You know how some stores have strict and sometimes even nonexistent refund policies? “All Sales Final” posted in the window means, if you plan to shop, you better love what you get and be prepared to stick with it, because there are no take backs.
That’s parenthood, isn’t it? You have a kid and all of a sudden you’re in a situation where, “You get what you get, and you don’t throw a fit.” My special needs son is now ten. And he is my first born. So up until Hayden entered my life a decade ago, I didn’t know anything about even being a parent, let alone a parent to a special needs child.
Now this post isn’t a pity party. (I do have pity parties on rare occasions and the guest list is quite small, reserved seating only for those closest to the madness. In fact, my first pity party was held in the Postpartum unit at St. Luke’s Hospital in Houston in 2007. My mother in law and I were the only attendees and we held the pity party in the hallway while walking the unit, post surgery, trying to prevent blood clots and building up my strength. We took a moment right near the “healthy babies” in the nursery window to bawl our eyes out, right along with the babies, as we thought of how much we wished Hayden was with us instead of in an ICU in the hospital next door.)
I write a lot about how I had no comparison to what “normal” should be when Hayden was born. I count that a blessing. I didn’t know any differently and I just did what needed to be done. However, due to my own blissful ignorance, I have had moments of enlightenment mixed with grief. I remember back when Hayden was about two and half or three, I was by myself visiting a friend who had a child just a few months older than Hayden. This friend and I were seated on her couch and she asked her three year old, “Bring Mommy the phone.” And he did it. Like, he heard her. He processed the request. He used his legs and went over and retrieved the item she needed. And he brought it to her. Just like that! In that moment, I just froze and stared in amazed bewilderment. Is this what kids can do?? Is this what Hayden would do if he could? She didn’t even have to lay out the steps one by one. She didn’t have to give him two choices of which item she needed. She didn’t have to put him on a scooter board, prone, and make sure he was secured so he could pull himself to the item. This was the most amazing thing I had ever seen a kid do!
There was another time, I was out of town for a conference and I stayed the night with some friends of ours who had two kids, probably around the ages of 5 and 1. They had cooked a lovely dinner and the five of us sat down to eat. We each sat in our spot, the kids fed themselves and no one’s oxygen monitor indicated a desaturation, no one needed suctioning; we just sat there and ate. And afterward the kids took a bath and went to sleep. Then there was free time. I do not exaggerate when I say I literally, felt like I was in a resort. No one needed an hour’s worth of treatments before bed, no one needed to have their meds drawn up, there was no troubleshooting of ventilators and concentrators, and after the kids were asleep no one had to prepare tomorrow’s blenderized foods and draw up food bags. It was incredible. And I do not say that to discount parenting typical children who are 5 and 1! That is hard work, too! I have other kids who are typical and I know there are challenges with every child. It’s just that my observations of this family revealed what “normal” would look like.
Even now, as my son is ten and his peers are staying home alone for small amounts of time, my mind is just BLOWN. How is this happening?! Every day that passes, more shots of grief strike at random times when I least expect them. A scroll through my Facebook feed recently revealed nearly the whole 5th grade class went to a sleep away camp together for three days. As all the proud mommas posted pictures of their child’s send off to camp, inside I ached as a knife twisted my heart. I know my son won’t be able to do everything like everyone else his age. (Heck, at this point he homeschools anyway so this particular trip wasn’t even an option for him as he’s not enrolled in that school anymore – but it’s just the principle of the whole matter.) And then my inner voice starts to get frustrated that other moms get to post their pictures while I sit and ponder, “Do they even know how I feel? How hard this is for me? How lucky they are?” It’s like this selfish indignation that occasionally rears its ugly head.
You know, as many “cons” that I could list and dwell on, if I allowed myself to do so, there are more “pros” than I could probably ever count. Yes, I have had to deal with changing diapers and cleaning up poop for a solid decade and counting. I’ve watched my son miss out on events and experiences. I’ve had to neglect my other two typical sons and watch them struggle as they yearn for my attention. I mourn often of what our “normal” family would have looked like and how different things would have been. However, the people we have met on this journey – other special needs moms, Special Ed teachers, precious doctors and nurses, celebrities like Pat Sajak and Vanna White and John Cena, – the experiences we have had as a family like participating in a Make a Wish trip, watching Hayden develop and grow in his own skin and becoming a self proclaimed “VIP”, and developing friendships with people we never would have met like Aaron Watson, Cal Johnson, Kathleen Barkley, our town’s mayor and so many more, are all things I would never want to have missed out on. Mostly, the biggest “pro” to top the list is that we have a true perspective of LIFE. We have a fresh opportunity every single day to live out sacrificial love. I will never look at situations, circumstances, or “stuff” the same way. And that is because I was given Hayden, to be mine.
There’s a Southern Gospel song that I absolutely love whose lyrics speak truth to me. “I Wouldn’t Take Nothin’ for My Journey Now” says,
“I’ve had a lot of heartache and I met a lot of grief and woe
But when I would stumble then I would humble down
And there I’d say, I wouldn’t take nothin’ for my journey now”
This journey isn’t something I would have picked for myself, but it is undoubtedly one I would never trade. The lessons and experiences from this life are priceless, but ultimately, the reason I would never trade it, is because I have grown closer to Jesus BECAUSE of my circumstances. And for that I am so, so grateful to be in this place that is difficult, exhausting, and unfair. It’s in this place that I am humbled to look UP to Him and praise His name for His sovereign plan and for the gift of salvation that He offers to us all. Because of what He has done for us, by dying on the cross, we can all have hope of eternity with Him.
“That is why we never give up. Though our bodies are dying, our spirits are being renewed every day. For our present troubles are quite small and won’t last very long. Yet they produce for us an immeasurably great glory that will last FOREVER! So we don’t look at the troubles we can see right now; rather, we look forward to what we have not yet seen. For the troubles we see will soon be over, but the joys to come will last forever.” 2 Corinthians 4:16-18
It’s impossible for me to read those words and not tear up. God is so gracious to have given us Jesus to make a way for us to have hope. And so during my circumstances, that I wasn’t wise enough to even know I needed, I look to Him and am eager for an eternity with Him. I trust Him completely and I know that none of this world is about me – it is about HIM and spreading God’s glory throughout all of the world. I am incredibly honored and blessed that we get to do just that in the even tiniest way, by using our situation to continue to give glory to God.
If you don’t have that relationship with Jesus, or if you have questions about how to develop such a relationship and feel secure in your eternity, as always, please reach out to me or a local church. My contact information can be found under the “About” tab on this blog.
I’ll sum up with this line from a friend of Hayden’s, Aaron Watson. “No it won’t all go the way that it should, but I know the heart of life is good.”