A few nights ago I was honest with Mark at just how despondent I was feeling. Actually, I sort of just fell on him in a heap of tears. We both admitted to each other that this life-of-special-needs causes us to feel like aliens with two heads, and over the years we have increasingly felt more isolated as a family. Now, don't get me wrong, Mark and I both have many close friends, people that we share many joys and struggles with..but when it comes to feeling anyone can relate to our whole family dynamic...? Not so much. Of course, this is no one's fault. It's just reality.
In all honesty, this reality even hits me in Fragile X circles with other parents and other children with FX. For example, we were supposed to go to the Houston FX Walk in Kingwood last Saturday..but we didn't. Frankly I was sinking as I thought about our experience last year. You see, it's all we can do to coerce Landen to get in the car and try to explain to him where we are driving and why...he's really only agreeable to destinations such as Target, Walmart, or the car wash. Thus the whole drive there is consumed with anxiety and whining. Once we got to the walk last year, Mark had to work with him for thirty minutes just to get him out of the vehicle..I went on to register us and get our T shirts, which of course Landen would not put on. Finally we convinced him to go jump in the bouncy houses they had in the parking lot, and he did that for a little while. But of course he immediately went back to the car...it's a pattern that is repeated over and over in scenarios like this...Mark was forced to go sit in the car with him while I participated in part of the walk, caught up with a few parents, and ate the lunch we had paid for..taking theirs to them in the car. Not exactly the sense of community we were hoping for.
The other piece of this scenario that causes me disappointment is seeing how many of the FX kids are out and about participating in the walk while Landen has barricaded himself in the car! So, basically, we kind of leave these scenarios feeling like...dare i say...losers.
So, back to the scene of my meltdown a few nights ago...I was also feeling guilty for not going to the walk. I so want to participate in and support the efforts of this fairly new support group that has sprung up in Houston. We went so many years with nothing like it here. As Mark and I continued to talk and share, we both named that, in the midst of recent troubles, how grateful we were for what we saw as one really great thing that was going on in our lives...Bethany's new job.
She has been working for my mom in new home sales for a builder for about a month, and really loving it and thriving there. It has given her a great sense of accomplishment and hope for a bright future after many years of her own struggles and trials related to FX. But Monday night that all changed...Mom got a call from the HR department who realized it was against company policy for two relatives to work for the company. So she had to tell Beth the bad news. We have all been sick to our stomach over it. It's been really hard to accept that it's over. And something happened to me when that occurred. It felt like a bright light had been extinguished. I felt a sense of hope immediately disappear in my heart. I was in a free fall.
Then I got angry. "Lord, why?" For now I can see no good reason for this happening to her. It's been so hard to see her have to mourn this loss, and knowing she had done nothing wrong- it was simply company policy. I knew I had to reach out for prayer- through facebook, friends, church. I felt so low that it was almost more out of a spiritual discipline that I asked for prayer, rather than my own faith in those hours. Over the next 48 hours I felt my spirit lifting little by little as many friends prayed for our family. I know there are so many mysteries to life and stretches of this journey that I don't understand. These occasions bring me to a crisis of belief. Will I choose faith and trust in the Lord? Or will I whither away in bitterness and anger, shrouding my heart in cynicism? It is then that I must take notice of all that is good and redeeming in my life, in our home, in our hearts. I've said it before and I choose to say it again...I know that following God cannot be conditional...only staying faithful when the landscape looks exactly the way I think it should. That's. not. faith.
Times like this, especially as Thanksgiving approaches, I remember the gripping lyrics of Nichole Nordeman's song "Gratitude". No single song describes our family's unique faith journey better than this one.
'Cause the earth is dry and needs to drink again
And the sun is high and we are sinking in the shade
Would You send a cloud, thunder long and loud?
Let the sky grow black and send some mercy downSurely You can see that we are thirsty and afraid
But maybe not, not today
Daily bread, give us daily bread