90 days

Today MJ went for his 90 day post-op MRI. The first two scans he had in January there were so many unknowns. Part of me feels those were easier because we didn’t know what (if anything) would be found and we had a sense of hope that there would be nothing. Now it is worse knowing there is something damaging your child’s body and praying it has somehow improved. This is his third scan and it was a tough one for all of us - he is getting weary of it. He hates the tape they put on him for I.V.’s and bandages; he can’t stand the smells. He no longer gets “excited” about going to his “hospital with the hand on it”. How can I blame him? Like his father and me, I am sure it brought back a flood of emotions walking those halls in that hospital again today.

The scan today was tough for so many reasons. We no longer were the family in the waiting room with the hope that nothing would be found. We know what’s in there. We know what it has done and what it could keep doing to him. We know this is a chronic condition that he will live with, and will need to be monitored. The reality of that really settled in today. MJ’s brain surgery in February was just the beginning of his Chiari and Syringomyelia journey.

As we were discussing tomorrow’s schedule with MJ (our nightly routine) and we told him we are going back to the surgeon tomorrow for a checkup and to see his pictures – he got tears in his eyes and his little lip quivered. “Mommy – can I stop getting the pictures and going there? I don’t like that.” Seeing that lip quiver and tears well up just killed me inside.

Tomorrow will be the next steps of our journey. Results that will tell us how successful MJ’s surgery was and how closely we will need to monitor his condition going forward.

Thanks for sticking with us through this continued journey.