I have a confession to make: Though my faith in God and His sovereignty over everything including Lucas and our family is unwavering and has not wavered from even before his life was confirmed, my emotions have suffered a few injuries from the blows we've been thrown. We have said many times that if we did not have absolute faith in God when we met with a genetic counselor and neonatologist at St. Mary's we not only would have been convinced that our sweet child's life was worthless, but our own lives as well and, were we running without Jesus, we might have gone out and hanged ourselves because it was such a dismal and discouraging appointment. (That appointment didn't send me to tears, but rather to my 80lb heavy bag to blow off some of my serious anger with the two women who were so disappointed that, though I defiantly declared that we have no intention of even considering killing our baby, it was "too late for that anyway" -though if late term abortions were legal then as it looks they soon will be, I am certain they would have been pleading with us to follow through.) Still, the barrage of difficult news stated in the clinical and not in faith that there is One who desires good for us and has a plan that we may not understand but He promises to be with us every step of the way has been exhausting to my emotions at times. I have generally taken a day (or two or five) to heal the emotions of disappointment or fear or general sadness with the reminders of the amazing joy that is embodied in our son and that it doesn't matter what some clinician says (I don't care how many degrees hang on their wall!), because they don't know the Truth.
This most recent diagnosis of Lennox-Gastaut Syndrome (LGS) was another such blow for me. When informed that "seizures typically progress and become more severe" and then reading about it and all the things said that seem so terrible to me, I was at an emotional loss for sure. The turning point actually came when I read one definition of LGS that included the word "devastating". That is the same word used by the above mentioned neonatologist. I was suddenly relieved by the gentle reminder that God is still God and all those "smarties" out there do not know Lucas. I resolved to ignore the diagnosis and continue to enjoy my son, still being up on all his medication and clinical stuff as needed, but not believing that a definition could ever define Lucas.
We saw Dr Burris yesterday and I felt it was a great appointment. We are going to continue increasing Lucas' Banzel (the brand-spanking-new drug) to reach the "target dose" We have not noticed much of a change thus far, but improvement is not necessarily expected before the target dose is achieved. (We won't get there for about another 3 weeks and then we are going to give it 3-4 months to make sure it's working.) We discussed Lucas' EEG and briefly LGS. Dr. Burris said that he will almost never use the words Lennox-Gastaut because all that stuff out there trying to define what is basically just a specific pattern on an EEG, onset of seizures before a certain age and various types of seizures is ridiculous. No one can say that those with this diagnosis will have all that stuff that all those "smart people" out there are saying. It gives a new direction for treatment, but it doesn't change who Lucas is and never will. Hearing him express that point of view made me again thank God that we have been blessed with some really great doctors. :)
We had a great start this morning. With Lucas between us, we had him "find" each of us in turn, and again and again when we said "Find Daddy", he went for Marc and when we said "Find Mommy", he went for me. This is a great encouragement, being assured that though his speech is behind (so much more so after the Canadian drug), he is still understanding and is acting on that understanding. I am certain it is just a matter of time before the talking and walking and feeding himself and so many other things become a part of normal every day life. :)
Blessings to you all! Thank you for your continued love and prayers and tolerance of my incessant writing! :)
3 comments:
Reading that was such a blessing Esther.
muchmuchlove and manyprayers to you and family.
You are a most amazing woman of God an Marc a man of God. You are both the sidekicks of Superhero Lucas. You guys continue to be in our prayers and I love seeing the pics and videos of your little guy who works so hard and who brings such smiles to my face. You are a blessing to those around you even the pessimistic smarties will see how wrong they were and will hopefully change their cousel to other parents in the family.
You have handled all this beautifully Esther and God knew all along that you would have the strength and faith to endure. Thanks for being an inspiration to us all. :)
Post a Comment