Honestly, It's Hard

Morning of 9th birthday

9th Birthday :)

Another two months have passed and our Izzy girl is 9. It has been four years since we stopped looking for a way to extend her life and put all our efforts into making the life left be as full as possible. Four years. What more is there to say?  (Apparently, a lot as I am me and me is loquacious.)

 

 

 

 

 

  

Emotionally, Izzy is in about the same place she was in February--her anxiety seems to be controlled to a healthier extent. Her pain is under control for the most part and she smiles a whole lot. (And since I started writing this days ago, she's seen her GI doc and has actually gained weight. She is around 39 pounds with sweat pants on and water weight. She is about an inch taller since the fall too.)

Even with the positive change in her emotional state and size, McKenzie still has a tough time. She is sad quite a bit (yes; even with a smile on her face, she is sad). Izzy talks about her future and dreams she has and how they probably won't come true. She wants to be an inventor, an engineer, and a mom, but doesn't think those things will happen for her. Dale and I do our best re-assure her and help her not become despondent all while trying not to sugar-coat life to the extent we are unreal and she knows that we are lying to her. It is a tough, delicate balance. I think we do okay usually. Sometimes, we fail.

McKenzie asks almost daily why her life has to be so hard. She is afraid of dying. She is afraid of being alone. She is afraid of dying while she is alone. Again, Dale and I do our best to help her know she is not alone and won't be alone and that dying it part of everyone's life and that what matters most is not when you die, but how you live. But it is hard--ridiculously hard to remain calm and level-headed in those moments. The emotional drain of trying to keep her from falling into misery is beyond exhausting, especially when we are trying to deal with our own fears and anxieties.

Then you add in Phineas and it all gets more clouded, murky, and almost impossible to navigate. Life with a terminally ill child is difficult in ways that cannot be explained or understood, even by those of us living through it (even when everyone on the outside thinks things are honky dory). We don't ever want to lose hope because hope keeps all of us going, but we also can't ignore reality. How do you keep hope alive, while still living in the moment? That is our constant struggle.

 

Physically, Izzy seems to be declining to me. I'm sure the cardiologist will say once again that her heart looks unchanged (as she always says), but I know that's not true (and it hurts like hell to see my baby fading away and the doctor minimizes my fears and make me feel like I am going crazy). Izzy tires more these days. Even though she does wear her oxygen most of the time, she gets tired way more easily, doing way less. She's blue a lot, even on 3L of oxygen. Even light activity makes her heart rate increase and oxygen drop quite a bit. We've learned that excessive activity will cause extreme pain and even high fevers. By excessive activity, I mean what a normal kid does every day at recess, but adding in Izzy's many breaks, oxygen, and wheelchair.

Spending time together as a family seems to be way more important (even though its always been important). Even Izzy says so multiple times a day. She is constantly telling us how much she loves us and letting us know she'll never forget us. Our entire life is heart-wrenching. Izzy knows she is getting sicker. She feels it. She comments on it. With each comment, Dale and I break a little more inside.

We love to see Izzy have fun and enjoy life. We do everything in our power to help her have typical kid experiences. We work very hard to help her make it to school as much as possible and attend school events and activities. She wants to be part of life and the group. She is nearing the end of third grade, where cliques rule and being tethered to oxygen, a wheelchair, and an aide don't help her fit in, but she's making it work as best she can. Many times, Dale and I have to pick up the slack--be the friends for Izzy that she simply doesn't have. Don't get me wrong, there are plenty of kids who like Izzy, but she's not asked to play any more, so we play with her on her level. She is quite okay with me as her best friend. She told me that just yesterday. Thankfully, she's okay with that.

I do take a ton of pictures, capturing the smiles and activity. You may see such a picture and think everything is great, but really, it's just me desperately trying to hold on to the ephemeral. Since last spring when everything changed so suddenly and Izzy started declining more rapidly, it feels like every "best day ever" may be the last "best day ever", so I try to capture every minute to hold on to for a later date, whether it be for me or for Izzy to look back on. There are so many things we did even a year ago that are simply out of reach now.

I am so grateful that Izzy is not in the same emotionally bad place that she was in January and the fall, but it is still extremely exhausting. Simply measuring 20+ doses of medication a day is exhausting. We've been doing that for nine years now. (Although, I think she was down to about 10-14 doses a day at one point and well over 30 doses at other points in time). Nine years of constant medications, doctors' appointments, procedures is a lot. Think about how tired you get when your kid is sick. Now imagine that its the worst sickness your child has had and then extend that illness to nine plus years all while you have to act like life is normal. That is why Dale and I look like zombies. We're spent. In fact, we were spent several years ago. Now we're shadows. We have nothing left, but we keep giving, keep trying to make each moment count.
 
That's just us.

I can't tell you where Phin is. He is a tween. Everything is changing for him daily and he doesn't want to burden us. Yet, we know there is a lot under the surface we don't know. It breaks us all the more because we can't help him.

Then there is our sweet, sweet girl. Even if Izzy looks great to you, remember there's a battle brewing under the surface. 15 minutes of fun could cost her a night full of agony. A morning playing with friends could lead to three days in bed. The amount of work it takes just to get Izzy to attend an event is exhausting. We have to plan and strategize. A field trip to the candy factory on a Thursday morning, means earlier bed times all week, making sure no true activity the day before, and lots of hope. (At least that's the plan for this week.)

I know this post is not as positive as I tend to make these things. I promised my therapist I would be more honest about how hard it all is even when Izzy is doing relatively well. The truth is it is very hard for Dale and I to hear people comment how good Izzy looks and how things must be going well because she was smiling or I posted the one pic I could snap while she played before she stopped five minutes later. Dale and I know that no matter how hard we try to stay positive and be positive, every moment is still tinged with sadness. We know life will probably never be completely good again. Hearing from other people that Izzy must be doing better hurts. It physically hurts to hear someone say we must be happy because Izzy is doing better.

Honestly, because we dug our way out of the pure hell we were in before doesn't mean everything is better. 

We know that self-protection and the need for sanity keep people's concerns where necessary and inward toward their own families, their own lives. But just because it hurts you to think about the hell we call everyday, so you choose not to think about it, doesn't mean you should try to push sunshine and roses on us. Just because Izzy smiles or goes to school for half a day doesn't mean things are good for us. Just because Dale and I go to work in order to keep our home, food, and medical care, doesn't mean we're no longer fighting the demon CHD. Simply because we choose to make the most of the time we have doesn't mean we don't hurt.

I don't need any of you to feel our pain or go through our daily struggles. I'd rather you remain hopelessly ignorant. I don't need you to even acknowledge the shit show that is our life. What I do want; what I promised I would ask here, is that if you are excited to see us doing something positive, normal, fun, and you find yourself about to say something along the lines of "You must be so happy!" or "Izzy must be doing great!", think again before you speak. Even in the most joyous of times, we are still sad. Many times, the most joyous events are the hardest times for us because we are always wondering if this will be the last time or we are remembering how similar events had gone before and how things have changed so dramatically.

We love everyone who has been on this journey with us and supported us through the years. I have been a main cause to the angst I feel and write about here because my posts tend to concentrate on the positive. (I so want to be hopeful.) But, I have to take care of myself and, apparently, part of doing that is trying to be more honest that reaching the end of science sucks. It just sucks.

Mel