Updated

First up, a PNH update. It’s been awhile since I’ve posted anything about PNH because there really hasn’t been anything to say. My counts have been stable for the last couple months, something that I haven’t been able to say for over a year. They are low but they are stable and no longer creeping down so we will take it! My body is so adjusted to these levels that it just feels normal to me. I don’t get sick often, I don’t bruise a ton in spite of super low platelets and an incredible knack for running into things, and I don’t feel like my anemia causes me much trouble. I get tired and achy sometimes but it’s very manageable, especially since I have a super husband who takes excellent care of me whenever I need it 🙂 So in the world of PNH, it’s all good in the hood.

In the realm of life without kids, things have been pretty good there too. I’m feeling pretty good about taking all the pressure off, letting go of the feeling that it’s all or nothing right now. Justin and I are really looking forward to trips we are hoping to take over the next year or so which is obviously something that wouldn’t be possible with a baby. Things are good now just the two of us without the stress that surrounds the decisions required to make it three. We talk about adopting every once and awhile and it is definitely something that we are considering, whether it be domestic or foster, but it is not something that we are feeling the drive to do any time soon. For now, it’s just the two of us and I honestly couldn’t be happier with that. This might be a good time to mention that Justin’s company just announced that the President’s Club (top 10% reps) for next year is Sydney Australia so I’m planning on a trip down under next March 😉 We are in it to win it!

Next up, a crochet update. I have to say I am pretty proud of myself for learning to crochet. I’m really enjoying it, it’s just so relaxing, and I’ve been able to make some really fun stuff. I’m also teaching a friend to do it so we can have some old fashioned knitting circles (obviously we’ll be crocheting not knitting, but knitting circle sounds vintage and we all know vintage is better…). I’ve made some infinity scarfs for gifts.I used this pattern and I am so happy with how they turned out. They came together really quickly, were super easy (even for a beginner like me) and they look fabulous and comfy cozy. Definitely fun to give as a gift! Last night I crocheted this little heart garland to use on a Valentine’s Day scrapbook page.I’m not gonna lie, this baby took me forever to make. But it was the perfect project to curl up on the couch with while Justin watched a scary movie (he loves them, I have nightmares). This is what I’m really loving about crocheting. It’s a relaxing creative hobby that I can do while still hanging out with people, and it doesn’t hurt that I can be comfy on the couch while working on it either.

Operation Welcome Justin Home last Friday was a success. The beef stew was delicious (or so I’m told) and he was hungry upon arrival so it was perfect! I also made some chocolate chip cookies that, if I do say so myself, are fantastical. I learned a new trick in my Food Network magazine to get the perfect cookie, browned on the outside, soft in the middle. You cook the cookies for 8 minutes at 425 degrees, then take them out and let them sit on the pan for 10 minutes. Every single one of my cookies turned out perfect, I highly recommend this technique!

A little Smash book update for those of you interested. I busted out the stamps yesterday and made some fun journaling cards. I actually used these little alpha stamps I found in Michaels dollar spot a couple years ago but never even took out of the package. Turns out I love them!I made these to go in the calendar pockets that I put in my book at the beginning of each month.I also made a few journaling cards with some other stamps I have. I don’t stamp a ton but it really is perfect for these kinds of things and I want to try to do more of it.Cute, right?

Today was the 12th, and if any of you are keeping track, that means it was Take 12/12 of 12 day (take 12 pictures on the 12th of each month). We went on a family outing with my mom and her hubby to the MN History Center so taking 12 pictures was no problem. There may have been a few more than 12… Hold on to your seats kids, I’ll be back with those tomorrow!

I mentioned in my last post that my uncle has been in and out of the hospital. He is now back in the hospital at Mayo because the ulcer is bleeding again. Things aren’t looking great so we are praying around the clock for him and for the doctors that are working on him.

Well, there you have it. You are officially updated. Hope you had a great weekend!

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Finally Getting There

As I look over the past two years since my diagnosis of PNH, I see that the biggest struggle I’ve faced has been in letting go of control over my life. Now to be honest, I of course never actually had any control over what was happening. But I did my best to feel like I had it by trying to figure everything out and make lots of big life decisions. I thought that if I could just learn everything I could about the disease, make all the treatment decisions I would need to make for a lifetime, and decide on our future as parents, that if I could just get all of that “done with”, that I would be able to file it all away and continue on with life as normal. Of course looking back on that now I realize how crazy that was. But when faced with a life change like that, I suppose we are all bound to go a little crazy for awhile.

These days though, I am doing better and better at letting go of the idea that I have to have it all figured out. The feeling that I need to have control is becoming a memory and being replaced by a sense of peace. I now realize that I don’t have to have it all figured out. Worrying about what my labwork is going to look like every two weeks isn’t helping me in the least. If my counts get too low and we have to add more treatment options, I can deal with that then. Worrying about it now simply extends the worry far longer than necessary. For now, my counts are stable and that’s all that matters. And I finally realize that I don’t have to decide on the if/when/hows of parenthood. If we are meant to be parents, one day it will just feel right and work out. We have explored all the options and we know everything we need to know about them to make an informed decision when the time comes. That time is not right now, but that doesn’t mean it will never be the time. Right now I am just enjoying the freedom and independence that comes with a childfree life. I’m looking forward to doing some more traveling and fully capitalizing on the great life that Justin and I share right now. Someday we may add a kid to that great life, and it will be incredible, I have no doubt. But for right now, it’s just us and it’s perfect. I don’t want to miss this time in my life because I was too busy worrying about the future. I can’t even begin to tell you how great it feels to finally reach this point. To feel like I can simply enjoy life without trying to figure it all out right now. I truly feel like I have finally handed the reins over to God and am no longer trying to push against him. I feel more at peace than I’ve felt in two years and it feels amazing. There is no doubt that there will still be days when I struggle with trying to take back control, but I am finally getting there, finally getting to a place of peace and joy in the moment, a place that I believe God has been pushing me towards for two years now. Life is good!

Ghosts of Christmas Past

As I decorated the tree for the past two Christmases, my mind was focused on what that tree would look like when we had a baby. I would hang the ornaments and debate which ones I would box up to make room for the inevitable slew of baby’s first Christmas ornaments that would accompany our child. I didn’t fully enjoy the season because I was so focused on the future and what I dreamed our holidays would soon look like.

Two years ago, the PNH test came back positive on December 2. At first it was a huge relief. We had been looking for an answer to what was wrong since August so we were all just overjoyed to have an answer. But the following weeks were filled with research, and the realization that the diagnosis had serious ramifications regarding our family starting plans, as well as the fact that the disease was more serious than I had originally thought. I spent the month researching PNH and adoption, failing to really enjoy the holiday season much at all. All my thoughts were on the future and what we were going to do to add a member to our family.

Last Christmas, I received an incorrect diagnosis for an infertility problem in November and so once again, my holiday season was spent researching and undergoing tests. I spent that Christmas worried about whether or not we would be able to get pregnant, along with worrying about my blood counts that were on a downward march for no explainable reason. But the doctor had a plan for us and I believed that come next Christmas, there would be a little one to celebrate (fortunately, I do the research and quickly realized that the diagnosis didn’t quite fit so I got a second opinion. Who knows where we would be at right now if I had just blindly followed the first doctors instructions!). When I look back on that holiday season, all I really remember is worry and an unhappiness that my life didn’t look like what I wanted it to.

This Christmas though, as I hang each ornament, I will be focused on the amazing life that I do have. I will not debate the worth of each ornament and plan its retirement to the back of the closet. I won’t spend my time thinking that Christmas will be better once we have a kid. Instead, I will enjoy every minute of this magical season. I will cherish the special times I have with my husband and will not discount them because they don’t include a child. I have traveled a long and hard road of letting go of my plan for my life and I have finally come to a place where I am at peace with the life that God has blessed me with. I don’t know what God has planned for us. I don’t know if the answer to children is no, not now, or not in the way you have planned. But what I do know is that I finally have peace, and I am content to trust in God’s plan for us. And for the first time in far too long, I am going to enjoy every minute of our Christmas season just the way it is, perfect.

Three times I pleaded with the Lord to take it away from me. But he said to me, “My grace is sufficient for you, for my power is made perfect in weakness.”  2 Corinthians 12:8-9

Holiday Album

Disclaimer: If you are not a scrapbooker, this post is going to bore you to tears. Just fair warning!

So, I discovered that the best way to get into the holiday spirit and get motivated on Christmas projects was to just dive right in. My pictures are ordered for our Christmas cards and my album is ready to start filling up with holiday memories. Now I am raring to go! I’ve mentioned a few times here that I want to do a December Daily album. It’s a project inspired by Ali Edwards (you can find more info here) where you create an album and document everyday of December. The idea is to include both holiday memories and daily life with the goal of really getting more out of your holiday season while documenting what life looks like throughout the month. My take on it is going to be just a little different. I’m going to start with Thanksgiving and maybe go through New Years Eve. To me, Thanksgiving is the kick off of the holiday season and we do lots of Christmas stuff that weekend so I feel the book would really be missing something if I left that out. I am going to do my best to document something from each day but I’m not going to worry too much if I miss a day or two here and there. Let’s face it, not everyday is that interesting. I am going to take lots of pictures when I have good lighting of decorations and ornaments that I want to document and I will use those on days that I don’t have anything else for. So, for the album itself I decided to finally use the binder mechanism that I have been hoarding saving from a few years ago when the old book binders were trendy. I made lots of these as gifts for others but never made one for myself so I thought this was the perfect project to finally make myself one! I’ve made some pages so far but I’ve kept it pretty simple. I know that I will have a hard time if I really make pre-made pages so I decided to just make some slightly decorated pages and a few pages that won’t have any pictures. My plan is really going to be to just throw stuff in there as I go. The pages that I have made are in no particular order so I’ll just pull from them as I go. Sometimes it’ll just be a picture, sometimes several little pictures, some journaling, some collected stuff from daily life, etc. I have a little rubbermaid and a paperholder filled with all my Christmas stuff so it’s all just ready for me to grab what I want. Having it all in one place makes it so much easier! Plus, looking at all my holiday scrapbooking goodies has me super excited to get started! I cut up these baseball card holders and put some fun stuff in them, then I’ll add pictures to them on days that I have more than one picture that I want to include.I made a page out of a paper bag that I plan to slip a long journal entry into.I used my slice to cut out a bunch of shapes from the book pages that I tore out of the book, then misted them to give them some fun color. I feel like this is a fun way to add some continuity to the book since I’ll be using all kinds of different lines of scrapbooking goodies. This will help tie it all together (or at least so I hope!). So there you have it. I may add a few more things here and there before Thursday, and I’m planning to cut out some numbers from brown and turquoise cardstock with my slice, but it’s pretty much just waiting for the goodies to start piling in. I’ve wanted to do this project for so long but I always put if off thinking I should wait till we have a kid. Now that my book is ready to go, I am feeling super excited to document our life just the two of us. It’s been a bit therapeutic for me I think, a kind of letting go of what I thought my holidays needed to look like and just embracing the amazing life we have.

Celebrating an Anniversary Peterson Style

We don’t just celebrate our anniversary for one day around here. No siree. We like to do it up and take advantage of the excuse to spend some extra special time together. We typically like to go out of town for our anniversary (hello Bahamas and Hawaii, good anniversaries indeed) but a big trip just wasn’t in the cards this year and since we’ve been out of town so much lately, a little trip up north wasn’t sounding too appealing. So we decided to go the staycation route. We kicked things off with dinner at a restaurant in St. Paul that I have been wanting to try for a year now called Caribe. It’s a tiny little Caribbean restaurant (I was hoping to recreate our Bahamas trip the best I could without a plane ride) and the food was nothing short of spectacular. Red snapper with coconut curry bananas… Delightful in every way. We will most definitely be back.The next day we headed to the zoo, because the zoo makes us happy. It was a beautiful fall day and the animals were all out and about which made it extra fun. The highlight for the zoo trip was definitely the otters who were playing like crazy. They were so fun to watch and I finally got some pictures of them.More from the zoo gallery later though. Moving on, we headed to the Mall of America after the zoo for happy hour at Crave (our favorite MOA spot to eat) followed by some time just walking around and hanging out. It was a great date day, very us. Today we stayed home, took the kiddo for a long walk and I made J banana foster french toast. (At this time I feel I should mention that our dog has severe allergies and therefore has hardly any coat of her own so she needs lots of puppy clothes to keep warm. I swear I am not a Paris Hilton wannabe!) It was a perfect little staycation to celebrate 9 amazing years together. We are looking forward to celebrating our 10 year anniversary in Puerta Vallarta. We’ll be celebrating a little early since we’ll be down there for my sisters wedding on October 11 but that works just fine for us. Romantic anniversary on the ocean is just as effective if it’s a month early 🙂

Blog Your Heart

Stephanie Howell issued the blog your heart challenge again, kind of a monthly thing, so here we go.

1. I am feeling oh so very happy to be home right now. I am incredibly blessed to be able to travel with J but I also love to be at home, especially in the fall, so I am very happy to have a bit of a break from the traveling. We were gone a lot over the last two months which has really turned me into a homebody. I am just loving snuggling up at home and having the time to catch up on things around the house and actually do some cooking.

2. I am feeling frustrated with my disease right now. Sometimes I am not really bothered by all of it and just feel very passive towards the whole thing. But other times it can start to feel like a straight jacket that’s constantly restricting me. Lately I’ve been falling into the latter case. I’m frustrated because it doesn’t seem like the drug is working, at how much it costs, at the fact that I feel rundown all the time and doing 25 minutes of yoga takes all my energy for the day, that we never seem to be able to find any real answers about what’s going on… There’s a rather long list of PNH frustrations in my world right now. Add on to that our health insurance changes next year to a $1500 out of pocket total per person, which means I will have a $1500 bill by the end of January. Not exactly the most exciting way to spend our money. Like I said, lots of frustrations.

3. Having vented about the frustrations though, I am reading a book called The Land Between that examines the Israelites journey through the dessert that has been serving as an excellent reminder that these challenges and frustrations will help mold me into a stronger person if I let it. I’m doing my best to remember that and to do everything in my power to use my struggles to make me a better person, into the kind of person that God wants me to be.

4. I am kind of struggling to find my voice with this blog. I want to be a better writer, the kind of writer that I would enjoy reading. I am also struggling in what exactly to share here. I started it to share my PNH and childless experiences, but I worry that talking too much about those things will make me sound whiny. I want to tell my story so that others out there who are going through similar experiences will know that they are not alone. And I want other PNHers to be able to see what my life with the disease looks like so that we can compare and learn from each other. But I worry that people are going to read it and think “oh here she goes again, droning on and on about her problems.” I also want it to show what my life looks like without kids because I feel like it’s hard to find other scrapbookers specifically, but really anyone in general, that share their lives without children. Don’t get me wrong, I love reading other blogs where mother’s share their experiences and funny stories. I just want to feel like there are others out there who don’t have kids and are still living and scrapbooking.

5. I am still hopelessly in love with my iPad. I don’t think this obsession is going away anytime soon. Every time I think I’ve discovered all I need to know about it, I find something new and completely amazing that I can do with it. Last night I took a bubble bath while watching a show on it. The height of relaxation, I assure you.

6. I hate shoe shopping. Apparently my mother and sister got all of the shoe love in the gene pool because I absolutely do not enjoy looking for shoes one bit. So, to eliminate the need for much shopping in that department, I follow a general rule of one brown pair and one black pair for each kind of shoe I need (essentially flip flops, fake uggs, and boots). My mother thinks I’m crazy. Every once and awhile I will breeze by a shoe rack and something will catch my eye and come home with me, and when it does, they are amazing. That is how my awesome high boots ended up in my closet. But, I have been without black boots for two years now and I have been unable to find anything I like in the limited amount of time I’m willing to look. The last pair I bought were roughly 6 years old and were incredibly out of style, and the only time I felt motivated to replace them was when I wanted to wear a black/grey sweater and couldn’t because I didn’t have any shoes to match. It should be added that I put about a $35 limit on my shoes. I don’t like buying them, therefore I don’t want to spend money on them. This makes my best friend think I’m crazy. Apparently my shoe issues are crazy. Anyways, I finally scored an adorable pair of black boots, on my budget at Marshalls today. I am a very happy girl who will not be going anywhere near the shoe racks for some time. I am already dreading needing to replace my favorite brown flip flops of all time next summer as they are on their last leg.

7. My shoe issues seem to stem from an incredibly high level of practicalness that I cling to which can be debilitating at times. Spending money stresses me out and so I am incredibly practical with how I spend it. It can make it a bit difficult for me to buy things that I don’t necessarily “need.” It can also lead to quite a bit of overanalzying every single purchase I make, which gets a bit exhausting. Do I really need to justify the $3 bottle of nail polish I bought? Probably not. These are the things that keep me up at night. Then add in an unexpected big expense like a vet bill and I am sent over the moon with anxiety. J is constantly yelling at me (in a nice way of course) to lighten up and not worry so much. I’m working on it. In the meantime, it saves us a lot of money.

And because posts are just so much more fun with a picture, here are a few from Sioux Falls that I haven’t gotten around to sharing yet.

Laughing Through the Tears

Ok, in the interest of full disclosure, this title is a bit misleading. I’m actually doing quite well these days and there have been few if any tears in regards to are likely permanent “childfree” situation. However, having kids was still my first choice for our future, my “plan” if you will, and letting go of that will always be difficult. Things could always change, and I reserve my right to change my mind at any time. Who knows, maybe we’ll turn 40 and decide it’s time to adopt a foster child. Anything can happen. But right now, the future is looking child free and I am okay with that. To keep things in perspective, I am always looking for the positive, and the humor when possible, which leads me to this little newspaper bite from 1957.

Ann Landers’ famous “The Childless Couple”

There is nothing sadder than a childless couple. It breaks my heart to see them relaxing around swimming pools in Florida, sitting all suntanned and miserable on the decks of their boats — trotting off to Europe like lonesome fools. It’s an empty life. Nothing but money to spend, more time to enjoy and a whole lot less to worry about.

The poor childless couple are so wrapped up in themselves, you have to feel sorry for them. They don’t fight over the child’s discipline, don’t blame each other for the child’s most obnoxious characteristics, and they miss all the fun of doing without for the child’s sake. They just go along, doing whatever they want, buying what they want and liking each other. It’s a pretty pathetic picture.

Everyone should have children. No one should be allowed to escape the wonderful experience that accompanies each stage in the development of the young — the happy memories of sleepless nights, coughing spells, tantrums, diaper rash, debts, “dipso” baby sitters, saturated mattresses, emergencies and never-ending crises.

How dismal is the peaceful home without the constant childish problems that make a well-rounded life and an early breakdown; the tender, thoughtful discussions when the report card reveals the progeny to be one step below a moron; the end-of-the-day reunions with all the joyful happenings recited like well-placed blows to the temples.

Children are worth it. Every moment of anxiety, every sacrifice, every complete collapse pays off as a fine, sturdy adolescent is reached. The feeling of reward the first time you took the boy hunting — he didn’t mean to shoot you, the lad was excited. Remember how he cried? How sorry he was? And how much better you felt after the blood transfusion? These are the times a man with a growing son treasures — memories that are captured forever in the heart and the limp.

Think back to the night of romantic adventure when your budding daughter eloped with the village idiot. What childless couple ever shared in the stark realism of that drama? Aren’t you a better man for having lived richly, fully, acquiring that tic in your left eye? Could a woman without children touch the strength and heroism of your wife as she tried to fling herself out of the bedroom window?

The childless couple live in a vacuum. They fill their lonely days with golf, vacation trips, dinner dates, civic affairs, tranquility, leisure and entertainment. There is a terrifying emptiness without children, but the childless couple are too comfortable to know it.

You just have to look at them to see what the years have done: He looks boyish, unlined and rested; she’s slim, well-groomed and youthful. It isn’t natural. If they had had kids, they’d look like the rest of us — worn out, wrinkled and exhausted.

I read this to J last night and we both laughed till we cried. Ok, maybe J didn’t actually have tears rolling down his cheeks, but I did. It got a little tricky to read. I just love it. It’s not that I don’t love kids, it’s not that I wouldn’t be incredibly happy as a mother. I have no doubt that I would be. But since God seems to have other plans for me, I can enjoy all the benefits that go along with this new plan. I refuse to spend my life feeling like a lesser person because I am not a parent. I refuse to be pitied, or pity myself that my dream of being a mother will not come true. It is incredible how quickly people switch to pity when they learn you can’t have kids, shortly followed by assurances that it will all work out, so and so has a miracle baby, or suggestions to pursue adoption. It is apparently impossible to believe that I just might be ok, that there is a lot to life without children and that I plan on enjoying every minute of it. This wasn’t my plan for my life, but that doesn’t make it a bad life. It seems though that J and I are the only ones that get that. I appreciate the concern, and one day it may be really hard and I may feel terribly sad. I have no doubt those days are out there. But for the most part, I am happy, and I will remain happy without children. It is possible. So let’s all make a deal, I won’t pity you when your mini-me has you covered in bodily fluids and you haven’t slept for days, and you don’t pity me that I am squeaky clean and well rested. Deal? Deal.