content is open to the general public.
There is a closed group, for those of you who would like to post things outside of the view of the general public:
"Loving a Miracle - The Special Parent's Safe Zone."
There is also a public PAGE. This is where I post information and links that I think are helpful to special needs parents.
Permission to repost/reprint: If you would like to obtain permission to repost or reprint this post, please send me an email to firstname.lastname@example.org. Thank you.
- Kristina Smith Blizzard