It is hard to believe but February 8th, 2012 will be our 1 year anniversary of joining the T1D world. We thought time flew before, but it was nothing compared to the last year. Must be all those good night sleeps we have gotten since the diagnosis and all the free time we now have to fill, right? In any event it has obviously been a difficult year at times but we have certainly learned a lot, made some progress towards BG consistency, and now have a better appreciation for the challenges faced by the many people dealing with this and numerous other diseases.
It is amazing to us how, after a full year, so many things about that day are still so clear in our minds. It is tough to re-live that entire day but to avoid thinking about it on almost a daily basis is impossible. We know we were truly lucky to arrive at the ER when we did and to have had so many good people care for her during her stay in the hospital. On several occasions in the beginning we asked ourselves “why her?” It just didn’t make sense that this sweet, loving young girl would be dealt such a challenging hand. We all spent many nights lying in bed, allowing the darkness to hide the tears running down our faces. It was just heartbreaking to think about our baby having to deal with T1D for the rest of her life, or at least for a very long time. But the fact is - no child deserves to have to go through what this disease inflicts and requires. And no family deserves to see their child or children have their life impacted by it.
As we have gotten more involved with Riley Hospital for Children, it has become clear that it could be much, much worse. There are many kids that would give anything to trade places with Emerson. While we still have those moments where the emotions get the better of us, we no longer ask the “why” questions. We are fortunate that Emerson is such a great patient. She still tells us at times that she doesn’t like or want diabetes. We completely understand and agree. But we also see how strong she is in dealing with all it has to offer and can’t help but think there are so many other kids that would have such a harder time coping with the disease – and understandably so. We see how unaffected she appears to be when others ask about her pod or watch as she gets her blood tested or insulin delivered. It has just become part of her. For the way she has handled this entire situation – she is, and always will be our hero.
So how has T1D changed our life? Well, outside of consistently getting less sleep and conducting extensive analyses of historical glucose readings to determine the necessary insulin dose adjustment, it hasn’t changed all that much. Of course this is a bit of a stretch, but we did already stick pretty closely to a routine and schedule on most days, so we didn’t have to make a big change to how we go about our lives. We also maintained a relatively healthy diet for the most part, so we weren’t required to dramatically alter what she eats to have a hope of finding consistent BGs. We didn’t, however, always count carbs and measure foods….and boy were we missing out.
What do we hope changes in the coming year? One of our biggest concerns still to this day is our ability to detect when Emerson is low. We are fortunate that she doesn’t have frequent lows but when she does we have rarely been able to tell. She actually seems to be at her best many times when she is low – her mood is usually good and she plays very well on her own. The only characteristic that we have noticed on some occasions is her color becoming pale and dark circles appearing around her eyes. We have not always been correct in using this as a predictor but it has been accurate more than a few times. We are interested in hearing how others pick up on lows so if anyone is willing to share their experiences we would welcome them. Another change we would love to see is for her pancreas to finally decide to discontinue the intermittent insulin production…unless of course a true miracle is in order and it wants to become a fully functioning organ. It’s still okay to dream right? We look forward to the day when we are no longer surprised with a series of lows after thinking we have made great strides in finding consistency, only for things to get back to normal after a few days. Finally, we are hoping to find enough consistency in overnight BGs that we can reduce the number of checks and corrections that we currently perform. We have made good progress recently but still do checks, and more often than not give corrective doses, at 12:30 and 3:30 a.m. Depending on what those BGs reveal we sometimes find ourselves having to do additional checks throughout the night as her glucose refuses to cooperate (the flashlight is obviously a frequently used tool for us!). Her endo is still surprised by how much it fluctuates while she sleeps. We had no idea we would be re-living the newborn phase and have to function on only short naps for this long. At this point, a night of uninterrupted sleep might put us into hibernation.
While we have only gotten through the first of many years, we do think we can offer some words of encouragement for those just finding themselves thrust into the T1D world. We know how devastating the diagnosis can be, especially when you are completely unfamiliar with the disease. If you are just going through this experience and feeling completely overwhelmed don’t lose hope. While it isn’t by choice, you will quickly gain a level of comfort that you never thought possible and will become a very effective healthcare provider.
Throughout this first year we have found the community of T1D bloggers to be extremely helpful. Keeping up with the various blogs is very therapeutic, as it makes you realize that you are not in this alone, and that can be very comforting, especially in the beginning. It would be great if there were some way that newcomers to T1D could be made aware of the DOC following the diagnosis so they can get acquainted with it as soon as they are able to catch their breath. The community is a great source of valuable information, advice, and experiences and is one of the things we have been most amazed by.
Well, one year down and many more to go. It was obviously a difficult year but one we are glad to have behind us. The highlight of our year was an easy choice. It was when a couple of her pre-school friends had their families bring them out to join us in the Walk to Cure Diabetes when it was in Indianapolis last fall. It will be experiences like these that will allow for brief escapes from this challenging disease going forward, and there can’t be enough of those.