I am so blessed, but I also I believe it’s okay to say “it’s hard” and still be grateful and acknowledge that. I’ve learned a lot in less than a year since Colbie’s diagnosis. A lot about genetics, rare diseases, disabilities, therapies, neurology, insurance, etc. More than I ever thought I would need to.
Honestly, I’ve learned a lot about me too. My boundaries, how I process things, what I can and can’t handle, that I’m hardest on myself, and that I am still figuring so much out. Photography has always helped me focus on the good and gotten me through some other tough times, so even with my phone photos I tend to try to do this. It’s my personal “therapy,” but also the best way I know how to share our story. I’m working on writing more and on sharing the hard more, but that is scary too. I don’t want to come off complain-y, but I do want to be real, not just for me but for all the other rare disease moms trying to keep the balance.
But… S&$# has been hard. COLBIE is NOT hard. And I think I’m afraid to be completely transparent sometimes because I don’t ever want it to sound like she is a problem, because she is truly the BRIGHTEST light in my days.
Being enough IS hard. Doing enough is hard. Having older kids (who I also love with all my heart), who have their own needs, never ending activities, figuring out schedules, and balancing those with everything else is hard. Medical care, paperwork, therapies, research for how to get equipment needed, the 2-3 appointments needed just to get that process rolling, and fitting a job in there, is hard. Dealing with the pressure and even judgement from people who I hoped would understand more is hard, and having to say no a lot is SO hard. Partially because I wish I could do more and also because of the disappointment it causes others to have in me. But yes, it’s often a choice I have to make because we are just too busy, or I’m too tired and saying “no” sometimes is the only way I can keep up or get the mental rest I need.
I choose her over and over and what’s best for her and sometimes I just have nothing left. I know life is hard for everyone and I’m sure I have it better than many in ways, I just have to be honest that it’s not all cheering and clapping over here ALL the time…okay it actually kind of is with Colbie even on the hard days (told you I know I’m lucky). 😉 But the other reality is I am letting people down, including myself, left and right and I’m sorry.
In talking with other rare parents, I know this is normal to feel this way. Outside of the other challenges, I’m scared. I worry for her and feel all the feelings differently each day. My brain hurts, my hip hurts, my back hurts, I’m anemic, I have “almost 42 years old” health issues, and I am tired. I am not the best mom to my kids or best wife to my husband lately. We are adjusting to this new life path, but the hard doesn’t go away, I know this. It becomes part of us.
We are trying to fight/cure the currently incurable while keeping life moving forward as normal as possible. So, if I ever say no, or your rare disease/disability mom friend does. Please know it’s not about you, it’s not because of any reason other than I feel like I need to, for Colbie, for my other kids, our family, for me. Yes, you’ll see more pictures of me just snuggling her and playing. But I promise there is more to it all too. And those snuggles, while often keeping me from doing the other stuff, are something I will pretty much always choose first.
BUT don’t give up and don’t stop asking please. Before KIF1A I could’ve told you exactly what we were doing months away, now I don’t often know what tomorrow holds till I check my calendar because it’s become so much, so I’m often just as surprised when we can pull some last minute fun off too!