In All Honesty

Last night my mind wandered off to a place I hadn’t allowed in to go in a long time…I began to think about the far distant future for my Lola. Yesterday Rob, Lola and I went to the Developmental Disability building to fill out an application for a waiver in an effort to make sure Lola is taken care of as she ages. The waiver offers many services for the developmentally disabled such as home assistance, home modification help, entrance to assisted living homes, wheelchairs and much more. The current waiting list is 10 – 12 years as there is no money in the State for these services, but if something were to happen to Rob or I, Lola would sort of be grandfathered into the system if she qualifies. I’m glad we are being proactive as Lola’s parents, but words like “assisted living”, “24 hour care” and “wheelchair” instilled a fear in me. I am well aware it is too soon to tell if Lola will need any of these services, but knowing it could be a possibility frightened me. I began to think about if something happened to Rob or I, who would take care of Lola? Would they understand her as I do? Would they fight for her like I do? Would they be able to calm her like me? Would they make sure she always received her medication? Would they love her like me? All of these crazy thoughts began to consume me and I simply had to let myself give into them. I don’t go there often, but I’m not being fair to myself if I don’t give my own worries and concerns a good thought.

I get emails from all over the world from other parents of special needs babies and they often ask “how do you stay so strong?”. Well I hope this raw and real post shows you that I’m not always as strong as I appear. Just as many of you, I feel vulnerable, scared, worried, angry and uncertain of how I will get through this. I pray that I will be strong enough by the time Lola understands what tears are so she never has to ask “why is mommy crying?”. I can recall the few times I witnessed my own mother cry and the feeling of helplessness for not knowing how to make her better. I know an occasional cry is good for the soul, but my tears seem to be appearing more and more lately and I’m not quite sure why. I’m not crying because I’m actually sad, I think my tears come from the unknown. The fear of what the future will hold for a little girl that did not choose to have the limitations she has. How will she be able to see as she ages? Will she need assistance as she walks? Will she be able to live on her own? Will she date? Will she marry? Will she have kids? The magnitude of fear the unknowns can instill is overwhelming which is precisely why I try not to think that far into the future. But last night, I couldn’t stop myself. I laid still and silent as my mind raced. I don’t know how long this went on, but I prayed for stillness in my mind. I prayed for the strength to live in the now with my healthy, bright and beautiful daughter. To not worry about tomorrow, but to only live for today. Finally my erratic thoughts and my prayers shut off and when I woke this morning, I felt exhausted. The emotional turmoil I had put myself through had wiped me out and all I could think to do was hug my Lola extra tight. The interesting part of my worries is that the truth is I don’t really care if Lola dates, plays sports, marries, has kids or becomes the President of the United States. As parents we put so much pressure on our kids to be the best rather than just to “be”. Neurological disorder or not, I want Lola to enjoy the life she wants to live, not the one I want her to live. Of course, I will always push her to excel in life, but I would rather her excel at things she enjoys.

So in the midst of my mood this morning, I decided I was over Lola’s neurologist. I called Riley and simply asked for a referral to another doctor. We have to wait until Lola’s case is signed off by her current neurologist (awkward right?), but I don’t care. We have waited almost a month to have Lola’s MRI read by a radiologist when we were told it would only be 2- 3 days. That to me is unacceptable. I’m not concerned with what Lola’s diagnosis is although it would be nice to have an idea as to what we’re up against. But I do want a professional that actually gives a damn. Sure Lola may just be another kid with a neurological condition, but she is MY life. She deserves someone willing to go the extra mile for her and she especially deserves someone to have the common courtesy to pick up the phone to explain what the hell it is she is living with every single day. And honestly for selfish reasons, I want someone that is accessible and compassionate. Lola’s neurologist is going to be someone in our life probably for a good part of her childhood which means she deserves the best…end of story. I knew I should have went with my gut in the first place, but I have the tendency to not give anyone the benefit of the doubt when it comes to the care of my daughter. I want everyone to care about her well being as much as I do…is that too much to ask? Probably. But next time I have that inkling that someone is not right for Lola, I’m simply going to follow that mother’s intuition as it has never let me down.

As you can see, I’m not perfect. I have my days just as many of you do. As mother’s of special needs kids, we have to allow ourselves to feel every emotion, but the key is not to wallow in them. For me, my therapy (oddly enough) is sharing my story with all of you. I think of my blog as my diary which is sort of scary as it quickly becomes public knowledge the second I hit “publish”. But I encourage you to do what makes you feel better. Write it down, talk to someone, email someone that understands, hug your baby extra tight, go for a walk, just do something. I know these feelings and thoughts will emerge again, but for now they are getting brushed back under the rug. I don’t like feeling as I did last night for it felt as I was doing an injustice to my daughter, but worrying about her isn’t an injustice… it is simply my right as her mother.

**For the many parents that read this blog, please know I am always here to listen. I welcome your emails of concern, happiness, kid milestones and much more. I am no expert, but I will always be a good listener. I thank you all for listening to me.