When your child is an infant and they learn to take their very first steps, you are consumed with overwhelming excitement. It’s amazing to watch them learn and grow into such adorable little wobblers! There arms pull up and out to help balance their still shaky steps. You wildly snap photographs that will forever be cherished. Another amazing milestone is accomplished and as a parent we couldn’t be any more proud! However, even with this new-found independence, they are still heavily reliant upon their parents to tend to their needs. You still briskly push them in their comfy stroller as they absorb the world around them. It is full of such hope and promise.
Now imagine never leaving that place. Your child has outgrown the stroller, yet still they wobble and pull their arms up. They are still so intelligent and you full of pride. You still wildly snap pictures and cherish milestones. Only now you wish the entire world could see your child through your eyes. The visions of a parent with a child who has special needs. You wish they could only be there to hear that witty comment, that precious moment, and that excruciating medical appointment. Those arms pulled up are no longer for balance but due to fatigue and deteriorating muscle. Their intelligence is masked by a face that doesn’t readily show their emotions and by the bias of the public of the mobility devices that helps gain them a smidgen of independence. Their milestones are no longer in stride with their peers but on their own time frame. You simply become your own little world.
Our little world is in a state of transition. Strangers now take notice of our five-year old riding in what appears to be just a stroller. The strange look of passer byes doesn’t go unnoticed. We look like indulgent parents with a lazy child. Oh how I wish I could just sit down with them over a nice warm cup of coffee and just talk. Listen to their challenges and share our own. Remind them how easy it is to make snap judgements and how critical it is to try to keep an open mind. There will always be people who will never be able to see past the surface, but if only we could reach out to those that can. If they only knew just how hard both our child and we work to keep everything in order, to make it through each and every day, to make complex medical decisions, to make your child’s educational experience the best it can be. If they could only feel how heart wrenching it is to soothe a child who is having the eleventh tube of blood taken, to carry their sedated child to an MRI machine, to cart them to the doctor yet again, to go through two boxes of tissues a week for months on end, to worry if this infection could turn lethal, to know that you will have to make end of life decisions for your child, to know that your child will not be fulfilling all of those dreams you thought about as you rocked them to sleep as a newborn. Just how do you cope with all of that?
You see my child’s world is still full of hope and promise! He is still soaking up the world around him. I just still have to tend to all of his needs. He will always need my help using the restroom, to shower, to prepare his meals, and to eat. He will not be afforded the same level of independence as his peers, but that by no means will diminish the meaningfulness of his life, the vibrance of his soul, and his need for love and acceptance. We cope every single day differently. There is no magical formula on how to raise a child with a terminal condition. There is not a single day that goes by that we don’t notice our son’s extra needs. They change from day-to-day, and we have to be cognizant of his ataxia, tremors, fevers, food intake, and numerous medications. However, that doesn’t mean that every day it beats us over the head with a hammer. There are days though I wish somebody would, because it can leave you numb, hollow, scared, and so incredibly sad. Those days we just snuggle up real close, take a deep breath, and kiss the top of his curly little head. He is here today. Thank goodness we had one more day. There are days where only tears will do. Then there are others where we are too busy pretending to be snakes, frogs, and kangaroos to worry that we may not be able to do this sometime soon.
Grab ahold of what is good about every day. I will never ask of anybody to not complain about the small things. Just this morning I lamented the fact that I didn’t get that second cup of coffee that I really wanted because while I was busy dealing with a mountain of laundry, the coffee pot turned off. Alas it was cold and I never managed to reheat it. Life is just messy in that way. Just remember what truly matters, give others a bit of grace, take the moral high ground, be the first to offer assistance, be courteous of others, and to be thankful for another day. Oh, and if you are given the chance, smile at a child in a wheelchair, hold the door for a mother who is pushing a large stroller, and try to give some space to those who need to park in handicap spots. They are small things that are free and make a big difference in our world!