We received a "truth in lending" statement in the mail today. We are refinancing our home loan to get a better interest rate. I remember our first home loan. That first "truth in lending" statement made me cry. I was overwhelmed with the reality that a $60,000 loan would cost such an incredible amount after 30 years of paying interest...We have since gone through this process 5 times since that first mortgage 20 years ago. And each time, event though the reality of that disclosure always overwhelms me, the sting of that first time, was clearly the worst.
So, too, in dealing with the disabilities of our children. I remind myself often that our children are just on loan to us from God. They don't come with a truth in lending disclosure. When McKenna was born 18 years ago, Al Gore had just invented the internet :) and there were few ways for us to connect with other families who were raising kids with disabilities. I longed to speak with other families...to find someone else who understood the struggles and challenges we were facing everyday. We found the other parents, sitting in therapy waiting rooms, in the halls at the early childhood special education center, or through mutual friends who made connections for us.
Even now, while the internet can put multiple families at your fingertips who may have a child with the same diagnosis as your child's, it isn't always easy to share the deepest, most raw emotions and struggles. Even now, there are times when I need to know that someone else understands the road I am traveling and is not going to be afraid to share the struggles and challenges that come along this journey.
So, for parents out there who are raising kids with disabilities, here is my "truth in lending" statement for you..the true cost of raising a child with a lifelong disability. This isn't a time when I am going to share with you why all the joys and triumphs that we experience every day. You can read about those things all over this blog...I wouldn't trade my life with anyone else's. This time, I just want to share from my heart...some of the tough stuff in an effort to let you know that you are not alone if you feeling some of the same things.
Here is the truth about parenting a child with a disability:
It's exhausting. All parenting is exhausting at times. We all have experienced it. But, parenting a child with a disability is like riding a roller coaster (keeping in mind I hate roller coasters) while holding a full glass of water...trying not to spill. The emotional toll is great...The physical toll is great...The feeling like the goal I have before me is not attainable is exhausting...sometimes there is no fixing the issue I am facing with my child..and that just makes me sad. I can assemble what seems like the right doctors, the best therapies, the optimal diet and medications when needed, but I can't fix a thing.
It's sad. Sometimes, I look over at my 18 year old daughter, just a glance her way...and I see a glimpse of what she may have been like had she not been profoundly effected by her disability. For just a second, I allow myself to wonder what her senior year of high school would have been like. What college would she be planning to attend? What interests would she have? What would she be passionate about? But, instead, as I look over, I see a little girl in a grown up body...I see a girl proud that she is planning on taking a shower "all by herself" and obsesses about what she will eat next. And it takes everything I have in me not to allow those feelings to overtake me and start sobbing right there where ever I may be..even if it is in the line at Target.
It's maddening. I have been doing this for 18 years. I am tired of the same thing every day. McKenna needs help with all areas of daily living. She thrives on the same thing every day...routine is where her comfort and stability lies. Not me. I need things to change, to improve...and that desire in me must be laid to rest for the sake of my sweet girl. In this particular game of life, no one seems to be playing by the rules...and I can't keep up with it all. And I get tired about talking about the same things every day...I am sick of talking about the weather or the menu at Arby's. Death to self...a little bit every day.
It's humbling. The difficulty of the situation brings out the worst in me. With multiple kids with their own disabilities...their own things that set them off...it is crazy at times to balance out whose needs should be considered first. McKenna is loud and persistent. Both Maisy and McKenna are performing in the same play. I really, really needed Maisy to take a nap before the performance. But, McKenna really, really needed to be reassured over and over again, that yes, indeed, the show was not cancelled again because of the snow. I lost it with McKenna in an effort to get her to just stop screaming...I even mentioned the word "group home" in my rantings which was precisely the worst thing I could have done because now McKenna was so upset and had to perform...she got a migraine and couldn't go on. Humbling...I am terrible at this whole parenting a kid with a disability thing. And it is humbling...
It's lonely. I have lots of friends who also are parents of kids with disabilities and I am so thankful for that. But, the chronic loss that I carry is not easily shared. The joys, the laughs, the tears that come from an upcoming surgery or transition are shared. But, the depth of sorrow, that lies deep within is not often revealed...for fear that others will not understand that the love for my child is not compromised by the negative feelings I hold within. We find each other in the halls at our typical kids Christmas concerts..the other parents are enjoying the concerts and we areWe are often misunderstood by others. Our reactions to what might be going on seem over the top, because we have become skilled at scanning the room for sensory triggers that may just turn a simple lunch into an ugly scene...we seem stressed out, because we are.
It's grueling. The fight to advocate for our kids is grueling and it doesn't let up as they get older... I know they say that we, as parents are the experts on our kids. I understand that and appreciate it when teachers, doctors and others acknowledge our unique role in our kids life. But, truth is, I don't often feel like an expert on anything. I often think I have figured out the rules, and then they change without notice. "He hates loud noises, he doesn't like it when you clap." These are statements I have said about Elijah only to have him respond in the exact opposite way than I had expected. Experts, huh? I don't think so.
It's painful. It hurts to watch my child struggle...to watch him have to be held down to get a flu shot...to experience intense fear of things..like wood, or Dora, or candles...and to not be able to understand why or do a single thing about it. It is painful knowing that as much as my child may want to attain a goal, I know their best is not good enough for this world's standards. I hate to watch them hurting..physically, emotionally, spiritually. It really hurts and I wish it got easier.
It's overwhelming. If disability was the only ball that I was juggling in the air, I'd still be overwhelmed. But it's not, and the balls just keep getting launched my way and somehow I am suppose to keep them all from crashing down. But, the truth is, the balls don't crash, they bounce. And often, I have to accept the fact that I can't do it all..and the balls are going to bounce once in awhile...and I will catch them again..and it will be okay. The challenge is figuring out which balls are worth catching again and which ones are better left bouncing off into the background of our lives.
It's scary. Our kids are so vulnerable..how can we be expected as parents to trust the bus drivers, the paras, or the teachers with our child who can not defend themselves or who can not tell us what it is that may be happening? The fear can be suffocating if we let it. And the statistics don't give us any reassurance... And then there are the thoughts of who is going to take care my kids when we die? The stress takes a toll on our health...and yet, how are we suppose to find balance in this life...when our child with a disability tips the scale so far off of center so often? There is so much fear to wrestle with.
It's just plain ugly sometimes...really it is. McKenna has barfed on the bakery counter, and in a packed church during a funeral, and even yelled "I have a weapon" in the midst of the State fair crowds. She stood up and yelled "I don't like this Church. Take me back to my old Church." when were looking for a new Church home. It's embarrassing and their is no way to blend into the woodwork with most of our kids with disabilities. Whether we want to or not, we are making a statement about disability..and the ugliness of my reactions to things that my kids say or do...those are not the statements I want to make to the general public about my child.
So, I sure don't want to leave you with such a depressing list of struggles. And it's December after all...but the truth, yet again, is that December is often one of the hardest months of the years for us as parents of kids with disabilities. Our kids struggle in December...The routine has changed..the feeling in the air is different...our kids can sense it immediately...and it stresses them out...and yes, it stresses us out. And then we end the month with Christmas..you know, the most wonderful time of the year. But, not for many of us. The family gatherings may be memorable, but not for the reasons we come to expect. We often avoid the gatherings or leave early...all the time, worrying about how we are going to leave before things hit the point of no return.
So, here it is.. the tough stuff of dealing with disability.
If this is your life, you are not alone. There are so many of us out here that understand your struggles...that want to listen to your hurts and fears....So many of us out there who just want you to know, that ..
It's going to be okay..
the cost is great but the reward far greater..
..and it is so worth it.
Phil 3:8 Indeed, I count everything as loss because of the surpassing worth of knowing Christ Jesus my Lord. For his sake I have suffered the loss of all things and count them as rubbish, in order that I may gain Christ.