How are we doing? That seems to be the question lately from everyone.
Well I could give you my tough girl answer and say "It's all good. We'll find a way." And quite frankly, I tell myself that often because I don't know another way to get through the day. You have to remain hopeful, right? Well I try, I really do. But it sure is getting harder and harder these days.
Here I am on a Saturday night filling out more government paperwork, while also running in and out of Max's room because his oxygen level keeps dropping. Not a rarity in our house, but I suppose I am just not feeling as emotionally strong to handle it tonight.
I am angry. I am frustrated. I am scared for next week, next month and next year. How am I going to make this work?
I don't understand how we got to this point. A few years ago I was building our businesses to great success. I worked day and night to ensure long term financial stability so that we would be ready to have a family. I did everything you are supposed to do.
Yet...here I am today. Now because of marrying the wrong man and giving birth to a child with special needs, I am completely crushed financially. Is this really how the system is supposed to work? Seriously?
1) How in the world is the mother the only responsible party for the child? I am astounded by the court's ruling in our divorce...truly astounded. (That's putting it mildly.) Is that really how our nation views the importance of children? And if I cannot take care of him (which is the financial situation they have put me in), what do they want to happen to Maxwell? Or does anyone even care? Here is this sweet lil' boy who fought for his life and now fights each and every day to accomplish the simplest of milestones. He truly is a miracle. Shouldn't HE be the priority here?
2) And why isn't the system more supportive to families with special needs? As my friend Sarah has frequently commented, why are we punished for giving birth to "less than genetically perfect" children? If those in power walked one day in our shoes, they would certainly have a different viewpoint.
While we certainly feel honored to be the chosen parents of these amazing, unique children, we also have an excessive amount of emotional, physical, and financial stress on a daily basis.
Being a parent of any child is demanding, no question. But throw in constant medical appointments, medications, treatments, daily therapy appointments, research and intense home therapy...and that is a recipe for stress, exhaustion and frustration. On top of all that, the family experiences major financial concerns because one parent must stay home to manage all of this craziness. (And what in the world should a single parent do?)
Oh and let's not forget that anytime you have a moment to think (usually driving to/from the various appointments), your mind is racing about "Am I doing enough? Have I researched all the new therapies? Are we missing something? Should I push/not push for that surgery, that specialist, that medication? Will my child ever speak/walk/live independently? What will happen to my child if something happens to me? Who will take on this responsibility?"
This is the life of a family with a special needs child...especially a child with developmental AND medical concerns.
I totally get that life isn't always fair, and I am completely ok with that. But come on, is this the best that we can do? When someone is in desperate need...at no fault of their own, do we simply let them fend for themselves? Do we not have a role in helping one another? And what role does our government play? I certainly don't have all the answers, I just know something needs to change.
In the past few weeks, I have become quite familiar with the "system," and it is frightening. The lack of support and amount of bureaucracy is ludicrous. It has been an incredibly humiliating and humbling experience, and it has certainly changed me forever. I don't want to become a bitter person, but I'll be honest...it is hard to remain positive when you feel the world is crumbling around you.
I see this stress happening to so many other families with children with special needs. It is incredibly frustrating. Again, WHY should families basically be punished for having "less than genetically perfect" children? Shouldn't we be lifting them up and supporting them in every way? I am so proud of what my fellow special needs families have accomplished with their children...but should their journey be so difficult?
So that is my long answer to the short question of "how are you doing." I am frustrated and worried for the future. I am angry and disappointed that the court didn't treat us fairly in the divorce. I am upset with the system and the lack of support. But most importantly, I am trying to focus on finding answers to the very complicated question..."how in the world am I going to possibly make this all work?"