Happy Six Months

Well we've made it six months since diagnosis without anyone dying (and I say anyone purposely haha). It has been a ride to say the least. We have experienced extreme lows, and extreme highs, BG levels that we can't explain, teething pain and growth spurt hormones making us question everything we know, and so many more things. We have personally went through so many things during this time as well, moving, work changes, sicknesses, and many more day-to-day stressors. All of these things affect Lily's diabetes at the end of the day, and I can feel that. I've felt like I'm drowning at times, unable to keep my head above water, and I've had times of feeling so accomplished and proud of how far we have come.

Six months can seem like a long time, but when you are taking on a lifelong disease it seems like there isn't enough time in the day to learn everything, and try new things to see what works best for her. The nights have felt long, but the days are flying bye and I wish I had more time in the day to be better, but I think that we are doing pretty good for where we are at. On the days that I feel like we are failing, it has helped me so much to talk to other people or hear other people's stories of how they have struggled too. I obviously am much harder on myself than others would be, and I know that I sometimes expect too much out of my self too quickly, but I just wish that I could be an expert over night and never make mistakes, but that is not reality.

We have seen a big improvement in our care for Lily lately and that is due to our communication and team work. We have been open to trying new things to see what Lily's body requires as no one's body will react the same. I have learned to be fluid with her day-to-day care, but this can pose new obstacles when it comes to co-parenting her. It can be difficult to be fluid with certain situations and still make the other parent feel like they are a part of the decision making process, and maybe the other parent doesn't agree with what you decided to do. This can be so hard on the parent that made the decision at the time. I think if anyone is reading this that is co-parenting a sick child, I feel like it is so important to trust the other parent is acting out of care and doing the best they can. Obviously each co-parenting situation is unique, but if you can't trust that the other parent of your child is doing the best they can for your child's disease management, maybe you have a larger issue that needs to be dealt with.

We have had situations where I want to try something with her diabetes management in that moment, and later I am made aware that I made a decision that should have been discussed with her Dad before trying. This can make it hard to be as fluid as I would like, but there needs to be mutual respect between everyone caring for her day-to-day so that we are the best team we can be for her. It is all a learning curve, in every single aspect. Everything you think might be a hurdle with this disease is just the tip of the iceberg. There is always so much more below the surface to deal with and adapt to.

There is also the 'issue' of parents not seeing eye to eye on management plans. I have wanted to change something and he doesn't, and he has wanted to adjust things and I don't. It is a lot of compromise because you cannot undermine the other's concerns. At the end of the day, the goal is always Lily's health and we are able to figure it out and I'm grateful for that. Co-parenting a healthy child wasn't easy some days, adding in a life-threatening disease can heighten stress and emotions. Take a breath and remember the end goal.

The toll my body has taken in the past six months has been... interesting... My weight has fluctuated during this time, from stress eating sweets to starving myself either as a form of punishment or as a sign of stress, to my skin breaking out, to me chewing my fingers to the point of having to bandage them to stop the bleeding. I slept more during the new born stage, and that says a lot. As I am writing this out I am imagining if Lily were to see me do these things when she is older and how ashamed I would feel. It is so good for me to write these blogs in a countless number of ways. This is an example, I will be more conscious of these things to protect Lily.

I heard a quote on the podcast that I listen to that said " it always amazes me how many people can't change their lives for themselves, but can do it for the love and wellbeing of someone else". I can't think of a more fitting situation for that quote.

On the positive end of all of this though, seeing Lily's body changing has been so amazing. She lost so much weight while she was undiagnosed and I hated seeing her so skinny. She was always my chubby little baby and it broke my heart to see her thin. I still find her a little more thin than what I think she would have been but I think that is due to her lower carb diet and the lack of sweets. I know that she is healthy now so her weight doesn't bother me as much, but I do miss how much heavier her cheeks used to be, when they would literally hang off the sides of her face.

I know that I can take better care of my body, but my focus has been on getting a grasp on this disease. Once I feel better about where I am at in her care I know I will make time for my needs because I won't feel as overwhelmed focusing every spare minute on Lily. My issues are temporary and non life threatening, my priority is getting a hold of her lifelong, daily life threatening disease. And I'm sure the moms reading this can relate to putting their needs on the back burner for their children. I know this level of self neglect is temporary, and I am excited for the day I can share the focus on my body as well as hers.

My world was turned upside down six months ago, but it has also expanded so much in that time. I have learned so much and I continue to learn. I am joining the T1D community and I feel so accepted and have received no judgment when I reach out for help or advice. Anyone that is touched by T1D knows the emotional rollercoaster this is, and how hard some days are. I have read books, articles, listened to podcasts, met new people, educated people and expanded their world slightly, and my outlook on life has all together changed. I get to see first hand how amazing and strong and resilient my daughter is every single day. I am constantly amazed by how quickly she is able to adapt to this new life and I know she will never let it slow her down.

The more I learn the more I stress about her later in life though.... Every time her levels get high I worry about her body later in life. I worry I am causing permanent damage to her, maybe damage she won't notice until she is in her 50s, but damage nonetheless. I worry about her drinking alcohol when she is in high school, I worry about her getting pregnant one day, I worry about her getting burnt out one day as an adult and not telling anyone. Depression can be so dangerous for someone with diabetes, and as someone currently on anti-depressants I stress that she may struggle with it one day too and have that result in her not taking care of her diabetes. Will she let me take care of her in those times? Or will she hide it from everyone and let her body take the toll? So many thoughts go through my head, and the more I learn about, the more I have to worry about.

Lately I have had the awful thoughts of insulin shortages. I started researching pancreas transplants and tried to see if I could give her mine. Turns out you need it... and my mind went to ways I would give up my life to give her my pancreas if there were a day she could no longer get insulin. I would not think twice about giving her mine if it meant life or death for her. But this is how I get into my lows, there is no insulin shortage and she has everything she needs. I don't need to plan out how to get her my pancreas, because we are managing her diabetes. I can't let these make believe scenarios bog me down or take up any of my mental energy, I don't have any extra to give.

Being a mom is such a weird thing. To say I would give my life so my daughter could have an organ she needs at any moment is bizarre, but reality. I am very thankful I don't need to, and really hopeful that there is another way to cure diabetes in the future (I saw a study about injecting the cells that create insulin into someone with diabetes to see if they will accept them after many treatments and this really intrigued me), but for now I will probably continue to make emergency plans in my head... My best friend recently said to me that you can't put water into someone else's glass if yours is empty, and that really got me thinking about the mental and physical effort I put in to Lily. I feel like a lot of it isn't seen by others, obviously they can't see my thoughts racing all day or my elevated heart beat 90% of the time from the anxiety and stress I feel for her, but I know those that do worry about me sometimes, and I am really thankful for them. I may not be putting water into my own glass right now, but the love and support I get from the ones that love me have been keeping my cup from going empty. Thank you.

I look forward to continuing to learn, and expand my world. I will continue to improve day by day and try to be better for her. I look forward to the day we are able to get a pump and manage her diabetes better and more accurately, but for now we are slowly improving with MDI. No matter the treatment type, we will give it everything we have to get her into range and moving smoothly throughout her days. Luckily for Lily, she has the most stubborn caregivers you could imagine, and none of us are willing to let this disease get the best of her.

So cheers to six of the hardest and most challenging months of my life. There have been ups and downs, good and bad, and so much love in that time. As long as I have my babe at the end of the day to kiss and laugh with I have everything, and I will do anything to keep it that way. Cheers to the strongest, most patient, resilient, and loving little babe there is. I am so grateful for the life that I have, even on the challenging days. Now... let's get through the next six months keeping everyone alive!!!

xoxo T1D Mommy