19 August 2014

The Hardest Job I've Ever Loved!


A few weeks ago an article was sent to me by a dear friend and a fellow NF parent. It was an article that touched so very close to home. Remember the mother of sick children, an article that literally describes our life and how we navigate through it. 

As the article states, "Motherhood is the hardest job you'll ever love". Hell, parenthood in general is hard. It's hard for mothers and its equally hard for fathers. Each parent feels a constant pull between being a "Good" parent, a valued employee, all while trying to keep our individuality in tact. Each parent has their own set of worries and struggles and we are no different. As we hobble through this journey we have been asked many times "How do you do it"? "I don't know how you guys keep it all together" Truth be told we don't know either… every day is a constant struggle. We have good days and we have bad days. We hear good news and then we get bad news. We question God and why any of this is happening. We get angry, sad, and every other emption in between. But, just when you feel as low as you can feel the most beautiful smile in the work reminds you why you live to fight another day! She looks to us to reassure her that everything will be okay - that we will keep her safe through all the scariness - That we will be there to hold her hand when stranger after stranger walks through the door… We don't have time to fall apart (for too long anyway). We have to gather our strength and every positive thought we can muster up in our bodies to show her no matter what happens we will always be there for her! 

Fear is a constant in our daily lives now. I have learned to hate quiet time. Quiet time leads to our minds wondering to places no parent ever wants to go to. I want to be busy, be productive… throw myself into something besides the craziness of our life. I don't want to worry about medical bills. I don't want to think about how we are going to fit in work and doctors appointment each month… and I certainly don't want to think about how we explain all these medical things to our daughter. Rylie is little, and explaining things to her doesn't take too much but it's painful to find the right words that she will understand yet not fear. One of the hardest things we have ever had to do is explain Rylie's diagnosis and treatment plan to our nieces and nephews. One thing is for sure, we really do have the BEST family in the world! We are blessed to have these 6 little humans in our lives. All of them are so different yet the love they have for their cousin is the same and it never falters. I think everyone in our families at one point or another pondered ways to keep the darkness away from them but let's be honest kids are smarter than most adults now days and it didn't take long for us to realize they would figure everything out and we had to be honest with them so they didn't have to carry the stress and anxiety with them. The amazing part… they are take every detail in stride. While they worry for their cousin it has changed nothing. They still love her with every once of their being and even on the worst of days they are still the only ones that can bring a smile back to our sweet girls face when she is feeling down. It's their sweet faces that she continuously looks at while we spend hours at the hospital. It's them that she talks about and looks forward to seeing when her treatment plans for the month are wrapped up. Seeing the way these kids interact with Rylie eases our fears and teaches us that with every "Bad" thing that comes our way we are blessed with a million times more GREAT things. 

We have had to give up many "luxuries, I call them luxuries because in the grand scheme of things they just really don;t matter much anymore. We don't just pick up and go places anymore… and my toes, well let's just say they have seen better days! ;)  Everything we do, everywhere we go is carefully calculated and planned out to make sure Rylie's health and safety are a top priority. we are constantly evaluating who is sick, what is dirty, and how she is feeling. For hell sakes every bag we own is now stocked with sanitizer, disinfectant, meds and a thermometer. And we never stray to far from home. We have went from planning fun and excitement to planning emergency routes and exit plans. Date nights and Weekend Get-a-Ways with friends are few and far between. We have had to give up lots of little luxuries, some friends too. Our lives have drastically changed since February... It seems like a life time ago. We've aged beyond our years in just a few short months but these last few months have truly opened our eyes as to what IS truly important in life. We have learned to enjoy the little things and savor every moment we have together. We have learned to value the relationships we have had and will have. We've learned to speak our minds and stand up for what we believe in. We've learned that being a parent is the absolutely 100% hardest job we will ever do but is without a doubt the best thing we will ever do! 

I was reminded last night that each day is a new day. We all have good days and heaven knows we all have bad days. Know each bad moment will pass and with it a new, good memory will come. That's the blessing that comes with being a parent… nothing ever stays "Bad" for too Long!!! 

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