Thursday, December 8, 2011

This is Hard.

Sometimes it helps to just admit when things are hard . . .

This journey has its ups and downs and ebbs and flows, and lately, I've been struggling a little with my feelings about Sammie B's physical struggles. As I've said 8 zillion times, I just wish I could make things easier FOR HER. She deserves easiness.

It is not like I'm feeling sad, or depressed, or grieving about Sammie B's disability lately. I'm not. It's more like I think about it as I watch her struggle to do something that I wish was easy for her, or as I lift her up to do something that other kids can do independently, and I think, "damn it!" I think I'm just feeling a slight bit of anger at the universe. Like, "damn it, we are three years into this journey and she's struggled enough. She's worked so stinking hard. When does the 'easy' she deserves come?" It's not like I'm staying in a bad place, I'm not. It's more like I think "damn it!" and move on. I'm not even sure what to call the feelings I'm having. I think it is frustration. Frustrated for Sammie B. Frustrated that there are so many hard decisions to make, and frustrated that as a family, we just haven't known much "easy" in the last three years.

So, that's that. I'm kind of struggling. As Sammie B gets older, and bigger, we have a lot of really difficult logistical things to think about, and things that make me say "damn it." I can't help but think about how fast she's growing, and carrying her IS becoming harder. But there's more . . . cognitively, I worry that we are holding her back. She's a bright little girl, who WANTS to do three-year old things, even when her body won't let her. And, we are reaching a point where carrying her isn't age appropriate, nor is her having an adult glued to her for assistance all the time. We are in the process of getting a gait trainer (more on that in another post) (a medical walker with some extra support) and I wish we'd gotten one sooner (damn you old PT), which we hope hope hope will give her that extra independence, but our home is pretty much the least accessible home ever. We have stairs up from the garage to the living room, then another flight of stairs to the kitchen/dining room/den, then another flight to the master bedroom, then another flight to the girls' rooms. That's four flights of stairs. So, we know that we need to think about putting the house on the market and getting a single-level home. We've probably delayed that decision as much as we can, and we've now really started talking about doing so in a year. But, we bought three years ago, before the market crashed, so we know we'll likely lose what we paid down and all that we paid so far (hopefully, we won't be in the hole and have to write a check). . . which just stinks. It would take us a long time to save for another down payment, so we'll likely rent, which isn't the end of the world, but it is just kind of a hard decision to have to make. This was our first home we bought together, we bought with the idea that we had room to grow and could stay here for awhile, and we love our home. But, we want Sammie B to have a home that is accessible for her. She deserves nothing less. We still believe with all our hearts that she WILL walk, and her new PT seems confident she will too, but there's a lot of progress to be made between now and then . . . this home isn't a great one for a gait trainer or a simple pediatric walker (which would likely be the next step after a gait trainer) and even once she starts walking, stairs may be a challenge at first. A lot to think about. And, honestly, those are the thoughts that make me say "damn it."

When I watch my girl get so excited about something that she loses her balance, I sometimes think "damn it." Frustrated FOR her.

When I get a call from the school PT saying she has a vendor that is going to give us a loaner gait trainer for school but the only time they can meet with us is on Friday, the day I'd planned to spend the whole day doing FUN things with Sammie B, I think "damn it," and then rearrange our plans so that we can meet the vendor and do "fun" the rest of the day.

When I hear that, for the first time, another kiddo in Sammie B's class asked why Sammie B can't walk, I think "damn it," even though I know the teacher (and that student) handled it well. JUST. WANT. EASINESS. FOR. HER.

When the teacher says in the parent-teacher conference, that she's new to the orthopedic impaired kid like Sam, I think "damn it," and wish just once, we weren't the trailblazers.

I am slowly, slowly learning to navigate this world with two kids, but this hasn't been easy either . . . I got a new wrap yesterday so that I can wear Mia (who demands to be held!) and still have my hands free to assist Sammie B with walking, to lift her, to do the things she needs my help with. I've had moments of frustration when I was holding Mia and Sammie B needed me, like when I braved the park with both of them and was pushing Sammie B on her trike with Mia in the Ergo on my chest and Sammie wanted off the bike for a moment to play in the grass. My first instinct was just to tell her "no," because getting her off and on with a baby on my chest wasn't easy, but that's not fair to her. So, we did it, even though it was not easy. I'm hoping the new wrap (which isn't as bulky and awkward as the Ergo) helps in these moments. And more than anything, I just hope and pray that in those moments of frustration, I can keep the frustration out of my voice. Because I don't want Sammie B to sense that and ever, ever, ever thing I'm frustrated WITH her. I'm not. I imagine she must be very frustrated with her body. She knows what she WANTS it to do and even what WE want her to be able to do, so in those moments, I never, ever, ever want her to feel/sense/hear my frustration. Because in no way am I frustrated WITH her. I'm frustrated FOR her and with our situation. OH HOW I WISH I COULD SNAP MY FINGERS AND GIVE HER THE EASINESS SHE DESERVES.

As we look for ways to help Sammie B be more independent so that she CAN do age-appropriate things and as we look for ways to adjust our home and our world to make it one that is accessible to her, there will be hard moments. "Damn it" moments. The good moments far outweigh those moments, for sure, but today, I just needed to admit that it IS hard. And, to allow myself to feel the frustration FOR my girl, to say "damn it," and to move on.


Dinei said...

Hugs, mama. Usually I remind myself that it can be hard and be a good life at the same time. Today it helped a lot to just let myself be 100% mad and then 100% indulgent.

schlennerfamilyof4 said...

Big hugs to you! It is okay to be mad for Sammie. I have these feelings for Hayden as well. Right now he is just so happy and doesn't realize how hard things are for him. I am sure Sammie is the same way. I agree with you it is just not fair why our babies had to struggle. However, despite all those struggles we have the best children in the world. Remember no one can take away Sammie's magical smile, no one can take away her determination, and no one will fight or love her more than you will. So, be mad today but know tomorrow will be a better day. xoxo

Heather said...

Please email me! I have a question about your blog :)

Kristen said...

I have had all these same feelings. It's not easy. I'm so glad to know we are not alone. Always here for you, even if it's miles away.

laurelsmom said...

Damn it! :)

Anonymous said...

Big ((hugs)) to you! Although my son can walk, I do know that "damn it" feeling all to well. It sucks watching your child know what they want to do, but for some reason their body just doesn't listen to their brain. It is so, so tough.