Summer is wrapping up and I have to say this may have been one of the hardest…yet most eye opening summers of my life. Why you ask? Perhaps it is the fact I have 4 children in tow (soon to be 12 year old not only emotional from dramatic shifts in BG but experiencing hormone rages, a 9 year old who can play me like a fiddle, a 2 year old who really likes to make sure we all know she is the boss and constantly tests boundaries, and an 8 month old who is thinking he is able to keep up with the big kids and do what they can. He doesn’t like to be confined and loved freedom or momma all the time). Or perhaps it is the fact of our schedules’ being so stinking full all the time, never taking a break…always have something, most weeks 3+ appointments. Maybe it is the crazy world of type 1 and my urge to continue on and fight it constantly refusing for it to over-run Kinzie’s body. Then there is the possibility that maybe, just maybe my head is above water enough that I can now look back at our journey into type 1 and realize ‘holy cow, this is hard. It does take its toll.’ I have realized I can’t do it all, some days I feel like a bigger failure than other days; and most days I want to conquer the world and leave my mark fighting diabetes, reaching our and winning this battle. Whatever it is that has made this summer one of the most enlightening, most difficult summers I have ever had, I have to say on a level I needed it to be this way.
I can openly admit that I am not Super Woman…I cannot meet everyone’s needs and there is no way to survive this life (or a life with a child who has a chronic illness) without constant communication…healthy communication. Communication with your spouse/significant other, children, medical team, friends, family, neighbors, insurance carrier, pharmacist, vet, groomer, church group, coaches…the list goes on and on. There is no way to be able to do what we need to do without communicating pretty much on every level in every setting our basic needs. I don’t like communicating every moment…sometimes I like to shut down and keep to myself wishing I were a mind reader and things just could naturally happen. This task has become a little easier as time progresses, not sure if I should call it easier or just plain necessary where I have no other choice.
Challenges have been thrown into our laps and some have rocked our world the past few months. Other challenges have been a welcome event (like fundraising for our diabetic alert dog and helping those around us do the same with their D.A.D or T1D medical costs and pursuing my CDE). My kids have come to the grieving point since diagnosis (I believe it has hit full force) and they all deal with it differently (the older kids, that is). Watching them deal with such a life changer breaks my heart almost, if not more, than the day Kinzie was diagnosed. I can see some internal struggles, confusion, anger, resentment, jealousy seeping through at the forefront of their relationship and it terrifies me that they won’t be able to cope with these ‘adult’ like feelings in a healthy meaningful way (shoot I can’t half the time and think that this is something I have to address immediately). They are both in counseling and have been all summer long…with some resistance, we are trying to be proactive and help them learn healthy coping skills. I see great strides taking place and have hope that this could potentially change their outlook and the way they take their frustrations out on life. Perhaps this is a key to help them learn that it is okay to feel any way they feel.
One thing I have never had to do the past 14 years (1 year dating 13 years married) I haven’t had to do is EVER really work on my relationship with my husband…that is, until the past 2 years…really hitting us this past 4-7 months. I couldn’t have told you how to even start working on a relationship because I had a fairy-tale one up until our lives as we knew it completely shattered, only to fit back together in a completely different world. Although we both as individuals really grew strong from our journey, I think we grew strong in our own ways…in order to survive. There came a point this summer where I had to contemplate one of two things…1) how much more can I actually take before I completely break and 2) can I continue on like we are and be okay with things like they are. The answer to those questions was simple and didn’t even take much effort to dig them up because I knew them and had been contemplating them for quite some time. I couldn’t take much more and was at my edge or even falling over the edge and I knew I couldn’t continue with things the way they were for much longer. I was near the point to divorce and remain loving supportive friends or stay together and resent my husband, who up until a year or so had been my best friend and the person I admired the most, and feel completely defeated everyday. Those were my options if change wasn’t possible. Does it hurt when that is my reality? Most definitely. Was there possibly another answer? I sure hope so.
So here we are, at another huge life changing crossroad giving it all that we possibly have. CHANGE. We are making strides to make changes in our relationship. We have come to a point where we have realized that others beyond our little family have to come second…we come first. That is hard with people needing us too…perhaps this has been one of the hardest things to realize and see. The hard thing when you have a chronically ill child is that (for us at least) there isn’t really one thing I can pinpoint that has changed us or put a wedge in-between us. The fact is that we ARE two completely different people than we were when we fell in love. Our needs, wants, prayers, dreams, life have become so different in such a short period of time I am not even sure if we are able to keep up with them on our own at times. We are stronger individuals, so so so much stronger than we have ever been as individuals…fighting for your child will do that to you; but we are most definitely different as a team. It is crazy how this happened and the only way I can describe it is by saying it has been like going to bed at night with your dream, best friend, love and waking up to a complete stranger and having to learn them all over again. EVERYTHING has changed. EVERYTHING is different…and unfortunately it has been our relationship that has been the brunt of all changes and has had to take the tolls from this disease being on the back burner.
Can you imagine telling your best friend, your spouse, and your other half that you do not know how to function with them? That you don’t want to put any effort in their direction and are completely worn out and tired? The crazy thing is that we both felt the same way, experiencing different things, surviving in different ways but both desperate for change no matter what that change may be? It isn’t easy, it isn’t fun. I can say that the past month this has become a priority. Is it picture perfect? No. It is better? Oh you bet! Is it fixed? Not by a long shot! Can it return to like it was in the beginning? Never, that world will never exist again, it doesn’t exist. Am I worried we will reach a desperate point again? With every fiber of my being. We are learning to be a team again. We are learning to communicate (which use to be so effortless for us). We are learning to disagree (which is new, we didn’t fight; this is a new world for us). We are learning to appreciate each other for the stance they take when it comes to our child. Do I blame diabetes? Yes. Do I get mad and wonder why us? Every day. Every day I wonder why us, and why, why, why, why my daughter? Why not me? Why her? Why not just me, why my marriage?
Every ounce of my energy has went into my little family this summer…I wake up searching for positivity to place in our home and carry on. I seek opportunity to reach out and be that difference for other people and advocate because it is what helps me keep going. I worry about Jared, I worry about Kinzie. I feel guilty because my focus is on the big kids lately trying to help implement positivity, appreciation, positive coping and feel like if we had normal challenges and a normal circumstance my two little ones wouldn’t be deprived of some of that time. Our journey into type 1 has proven to be a big balancing act. It has brought perspective into our lives and rearranged everything it has touched. We are at the point where redefining and establishing our life has come full force and figuring out where we stand in this new world and what our roles are has been our obvious task. We don’t get a break for this life, we don’t get a re-do…this is us, 24/7 and I think that we have done a great job with it thus far…never yet yielding to its tiring pulls, temptations, trials. I think that alone speaks volume for the power we encompass.
So in the craziest way, I wouldn’t change this crazy, nasty, challenging summer for a thing…because with the bad often times comes the good if we continually seek it and put that energy forward. I can’t predict the future. I prepare myself for trials, upcoming tasks. I prepare for the worse, and know some day I may need to give my daughter a kidney or she may need other medical care. I know I may face depression with my kids going through what they do, or even resentment for where I have to focus my energy…and that is okay. I am willing to face any trials I am deemed worthy to face. I am willing to because I know anything thrown my way is because I am capable of that trial at that specific time. I can do this…and if you are in similar situations, know you can do this too. One moment can change your entire world forever…I know that to be true. September 22, 2010 was our one moment. I refuse for us to use that date as victims. We will be stronger. We will continue to fight. We will get through this together and leave a huge mark on the type 1 world…being diagnosed with T1D was just so we could live through it; diagnosis came our way for a reason and we can’t stand idle by.