Thursday, March 22, 2012

When Faith turns into Denial

When does faith turn in to denial? When Mighty Z was born I had faith that God was going to heal her utterly and completely, (I still have faith that He will heal her, but it is different now,) so much so that I refused to believe that she was going to be trached and be on a ventilator. I truly believed that it was going to be a complete miracle and that Mighty would come home happy, healthy, and whole.  I had visions of going from church to church telling people of this mighty miracle.

After Mighty Z was trached, my bubble popped. I went through a time where I felt God had forsaken me.  It says in the Bible that if we have faith as small as a mustard seed and tell a mountain to go throw itself into the sea it will go (Luke 17:6). I felt that I had much more than a mustard seed of faith but God hadn't moved. I realize now that what I had was denial. I mean really, how can you go through thinking you have a healthy baby only then to realize you have a special needs child without denial knocking at your door?

By the time that Mighty Z came home for the first time, she was six months old. I had come to grips with the fact that this was the way it was and that God had not left me, but that he was helping me get through this.  I then started telling people that, only to hear “You have to have faith that  Mighty Z will be healed!  Don't confess that she has CCHS(Congenital Central Hypoventilation Syndrome).”  All the sudden I started to hear denial knock on my door again. I had two choices at that moment: either to stand up to the truth, which was that my baby had this terrible disease, or to deny that there was anything wrong. I chose to stand up to the truth, but in doing so I felt guilty. My guilt was telling me that I had no faith in God, and that this was not the way I was brought up, and how could I turn my back on faith?

Only then I remembered that when God led the Children of Israel to the Promised Land, He had Moses send out spies.  When the spies came back they did not lie and say that there was nobody in their Promised Land-- they stood up and said ‘yes, there are Giants in the land’ and Joshua and Caleb said ‘there are giants in the land but our God will prevail.’ Once I reread that I realized that even though Mighty Z was on a ventilator and according to the doctors would have to bury her before her first birthday, My God would prevail. (CCHS had no test for it at the time of Mighty Z's birth, and nobody in Oklahoma had seen it, so they had no idea what her prognosis was.  Also there was really no support group so we didn't know Mighty Z would be OK.) And my God has prevailed.  Is Mighty Z healed?  No, not yet, but she is off her ventilator during the day, and she is twelve years old going to school every day. I would say that God has led me out of the wilderness.

I have found that God doesn't give children with disabilities to strong people: He gives them to ordinary, everyday people; then He helps the parents to grow stronger through the journey.01 02 12

Monday, March 19, 2012

The mom next door

   I am only human, I read that somewhere lately and so many times I want to scream that out loud. I have been challenged and pushed beyond my limits time and time again . 

Just when I feel like I can't take one more step down this very hard road I have to pick up Mighty Z and take another step. parenting is hard but with Mighty Z it  takes things to another level of fatigue. 

Even if I've gotten a good night's sleep, there is a level of emotional and physical tiredness that is always there, that simply comes from the weight of making sure Mighty Z makes it through another night Hospital and doctors visits and time spent researching and making my doctor read it adds it's own weights as well . 

Sometimes the emotional toll of all of this is so difficult the peaks and valleys always turn on a dime just when you think you are going uphill you are sent for a downward dive without warning.

Don't get me wrong I've grown tremendously as a person, and developed a soft heart and empathy for others in a way I never would have imagined ,and both Mighty Z and La la( my other child) have emulated the growth in me.

 But sometimes I wish to be the mom next door. Not to say that I don't get cranky, my kids drive me crazy, and sometimes I feel like a vacation to an insane asylum sounds fantastic (you get three hots and a cot and If your lucky you even get a nice padded cell).

 But sometimes I just wish to go out to dinner with my husband I know that sounds silly but I feel like all the moms next door get to do that . I still have dreams and aspirations of my own. I sometimes feel those will never happen (WA AA I know!!) I want to travel with my family, I want to start a foundation, I want to get to go to functions... 

Now that I have said all this you ask would I every change the fact that I had Mighty Z? Never!!!!! My life would hollow with out her just the way she is ventilator and all. But still sometimes I wish to be the mom next door just for a day.01 02 12