It’s been over eight years since I’ve joined this special needs club. Seriously? I wouldn’t trade it for the world. Yes, there have been hard times. Yes, there have been stressful times and some times when the fear has seemed overwhelming.
Yet even with all of that I can look you in the eye and tell you that the good has far, far, far outweighed the bad.
If I could go back 8.5 years, and knowing all that I know now, have the decision to be Parker’s Mama, I would. No hesitation. No needing to think about it.
But because I’ve been a part of this club for so long , I understand a few things. I understand what would make having a child with special needs much easier. I’d like to share a few of them with you:
For the days when you are too exhausted and overwhelmed to even know what to pray for, how fantastic would it be to simply look over at your Angel and without a word uttered be able to share your heart and know that your Angel will be on their way to plead in your behalf until you are able to think straight again.
About 5 minutes after the cord is cut and they lay that baby on your chest……or whisk them away to the Level II NICU…..there should be a light tap at you door and in should walk your new maid. Because you are about to be bombarded with more information than one brain can possibly hold, knowing that your home will be clean and dinners on the table would go far in allowing you to focus on what it is going to take to keep your kid alive.
A Medical Bank Account:
Notice I didn’t type ‘suddenly become a millionaire’ or something like that. It’s not about being able to go out and buy the latest bling. I’m talking about a bank account that can only be accessed after your insurance company turns you down for the zillionth time for something your kid needs to keep breathing, or even something that would increase the quality of your kid’s life by increasing his physical abilities. I believe there is a huge relationship between the mind and body.
Good Friends and Neighbors:
Friends that even after seeing the hole your kid breathes through and the tube your kid eats through, still believes that his life is worth every bit as much as the life of their kids. Friends and neighbors that support you when you can’t take your child to church because his health is too fragile. Friends and neighbors who understand that this is the time of your life when your calling is keeping your son alive and the rest of your family together. Friends willing to drop by with a Diet Coke. Friends willing to drop a card in the mail, or make a quick phone call.
I named this blog Praying For Parker, because I believe in the power of prayer. When people offer up prayers in our behalf we can actually feel them. Prayers for peace. Prayers for the doctors to have the wisdom to know what best to do to keep Parker healthy. Prayers to banish the fear. Prayers to ask for us to be able to hear the whisperings of the Still Small Voice. The value of a heart felt prayer, uttered with true faith and desire is priceless.
Okay. There they are. My ideas of what every medically fragile kid with special needs should come with. What are your ideas? What do you wish your child with special needs had come with that would have made things much easier?
Finally, I think it’s an extra blessing if your child with special needs comes with a sister who thinks he hung the moon. I know the Blue Eyed Girl has made Parker’s live so much sweeter.
PS: Speaking of prayers, Parker has his Trach/Vent clinic on Wednesday. We’ll also be redoing his last round of blood work. Your prayers for his blood work to come back looking awesome are greatly appreciated.