The first emotion I had to come to grips with is the feeling that my child is the most urgent case around and should get in immediately to be seen. The reality is waiting times exist, it is a good thing when your child can wait. I think oncology is probably the specialty that one gets into within a few days. There is this Mama Bear side that comes out when you feel like your child is threatened and needs protection or help. It takes some time to learn to live with this and not let it alienate everyone who could help you by letting anger demand something a doctor's office cannot give you.
The flip side of this is how to deal with the waiting. There have been so many times that I have had to wait, wait for a much sought for specialist appointment, wait for test results, wait for procedures/surgeries. While you wait emotions and expectations have time to morph and become more than they should be. All your hopes to be able to walk out of the appointment with an answer of some kind, a definitive treatment plan, or a prognosis gets built up during the wait. What usually happens is you walk out with a list of tests to be done, things to look into or even other doctors to visit.
These emotions seem to be the hardest to deal with, the aftermath of a visit.
At first it was pity thinking my child had an unfortunate accident and has some pain and healing to deal with. Then the realization that something isn't right, so you seek out a more refined specialist. This comes with the wait and the expectations and hopes build up. When you get to the visit, you "know" what should be done. Then one x ray changes it all and reveals that so much more is going on. You walk out of the office with a list of other specialties to visit and tests to do. Shell shock. Life has just been flipped upside down. You began to realize something big is going on, just don't know what right now.
The next specialist is supposed to have the answer. He or She doesn't and in fact raises more questions. So much frustration and disappointment.
A test gives an unexpected result out of left field. It really doesn't help when this diagnosis comes with much confusion and misunderstanding from the doctors themselves. Ok we can deal with this even though there is still more to do.
Then an answer begins to emerge from all the craziness. This comes with a treatment plan and prognosis. Hope.
Then the visit that turns it all upside down and blows that answer out of the water. Oh the aftermath, the anger, how dare that doctor decide that all the other answers are wrong!
Off to another very specialized specialist. More waiting. Leave the appointment with more waiting, but hope for an answer after a big conference of specialist doctors. Hope again but more guarded.
That hope is dashed with the answer of a lifelong disease, but manageable. As a bonus a wonderful community is found with others that understand.
Then you begin to see that there are no answers and you just have to wait and see how things will manifest themselves. Wait and see. Waiting with no timeline is a new experience.
Then emotions begin to be recycled. That unexpected result a few months ago begins to assert itself and cause so much pain. That Mama Bear comes back out and you push to get quicker appointments, but when the answer is brain surgery oh the confusion and shock. That is such a big thing.
Some anticipation has a slow resolution. The answer is surgery but recovery takes a long time and the final answer is not seen right away.. Patience is developed.
At this point some ability to handle the swings of special needs brings begins to assert itself and when a new specialist says not to an anticipated treatment, it is a surprise but you can deal with it and life falls into a little bit of a predictable pattern.
I think that is the problem: Predictable. There is no predictability in this life.
Then comes a visit that throws a new emotion into this, confusion. At least it felt new until I just looked back and saw the word confusion already used, though this time is not so much shock All I know is that I know what I walked out with a feeling that while I know the specific recommendations and plans I don't fully understand it. I need time to think about it and digest the information I received.
This all leads itself how do I prepare for future visits? Will next weeks visit bring a surprise or an in and out, see you next year?
Philippians 4
6 Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.
7 And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus.
