Sunday, May 20, 2012

Holding On: When it's all you can do

Our family has had a rough past year and a half, but the last month has been extremely difficult and honestly has brought me to my breaking point.  We came back from our amazing time in Turkey only to be faced with incredible challenges with Joshua, our oldest who has been struggling with his Autism and related mental health issues since February when he had to be hospitalized at that point.  We have had multiple medical consults, behavioral specialist consults, medication adjustments, and meetings with our pastor, but yet things continue to spiral out of hand and we find ourselves desperately at a loss with how to deal with our son.  Our biggest fear is that we are going to lose him because of his behavior/anger issues.

I had a repeat brain MRI the week I returned to the States which showed that my brain lesion has grown slightly and is now lighting up with the contrast dye.  In addition, two new spots are forming in my frontal lobe of my brain.  My neurologist is convinced I have Multiple Sclerosis (MS) even though I don't have any other symptoms of the disease and had a negative lumbar puncture back in November when I was hospitalized.  She is sending me to a MS specialist at Jefferson University Hospital who I will see July 16 to get his take on the whole situation.  Even if it is MS, it does not explain my constant headaches/migraines since Nov. 1 which have prevented me from being pain-free longer than 4-5 hours on a good day.  My neurologist has basically given up on trying to find an explanation for the headaches and is content to keep me on the seizure medicine I have been on since January which causes neuropathy symptoms that I have to live with and that become intolerable if I take a higher dose to try to be pain-free from headache pain.

Then, there's sweet David who has been struggling physically once again the past few months, and has already had 2 serious infections since we returned back to the States.  He was infection-free from November-February, which is the longest stretch of time he has gone in his whole entire life.  Since then, he has had 5 bacterial infections with this last one giving us quite the scare this past week.  He had a really high fever (he went as high as 104.2) for 5 1/2 days straight despite starting an antibiotic the second day for tonsillitis.  He had been put on a prophylactic antibiotic the week before because of his increase of infections lately and had some blood work done to see how his antibody levels were doing.  Even with the prophylactic antibiotic, David came down with the tonsillitis, so his doctor did a throat culture just to make sure it was a bacterial infection.  It was a good thing he did that because when his fever persisted, his doctor sent him to the ER this past Thursday for a full work-up.  While we were in the ER, David's doctor got the throat culture results back showing his infection was from heavy growth of staph aureus (bacteria) which was sensitive to a different type of antibiotic.  So, David was discharged from the ER on the new antibiotic, and finally his fever cycle broke.  However, because he has had tonsillitis 9 times since last Spring, he now has to have a tonsillectomy (his 3rd surgery in his 5 years of life).  We meet with his ENT on Wednesday to schedule the surgery.

Tim is left to be the strong one to hold the rest of us together.  We are thankful he is strong and healthy. 

Needless to say, with everything going on, we have been feeling like we are constantly fighting to keep our heads above water, and we are weakening fast.  I feel like I have entered a spiritual desert.  I know God is with me.  His strength and grace are what carry me through each day and have allowed me to survive the past few weeks.  However, I am getting a first-hand experience of what David must has felt those times he wrote the Psalms that cry out to God asking Him where He is or why He had forsaken him.  Each time, David came around and acknowledged God's presence, but the feelings of God being distant were very real.  I totally understand how that feels.  My heart is hurting so much for my boys and their struggles that I find myself at a total loss for words when it comes to prayer.  I am glad that God knows my heart and my thoughts before I think them or say them.  I am glad that feeling God is distant is just that - a feeling.  I am glad that I know that God has not truly forsaken me and that God is with me each painful step of the way. 

I am reminded of the poem, "Footprints in the Sand" where when only one set of footsteps was seen it was because God was carrying the author.  I am definitely too weak to walk this path any longer on my own.  I am totally relying on God to carry me the rest of the way.  I look forward to the day when He gently lowers me back to the ground placing me and leading me beside the still waters (Psalm 23:2).

1 comment:

  1. Christine, I don't even know what to say. No one family should have to face so much. We are praying with you. I will call today to see how I can help.