There have been several occasions over the last couple months that have caused me to become so overcome with gratefulness to God for my son that I have wept or had to just pause for a few moments to really thank God over and over for how good He has been to us in this journey with Judah.
One of those moments came when Judah was recovering from anesthesia from his EUA back in February. The nurse relayed how functioning Judah was for a little boy with Sturge Weber and how much "worse off" are some of the SWS kids who they treat. It made me stop and consider that while many of the moms around me don't have to go to the hospital regularly and put their kids under anesthesia, there are other moms who I don't know walking through much more trying hardships with their children, who are laying down their lives in much more obvious ways than I am for my sons and family, and who may grieve daily the loss of their own dreams or expectations for what their little one would become.
Another moment came the day we picked up Judah's glasses. While the temptation existed to complain or worry about the cost of these glasses or the battles ahead to have Judah keep the glasses on his face, the Lord graciously allowed me to see and instead think upon the fact that we could afford these glasses for Judah at all. Yes, it may come at the cost of a weekend away or new clothes, but it doesn't come at the cost of feeding my family or owning a home. I was overcome with gratefulness for the financial means to provide such care to my son. Many around the world simply go blind not just because they can't afford glasses, but they can't even afford to see a doctor in the first place!
Finally, I was undone once again last night after putting the boys to bed with how well Judah is doing in comparison to the prognosis given to us in those first days and weeks of his life. We were told he could have seizures, stokes and be impaired mentally. We watched videos that showed us the dramatic effects a Port Wine Stain can have on a person's appearance and bodily functions. And, while these outcomes still remain a possibility for Judah, I am giving thanks today that God has spared us of many of the more difficult effects of SWS. I am also giving thanks for tomorrow because while I do not know what tomorrow will bring our way (it could be the late onset of seizures or strokes; it could be the rapid growth of Judah's PWS in one of his limbs, etc), I know there will be grace to respond in a way that glorifies God and sustains us.
Thank you for your ongoing prayers. I hope you are assured that they are one of the more significant means of grace to us, specifically in caring for Judah. We are so grateful for you and for your prayers!!