I’ve always said that I was chosen to be Jaxson’s mom for a reason, and I truly believe that. Going through this journey with him has taught me so much about life, and it has helped me grow as a person. I’m not going to lie, this has been a roller coaster of emotions. It’s stressful at times, and we have our bad days, but those bad days make the good days so much better. I have learned to be thankful for different things. Aside from being blessed with the sweetest boy, who is no doubt a warrior, here are a few other things I’ve been given:

Strength. 3 and a half years ago, I was a scared single mom visiting my son in the NICU. I didn’t know how we were going to face the battles ahead. I wasn’t strong; I had never experienced anything traumatic in my life, and the only time I’d been in the hospital or had surgery was when Jaxson was born. I didn’t know anyone in a similar situation. This was a whole different world I had never experienced before and it scared the hell out of me. But, through various challenges, traumatic events, and many many tears, we both acquired strength (him more than me, obviously). Thats not to say that some things don’t scare me, or stress me out. I’m still a normal human with emotions; I still cry and get upset about things out of my control. But I’ve grown, and I’m not the same person I was when I first started this journey. Looking back, sometimes I don’t even know how I’ve made it this far. I get through it with a great support system, and because he depends on me. I have learned that its so much easier to be strong when you have someone to be strong for. He can’t give up, so neither can I.

Knowledge. If you were to ask me when I was pregnant how I saw my future, my answer definitely would not have been “Raising a medically fragile child; essentially becoming a nurse minus the schooling and pay.” But you play the hand you were dealt, and I’m proud to be here. I’m proud of the mother, and person I’ve become. One thing I learned right off the bat is that medical professionals (Doctors, nurses, surgeons, etc.) often don’t take you serious if you haven’t studied medicine. But, this life has given me plenty of experience. The things I do to properly care for Jaxson on a daily basis are far more complex than an average mother; anyone off the street couldn’t do it. So I think I deserve some credit. I’ve learned so much about Jaxsons condition, and life in general. I’ve learned how to be an advocate for him, which I’ve found is so important.

Perspective. Jaxsons diagnosis has given me a new point of view. Like I said in a previous post, this is far from what I thought motherhood would be like. Raising a child with a chronic (and/or life threatening) illness isn’t the same as raising a healthy child. Our routines are not the same, they have all the same needs and then some. You learn to be thankful for things that weren’t relevant before, and to not take a single thing for granted. We no longer worry about reaching milestones on time. We celebrate small victories, and cherish even the bad days (and believe me, there are a lot of bad days), because you don’t know what will happen next. We deal with all of the ER visits/admissions, all of the pokes and procedures, and days filled with doctors appointments. You come to appreciate all of the days not spent in a hospital, because its pretty much your second home. It’s a different life, but your child is worth every second.

Patience. From sitting in a doctors waiting room an hour after your scheduled appointment time, to waiting on a transplant list for life saving organs and everything in between. I’ve learned that things will happen when they’re suppose to, and I can’t change that. Jaxson learns new things by repetitiveness; when he  jumps, I enthusiastically say “Good job!” every time. He will point to something until I acknowledge it. I don’t get upset when he licks every single chip in a bag and then throws them on the floor for me to pick up. He has his own way of communicating, and at times it can be frustrating because I don’t know what he wants or how to make it better, but I stay patient with him. He has his own way of doing things and I’ve accepted that.

An Unbreakable Bond. I don’t mean to discredit anyone when I say this, because I feel like mothers usually have a pretty strong bond with their children anyway, but the bond you have when you parent a medically fragile child is indescribable. One of the first things my mom said to me when I first held Jaxson was “I love the way he looks at you.” His eyes were always locked on mine. To this day he will still stare into my eyes for what seems like an eternity. Every time we go to the ER, or are approached by someone new, he clings to me. He looks to me for comfort and answers. He looks at me with pure love. Something happens when you see your child incredibly sick and fighting for their life, it brings you closer. It makes you learn to appreciate every single day you have with them. We are what keeps each other going. We complete each other.

Through all of this, I have come to realize that the best things in life really aren’t things at all…

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Jaxsons transplant fund: https://www.youcaring.com/jaxsondahl-681028

 

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