When we stray from the planned path or take a different turn the GPS in our car announces "Route recalculation!" and it plans a slightly different route which takes into account our detour.
I feel like my internal GPS has been saying "Route recalculation" pretty much non-stop since the start of September.
I am a goal oriented person. I can have slight tunnel vision when it comes to achieving what I see as success and being in control of myself and the things and (to an extent) people under my care is very important to me. When I feel like I am not in control is when things can get a little messy.
When Kaylee went to three hourly bolus feeds I was thrilled. I was back on familiar ground seeing as all my other babies were fed three hourly through the day as newborns and I was finding a rhythm that I could dance to. I was picturing wandering around the house or walking down the street doing our daily life with Kaylee tucked in the sling or ergo. I was planning getting back to a normal life. And then she started having bradys (patches of slow heartbeat) which were obviously due to silent reflux. So Thursday morning she will have an IJ tube placed which will go through her nose into her small intestine rather than into her stomach. This will mean that rather than the three hourly feeds I was celebrating we will be on continuous feeds and when we wander around with Kaylee in the sling, I will have a feed pump in a back pack on my back. Instead of those moments of organic normalcy, she will still be hooked up to a machine. For months, possibly years, maybe even (worst case scenario) the rest of her life.
And I hit a wall.
And I continued to smack myself and anything else I could reach against that wall for about four days.
I agree that the IJ tube is necessary not only for her heart but for her digestive system. Many kids with CDL end up throwing up blood by their first birthday due to severe reflux and Kaylee needs all the calories she can get to help her to grow before her next two surgeries. I have been advocating managing her reflux pro-actively for weeks and openly harassing medical staff to make sure it was taken into account in long term planing as well as daily observations.
However coming to terms with the reality of continuous feeds requires a route recalculation.
The final destination or goal that I am reaching for as a mother is facilitating my children to grow to be as happy, healthy, strong (physically and emotionally) and wise as they possibly can and that they know and love God in a personal way. I also want them to be able to fulfil their full potential in whatever role they choose to pursue and that God has ordained for them in this world. This goal is equally as valid for Kaylee as it is for any of my other children. The route, however, has very different scenery than I am used to.
To a degree I need to mourn the loss of the scenery I expected to see with Kaylee. When all of this started I remembered a piece that was read to me years ago called Welcome To Holland. It describes the experience of having a child with special needs as being like planning a trip to Italy and getting off the plane in Holland. I would encourage you to go and read the whole thing for yourself but it finishes up saying:
And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very, very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.
I cry for three hourly feeds. I weep for breastfeeding my baby directly. I mourn for taking off in the car taking only nappies, wipes and a chest full of milk. I am frustrated that Kaylee, and by association my other children and husband, will hurt because of the bad things associated with Kaylee's conditions, and some of them (like heart surgeries, separation and trips to PICU) are very bad indeed.
But there is a reason why Kaylee is called my Tulip.
And there is only so long you can throw yourself against a wall before you have to recalculate your route and keep moving toward your destination.
It is just a matter of watching the windmills out the window as you go.