The Next Road Ahead

The past seventeen months have taught me a lot about life and love. I have learned to appreciate Brandt for all that he does and for how hard he has worked to get to where he is. Things that might come natural for others have meant months of therapy, practice, and hard work for Brandt. I have also learned to accept what is and to love Brandt for all that he is. It is too easy to look at other babies younger than Brandt and wish that he could do what they do, but all that negative energy is no good for anyone. I have learned that, though some of the roads less traveled can be scary, no one can fight for my son that way that I can. I can cheer him through life's most memorable moments and calm him through life's never-ending nightmares.

Life is all in what you make of it.

And, though, we have been to hell and back since February, we survived the fight. And, we will continue to fight. That's what we do. We fight, come up for air, and then fight some more. We know no mercy. No battle is too big; no battle too small. We kick ass, take names, and keep pushing onward toward victory. We Battle for Brandt and know no boundaries.

We have spent the past nine months exhausting every effort to provide Brandt with the best possible medical care. He has had 4 MRIs of the complete spine and brain, an EKG and echocardiogram of the heart, over 30 genetic and metabolic blood panels, extensive neurological evaluations, weekly speech and physical therapy sessions, ear tube surgery, multiple hearing tests, asthma/allergy tests.... and you'd think this list would end soon, but it is just beginning.

A couple weeks ago, I mentioned a "congenital birth defect" that needed to be corrected before age 2 (see blog: Scary Secrets). It was hoped that the problem would self-correct during the first six months of life. Unfortunately, that was not the case, and our pediatrician has referred us to a specialist to address this condition.

Part of me is ready to face the problem head-on and just knock it off the list while the other part of me sees another scary road I'll go down alone. Alone. Again. Another tough road. Alone.

And, I'm thinking, it is all a little too overwhelming for me right now. This is bad timing--and I know I can't control when life happens. But with all the stress of a terminally ill family member, it is just not a good time to be dealing with this, too.

In my research, I have found that this congenital defect, depending on severity, can be corrected with either hormone therapy or surgery. And, while I am ready to do whatever I need to do for my son, I fear the road ahead. It's hard not to see the roads we've already been down of appointment after appointment--with cancellation after cancellation for illness--and not see myself heading down those same endless, merciless roads again. I feel so tired, drained, overwhelmed, broken--and I'm hardly treading water.

Yet, I just have to trust that God will be there to guide me down the next road ahead. After all, what choice do I have?!?

Psalm 56:3 , 4 “What time I am afraid, I will trust in thee. In God I will praise his word, in God I have put my trust; I will not fear what flesh can do unto me