Clarity

I was angry. Black cloud following me everywhere I went kind of angry.

I had stopped posting updates on Peanut because I was getting too frustrated with people saying “I knew she could do it” or “of course she did!” when I announced an accomplishment. I would think, “No. No, you don’t know. You have no idea. You haven’t been here for the last month while we struggled over and over again through the tears and failures that led up to this one moment. How can you just sum this moment up so casually?!” And when someone would say , “It can’t be that bad.” or, “Can’t she just do this?” I would want to fall apart and cry. I would think, “How can they think this is so simple?”

I would hurt for Peanut because the first thing many people would talk about or ask about was her disability. And many would point out what she wasn’t doing or can’t do and told me what I should do to “improve her life”. I would feel the weight of the world on my shoulders trying to satisfy everyone. Trying to explain why we’re doing this and not that would exhaust me, but I didn’t want to let anyone think I was doing anything less than everything possible for Peanut.

People would ask for updates as if they deserved it. Even when nothing “big” was going on. As if she was some ongoing experiment. And when I was vague, some would push as if I was being rude not to keep them informed. And it hurt so badly every single time.

There were so many suggestions. ALWAYS suggestions. ALWAYS ideas. So many. So many that I began to think that people thought we weren’t doing enough. Because why else would they keep telling me about more and more and MORE? It began to hurt too much, so I stopped posting things. I stopped sharing. I pushed everyone away because I couldn’t handle it without burning down bridges.

And most of all – It would disappoint me to the extreme when people never thought to ask what Peanut wanted in all of this.

So that’s when I removed myself. I took the deepest, most calming (metaphorical) breath of my life. I let all of the worry, anxiety, frustration, anger, offense and sadness out. And an amazing thing happened.

I didn’t care anymore.

I didn’t care what everyone else thought.

Not in a “bugger-off I’ll do what I want” kind of way. But in an “agree to disagree and move on” kind of way.

I have taken time to just breathe and realize that, no, people probably never really will understand. And that’s okay. They don’t need to understand. Understanding is irrelevant. What’s important is supporting Peanut and encouraging her. And I have learned to teach people the right way to encourage her. To set their expectations to her level, not theirs. To respect what she wants and needs. That maybe she can’t handle this overwhelming regiment of therapies, miracle cures and testing because she is a three-year old little girl with three-year old little girl needs. And many of them have nothing to do with her special needs.

I have realized that speaking up, no matter how much I don’t want a person to dislike me or my views, is imperative. And I have realized that speaking up doesn’t always mean a fight. Most people aren’t looking for a fight. They’re looking to understand because they want to help. And that’s something I can get behind. So I have been speaking up when necessary and shutting my mouth when necessary. I have been educating and correcting where I felt necessary. And I have learned that if someone is going to dislike me or my views on what’s important for Peanut, then that’s their problem to work through. Not mine.

And you know what? An amazing thing is happening. People are understanding, respecting, stepping back or stepping up.

Ironic, huh?

Most people never will truly understand what we go through on a daily basis. And I have realized that that’s not my problem. Nor is it anyone else’s. The only one who matters in all of this is Peanut. And if she’s satisfied with where we’re at, then that’s good enough for me.

Peanut’s Appointment With Orthopedics

Yesterday we had our appointment with Peanut’s orthopedic surgeon. I love Dr. T because he is not only recognized and respected in the field of pediatric orthopedic medicine (so I know he knows his shit – inside and out) but he’s been with Peanut since the beginning. He remembers her and always greets her with a hug, a big smile and lots of soft-spoken praise. While he doesn’t have the best bedside manners (he’s a mumbler and tends to drift off) he’s always had Peanut’s best interest at heart. That’s all I care about.

That said, even though he has her best interest at heart, he tends to follow the typical path to a child with spina bifida, a disability that is startlingly similar to Peanut’s diagnosis. He doesn’t really try to push the envelope. But I get it. When he only sees her once a year for follow-up appointments, who can blame him? A lot can happen in a year and he’s the big picture guy. He’s the one that catches anything leftover that her therapists, pediatrician and other specialist doctors miss.

He hasn’t seen Peanut for at least six months if my memory is correct. And in the last six months, Peanut has blown every typical expectation of a child her age with her limitations out of the water.

With a nuclear bomb.

She’s paralyzed from the waist down-
but she’s standing.

She’s paralyzed from the waist down-
but she’s walking with assistance.

She’s paralyzed from the waist down-
but she’s getting up the stairs.

She’s not even two years old-
but she’s saying and doing more fine motor projects than most kids her age.

She’s not even two years old-
but she’s demanding a wheelchair because she can control one.

As I updated Dr. T – who, might I remind you, has ‘seen it all’ – all he did was say a genuinely amazed “wow”. He was, for the most part, speechless. I was so proud of my little Peanut in that moment. I’m always proud of her, but I was extra proud with-a-cherry-on-top kind of proud in that moment.

And he responded with a shocking performance of his own. He deviated from his typical directions. He made a referral to a new clinic at Children’s Hospital of Wisconsin to help her keep pushing herself and he took a huge leap of faith on Peanut and told me NOT to get a stander like we had originally decided. Instead, he opted to have some long-leg braces made for her so she could continue to walk and stay mobile.

And that’s why I love Dr. T. Because he knows my little girl enough that, even when she shocks him by exceeding his expectations, he quickly adjusts to her needs and shows us the path to her next adventure. I’m so grateful to have such a fantastic team of doctors right in our own backyard that are so able and willing to give my little girl everything she needs and deserves.

A Year in Review: Pictures

How convenient that New Years Eve landed on my Monday post! In light of the day, I thought it’d be fun to go through my millions and billions of pictures from the year and pick out my favorite pictures from each month. (Which was impossible… I might have to do a part 2… and a part three…) Enjoy!

JANUARY

We had unusually warm weather in January and Peanut LOVED it so much she graced me with one of her rare genuine smiles!

We had unusually warm weather in January and Peanut LOVED it so much she graced me with one of her rare genuine smiles!

FEBRUARY

Bonus pic: I love this picture because it reminds me of that innocent wonder of a child. Buddy got this lantern for his birthday and LOVED taking it to bed with him to watch the light shine in the dark.

I love this picture because it reminds me of that innocent wonder of a child. Buddy got this lantern for his birthday and LOVED taking it to bed with him to watch the light shine in the dark.

MARCH

A friend of mine is a photographer and she took pictures for me for the girl's first birthday. I absolutely love this one!

A friend of mine is a photographer and she took pictures for me for the girl’s first birthday. I absolutely love this one!

bonus bonus picture: I think it could be argued that I have triplets, not twins...

bonus pic: I think it could be argued that I have triplets, not twins…

APRIL

Bunny ears on kids has to be one of the cutest things to ever grace this planet.

Bunny ears on kids has to be one of the cutest things to ever grace this planet.

MAY

Husband and I drove to Colorado from Wisconsin (approx. 17 hours) in our mini van with three kids AND our 60+ pound dog. This hiking trip alone made it all worth it!

Husband and I drove to Colorado from Wisconsin (approx. 17 hours) in our mini van with three kids AND our 60+ pound dog. This hiking trip alone made it all worth it!

We're lucky to live only a few miles from Lake Michigan. Buddy loves coming to the beach!

Bonus pic: We’re lucky to live only a few miles from Lake Michigan. Buddy loves coming to the beach!

JUNE

How can you not adore this girl?

How can you not adore this girl?

JULY

This is an especially fantastic picture for me. :) Peanut was really excited to try out demo wheelchairs.

This is an especially fantastic picture for me. 🙂 Peanut was really excited to try out demo wheelchairs.

AUGUST

Buddy loved dinosaurs before we took him to the dinosaur exhibit at the zoo. But now... he's borderline obsessed!

Buddy loved dinosaurs before we took him to the dinosaur exhibit at the zoo. But now… he’s borderline obsessed!

SEPTEMBER

The loves of my life. Husband graciously posed for a picture for me on his birthday.

The loves of my life. Husband graciously posed for a picture for me on his birthday.

OCTOBER

Peanut's first steps. There was no way I could skip over this picture!

Peanut’s first steps. There was no way I could skip over this picture!

I love about a million and one things about this picture

Bonus pic: I love about a million and one things about this picture

NOVEMBER

The kids LOVE to skype with my sister who lives on the east coast.

The kids LOVE to skype with my sister who lives on the east coast.

DECEMBER

Oh. My. Gooooood.

Oh. My. Gooooood.

 

For Once, I’m Not Complaining

So – Quick recap.

Peanut was born on 3-15-2011, paralyzed from the waist down. She also had clubbed feet. There were a couple of other health issues, but these were the two most significant. Over her first year, she had been through physical therapy, speech therapy, occupational therapy, neurological exams, a broken leg, a dislocated hip, invasive surgery, genetic testing (ie: blood draws and skin biopsies), an EMG (electromyography), multiple MRIs on both her brain and spine, daily injections for two months, more x-rays and ultrasounds than I can currently count, Orthopedic exams, Ponseti Method casting for her clubbed feet and, of course, I can’t discount her well baby appointments and her immunizations.

Through it all there have been multiple emotional, physical and financial hiccups and setbacks. Yet, through it all, she has been an extraordinary little fighter. She just never quit. Everything we throw at her she fights her way through like a champ. She continues to push herself to her physical limits, sometimes even to the point of breaking them. Cognitively, she is extremely observant and intelligent and easily keeps up with, and even sometimes surpasses, her peers. She refuses to be left behind.

Because of her drive, I decided to look into wheelchairs a little earlier than most kids get them. She’s 16 months old now; most kids get chairs closer to 2 1/2 -3 years old. I had a strong suspicion that she could do it though. I felt like once I put her in a chair, she would figure it out.

I was right.

After a couple of weeks of extreme vigilance and determination, I found a vendor for equipment for kids with physical disabilities. He is the superstar of vendors and I got him, I was so excited. After everything Peanut had been through, I so badly wanted to give her some kind of independence. I wanted her to feel like she was at least in control of something in her whirlwind beginning to life.

So, Peanut got a demo to play around with from the vendor and husband and I moved into the next stage. Buying a wheelchair. We planned to meet with the vendor (and by we, I mean “I”) and get Peanut’s measurements and discuss what parts we would need to best fit Peanut’s needs. That was coming up in the next week or so.

Well… it looks like it’s not going to happen. At least not until the beginning of 2013. We have yet another setback and this one’s a DOOZIE.

But for once, I’m not complaining, because the doozie is that husband got a job offer!!!!!

He has already put his two weeks in at his current job and will be starting his new one mid-August. His current job is great and we both love his co-workers dearly. It’s a wonderful company and they’ve been more than accommodating for husband and I as we’ve worked through everything with Peanut. Really, the only problem was that the company was just too small to afford competitive health insurance premiums. We have an unbelievably high deductible. UN-believable.

Because of this, husband reluctantly started looking into a couple of jobs that someone had contacted him about. He got a job offer from both of the places that he interviewed with! Talk about an ego boost for husband!!! I was so happy for him! I have always known that he’s an incredibly selfless and dedicated employee for any company, but it makes me so happy to know that it’s visible to other companies as well!

So now, husband’s new job has moved up from the enrty-level position, it’ll be better pay, an we’ll have an unbelievable deductible (thousands less than we’re currently paying). And if that wasn’t enough, it’s actually a company that he had applied for right out of college, and the position is doing something he has always wanted to do! And if THAT wasn’t enough, his new employer has opted to waive the 60 day waiting period for insurance coverage. We will all be covered starting his first day! And if that wasn’t enough, He’ll be getting a sign-on bonus right before Christmas!!! AND IF THAT WASN’T ENOUGH, the job is located back home!!!!!!! So once it’s reasonably possible, we will be moving to a new home closer to our friends and family!

AAAAAAAAAAAAAAAAAAAHHHHHHHHHHHH!!!!!

I mean… wow.

WOW.

I can’t even express how happy I am, both for husband and myself and our kids. I am, and always will be, husband’s biggest advocate, and I can’t say enough good things about him (Okay… I know I complain, but it’s all out of love and/or humor. I swear!). So I can’t even tell you how happy I am for him. He deserves this. He. deserves. this. I will pound this into your brain. HE. SO. DESERVES. THIS.

He has worked his butt off from the very first day that I’ve known him.

In high school he voluntarily worked three jobs at one point to save up for college. He was just shy of a cumulative 4.0 and constantly challenged himself academically. He was president of this society and captain of that team. He graduated with high honors and was one of two speakers for his class for the graduation ceremony.
In college, he worked at his internship and additional on-campus jobs to help pay for it. On top of multiple jobs, he participated in athletics, once again making captain, and became an RA (residence assistant… the person in charge of one of the floors in a dorm). He was up well past midnight every night studying and made the Dean’s list up until graduating.
After graduating he went straight into working without any break in between. He has gone in to work on numerous Saturdays without complaint, sometimes in the middle of the night, to finish testing products. In the three years since starting his job he has never called in sick and only left early once at his co-worker’s insistence. And even then he tried to avoid it. He never makes excuses, never complains and gives more than he is asked for. And this can apply to his family, his job, his faith and his friends.

And, his biggest feat of all. He dealt with ME through all of this. I know… w.o.w. Like I said, I will always be his biggest advocate.

Now, back to the wheelchair before I explode from gushing… While this new job is amazingly astoundingly stupendous wonderful for us, we now have to start over with this new deductible. After, of course, JUST meeting our current deductible. Everything that we will have to spend on Peanut’s new wheelchair will be applied to this new deductible now. We decided it just doesn’t make sense to spend the money on the wheelchair in what remains of 2012 and then have to start over AGAIN on a new deductible at the beginning of 2013. We are going to wait until January and attack it in the new year. Besides, it’s only four-ish months longer to wait. It’s really not a big deal at all in the big picture.

So, after getting so far and getting so close to getting my dearly beloved Peanut her piece of freedom. It slipped through my fingers. *sigh* But, like I said, for once I’m not complaining.

For Peanut, 2011 was the year of fighting. 2012 is the year of hope. And now 2013 will be the year of independence.

And for Husband, 2012 is the year that he finally got what he has worked so hard for!

HIP-HIP-HURRAH!!!

MRI results

THE MRI CAME BACK NORMAL!!!!!!!!!!!!!!!

Peanut’s pediatrician called as soon as she got the results back. (I just have to say, I love our pediatrician. She is so doting and loving towards the kids and she still calls me outside of her working hours to check in on Peanut to make sure everything is going well. I don’t know how I got so lucky to have such a wonderful Pediatrician!)

The first thing she said was that Peanut’s MRI looked extremely reassuring. There was absolutely no sign of blood clots, fluid buildup (from an infection) or tumors of any size. In fact, all they saw was an excess of fatty tissue and atrophied muscles. Both of which we already knew about. Everything else looked very healthy under the circumstances. YAYAYAY!!

The most reassuring thing she said was that they looked closely at her lymph nodes and they looked perfect. Her lymph nodes were what I was most concerned about since my Dad passed away from Lymphoma. The chances of her getting cancer at such a young age is very minimal, but honestly, the chances of her being born paralyzed were also minimal. I was going off of the fact that anything is possible no matter what the odds, and Lymphoma was now in my immediate family. It was cause enough for concern.

I can’t even begin to express the amount of happiness and relief I’m feeling right now! We’ve avoided another worse-care scenario. I don’t know how we continue to be so lucky, but I’m definitely not going to complain!

A Turn of Events [part 2 to Lion’s Den]

In a surprising turn of events, Husband has asked me if he could take Peanut to the hospital tomorrow. As much as it pained me to let go of the reins, I said yes.

You see, Husband is the last person you would ever find in a hospital, voluntarily or otherwise. He is a wonderful man, but he just can’t handle healthcare or healthcare buildings. He avoids them like the plague. That’s why this request really struck me. I think he knows how hard this is for me to go back and have to fight another fight for our Peanut.

Normally I would be afraid to let someone else take care of her because I need to be there in the midst of everything and I need to know what’s going on. But this time I just don’t know if I can go without getting genuinely upset. My reserves of “strong Mom” are pretty low, and as much as I hate to admit it, I could use some help.

So, I will be spending the remainder of the night coaching husband on everything he will be doing tomorrow down to the way he walks if I’m not satisfied with it. He will be bringing every single comfort item and snack I pack for Peanut without complaint. He will be getting up at a god awful early hour to get ready and get down to the hospital to check in by 8 AM.

He has been graciously allowing me to call the shots. Once again, I’m so grateful to have such a wonderful husband. He will be calling me with updates and taking notes along to pass on to the different clinics that I was going to “do business with” while I waited for the MRI to finish.

I’m terrified that something is going to slip through his fingers or he will forget to ask something, but he kindly pointed out that I need to give him an equal share of the parenting once in a while.

He’s right. I can’t do everything.

So, I will fortunately/unfortunately be sitting this trip out tomorrow and biting my nails down to nothing while I wait eagerly by the phone for calls from Husband to update me on Peanut’s progress.