One of the first things to occur following a storm is looking around and assessing the damage. It is only after the rain has passed and the dust has settled that you can truly gain your bearings. Though the experience of surveying the damage might be one of the most emotional experiences, it will immediately become clear what has been lost forever and with time what might eventually be fixed. There will be tears of joy at what remains intact and is salvageable, but there will also be tears over the storm itself and the loss that is now present. It is only after the dust settles that you realize regardless of where the road takes you, you will continue on the journey that G-d has planned for you equipped with new knowledge under your belt and a new sense of HOPE.
The thing about the aftermath of a personal storm is that it is only then that you are able to analyze every moment, every conversation, and every emotion. It is only as you are replaying the experience in your mind, on repeat, that you fully accept the emotions that you were putting to the side at the time simply so you could survive the storm itself. It is only after you are picking up the pieces of the situation that you can fully understand and come to terms with what just happened. I am a firm believer of allowing myself to feel every emotion. I think it only fair to give each emotion its’ “moment of glory” so to speak, so that I am able to heal and move on. In this case, I am processing just how close we really were to losing the bear last week.
This roller coaster of CDKL5 continues to bring its’ highs and lows. We have been feeling like we have been at rock bottom of this ride for some time waiting for our time to climb steadily back up to the top. For all of those times we thought it could not get worse, it did. We were flying out of control with the wind in our faces, scared out of our minds, hoping the ride would slow down, hoping we could get a hold on the situation. If I had to pinpoint the beginning of our decent it was the Topamax wean, followed by the Gtube consult, followed by the diagnosis of hypsarrhythmia, and culminating at the failed gtube surgery attempt which led to a rescheduled PEG tube placement that coincided with a high dose steroid treatment resulting in an infection that almost took our little bear away.
I knew something was not quite right two weeks ago, I am glad I stuck with my guns and pushed the boundaries of neurotic mother and concerned mother of a child who has special needs. Those two egos tend to battle it out on a regular basis. It is hard to figure out which of those are “right”. I have decided that they are both equally important and I really do not care what level of ridiculousness I have to go in order to be heard, even if that means playing the “my dad is a doctor card, please speak to him”. Drastic times call for drastic measures, and this momma bear is unashamed. This little bear continues to teach me more about myself every day. We are so grateful she is such a fighter and that she still has a purpose left in her physical body. Even though there are times that the “King Solomon mother” part of me wants her pain and suffering to be over, the selfish part of me does not want her to go. It is such an awful position to be in as a mother. If I were someone else reading this, my response would be “I can’t even imagine what she is experiencing, and I don’t even want to”. Being that I am the one in this predicament, my response is “I can’t even imagine what I am experiencing, and I don’t even want to”.
It has been 3 days since the bear is back in our home. She is back to being clobbered by her older siblings, back to being physically present in our daily lives. It has been 3 days since this current nightmare turned into one of the best days of the last year. The perfect storm is clearing up, the winds are settling, and I am left assessing the situation. One of the greatest parts of what follows after the dust settles, is the restored sense of HOPE that you feel knowing that no matter what, even if the ride is not how you planned, with G-d’s help (and some sangria), you will make it.
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