On Being a Special-Needs Mom and Being a Friend

Preface: I originally took this post down, however, I have received overwhelming requests that it be put back up. 

This post is not directed at any one person but is the culmination of my own experiences as well as those that have been shared with me by others. It is not meant to be accusatory or inflammatory and I deeply apologize to those who interpret it in that way. It is meant to be an explanatory and informative piece:

Sitting in a waiting room in a hospital phlebotomy lab with my two tired, grumpy, screaming children - after a two and a half hour drive to get there - is really the last place I want to be. (Actually, second-to-last, because the results could lead to being admitted to the hospital and having to wrangle both kids while holding one down so she can get an IV.) But, more often than not, lately, that is where I'm finding myself.

I've posted before about what we go through on a regular basis; no need to rehash that. I don't think anyone would argue that our family, or any family with children who have special or high-medical needs, has a lot of stress. Certainly not as much as some, but it can be overwhelming at times. Especially times like this, when we are faced with the additional challenge of figuring out a potentially life-threatening issue, it's cause and how to treat it, rather than just routine testing.

I feel that I hold it together pretty well, overall. Often, I'm overwhelmed and sometimes I'm depressed. It's not that I feel this is a burden; I consider it a blessing and Kai is a joy. It's just a lot of tough stuff to deal with sometimes. While most people are preparing their children for college, I'm just hoping and praying and doing everything I can so that my child survives long enough to have that option. 

Sometimes, I get the feeling that it's viewed as being dramatic, negative, or that I'm trying to one-up someone. I'm not. Just like anyone else, I turn to my friends to talk about things when I'm in need of a little moral support. It just so happens that a lot of my life revolves around with the effects of transplant, life threatening situations and scary statistics. If it's overwhelming, tiring or frustrating to hear about sometimes, I'm sorry. I understand. I live it. I feel that way, too.

I often feel like a failure, or inadequate, by comparison, when I see those moms who seem to have it all, do it all, know it all and who can balance it all, seemingly effortlessly... all with a smile on their face. Meanwhile, I struggle to get out of bed some mornings, my house is a mess, my laundry is piled in a corner and I'm turning on the TV instead of reading to my kids so I can try and find an hour here or there to catch up on the work I'm so behind in because I've been running back and forth to the hospital so much. 

I may not think to ask how you are doing, or what is going on in your life... partially because, I assume, my friends and family would tell me if they want me to know or if they need someone to talk to and mostly because, yes, I am selfishly caught up in my own life at the moment. I'm sorry. I am not Super Woman. I'm not even a great friend or a great Mom. But, I do the best I can and, if you need a friend, I'm here and I won't judge or compare because we all have our own stressful lives and yours is no exception.

As the mother of a child who comes with a multitude of additional challenges that go above and beyond the norm and, I think, speaking for others in my situation: All we need from a friend or family member, whether they live in our world of medical or behavioral challenges or not, is simply the acknowledgement that it's really freaking tough sometimes. We don't need to be told we're "super" or put on a pedestal. We don't need to feel "normal" because our lives are anything but and to deny that is to deny our right to feel the way we feel about it. We aren't being negative, dramatic or trying compare our lives to others or compete. We just want to talk to our friends about what is going on, or have a shoulder to lean on, like anyone else does. It just so happens that transplant, life-threatening situations and the constant, overwhelming stress associated with those things are a huge part of our lives. We are being realistic. We have seriously, chronically ill children. We don't consider them a burden, rather a joy, but we are often overwhelmed and even depressed or exhausted trying to cope with it. Anyone else, in the same position, would be as well. If they weren't, I'd lay my bet on when they were going to have that meltdown they were entitled to. 

We're not failures. We're not super-heroes (our kids are). We are special-needs parents.