Well it's been a while since I've wrote my thoughts down here. It's been several weeks of studying, learning and observing. As a couple, we are trying to prepare ourselves for what lies ahead. We have learned that we can never prepare ourselves emotionally for the loss which is inevitable. Yet, we feel we are to be prepared (as much as possible) to deal with our children as they will also be called to carry a heavy weight on their shoulders. The girls have noticed things lately with Jacob and thankfully they have been understanding and patient, yet, sometimes quiet, sometimes questioning and sometimes confused. We follow in their thoughts. It's mixed emotions and thoughts continually.
It's not that we feel that we are losing our little guy now or we will in
the next week (yet, it remains so uncertain what a week from now will
bring.) It's just that we've seen more negatives in the last week which
always brings with it a boat load of concern.
Jacob is having more unknown fever spikes accompanied with low oxygen
saturation and extremely high heart rate. After 5 or so hours, he's back
to being the normal Jacob. Bizarre.
Yesterday he had a lengthy seizure, which is the first one we've seen of
that nature since last November. Again, the reason why he is experiencing these things remain unclear.
His irritability is through the roof lately. Wow!! I'm really
hoping that it's teething related, but I’m unsure at this point.
A little while ago I was talking with someone from our team and
this is exactly what she said about our situation, considering Jacob's
degenerative brain condition, "The most painful piece is living the
paradox of hoping for improvement or at least some stability for improved
quality of life with the dread of knowing that each new unusual finding is
likely related to his degenerative disease." It sums up what we
live with each and every day.
In amongst all discouragements there are many encouragements along the
way. We have the comfort of knowing that we are upheld on the wings of
prayer on a daily basis. That's powerful! What a blessing.
We have been blessed with a GREAT nursing team! They are an amazing group of nurses! We see the hand of God in this too. After a lengthy rough time, we
are equipped with nurses who are caring, compassionate and knowledgeable.
We also know that God makes no mistakes - Jacob was placed on our path at
the perfect time and for a purpose. This thought is echoed by Dr. Beeke
in his book Portraits of Faith, 'I say to you without any hesitation that
God has never made one mistake with you in your entire life. He has never
given you one cross too many or one cross too few. He has never given you
a cross that did not profit you. What you need is daily, genuine,
submissive faith: faith to say amen to God's ways, faith to receive what he in
his inscrutable wisdom deems fitting to put upon you. You need faith to trust
him with every affliction.' Oh, so much to learn, over and
over again!! Yet, what a pleading ground with an Almighty God!
The Portraits of Faith has been an enormous comfort as we walk down this
path, with no map to guide us. We are simply called to
lean hard on God for every step.