Special Needs Parents love our children. Desperately. We are willing to do anything for our child and often find ourselves doing exactly that……anything and everything. We celebrate milestones you may not realize have been achieved. While you may try to stay as far away from my child as possible, I pray every day for more time with him to enjoy the magic he brings to my day and the lessons he teaches me. Yes, you read that right. My medically fragile child with special needs schools me each and every day. He’s often my conduit to my Heavenly Father as I sink to my knees in prayer and work to employ this thing we call faith.
Welcome to the unique life of a Special Needs Parent.
The state of my mood is directly proportional to Parker’s health. One simple word of encouragement from his Pulmonologist can send me over the moon. One word, construed by me as not being positive enough from his cardiologist, can bring me to the depths of despair.
I’m learning the hard way to live in the moment. To be thankful for the now, while having hope for the future. For something that comes so easily for others, trying to learn this has left me emotionally bruised and bloody. It hasn’t done such great things for my physical well being either. The real kicker is that learning this once isn’t enough. I often have to relearn it again and again, ripping open wounds that sometimes seem destined to never heal.
If given the opportunity to go back in time, knowing what I know now, I do it all again. No questions asked. The love outweighs the pain. The joy a secret vintage known only to those who share the unique life of a special needs parent.
I’ve watched as friends have lost their children. I stand by them as their hearts, shattered and un-fixable in this life, and imagine what it would be like to lose Parker. I have to be careful that I don’t live my life with my son in a world of ‘what-if’s’. That is a sure fire way to waste a lifetime of possibilities. And I do believe in the possibilities of Parker’s life.
I refuse to allow my hopes and dreams for Parker to dim and fade. There is this small section of my soul that in my darkest hours roars in a voice that is felt rather than heard, that all will be well. All will be well. I believe this. I hold tightly to this as I continue to work with Parker to learn how to read and do math and to reach out into this vast world around him and store up knowledge and experience like little nuggets of gold.
I give thanks every day for those who believe in the worth and value of my son. Those who offer up hope for his future. Those who share their stories of beating odds and accomplishing goals despite the obstacles. One of my most cherished baby gifts for Parker was an outfit given to him three sizes too big. Just looking at the size gave me hope that Parker would indeed see the day that he would fit into that outfit.
Hope. It’s an integral part of the survival of a parent of a medically fragile child with special needs.
I don’t have the words to express my gratitude to those who have donated to Parker’s future, to those that recognize that raising a child like Parker and providing for his needs often takes more than Reed’s paycheck provides. Those who with non-judging hearts and a desire to see Parker succeed reach out to us in love and prayers.
This too, is often an exceptionally humbling part of the unique life of a special needs parent.
Last week my door opened to find a friend who decided, out of the blue, to bring dinner by. I couldn’t figure out why she thought we needed dinner brought over. When I asked her she simply replied, “You won’t let me do much for you, so I’m bringing dinner over.” Not having to make dinner that night was exactly what I needed and I didn’t even know it. It took one thing off that day’s to do list and gave room for my heart to float a little lighter.
I titled this post the UNIQUE life of a special needs parent partly because each of us with a child with special needs travels their own exclusive road. What brings me to my knees may not even register on another parents radar, and vice versa.
While our journeys are unique, there are also common threads within the special needs community too. I’d love for you to share your heart.