Tuesday, December 23, 2014

H is For...

I'm here at the infusion center (got to take a couple month break from visiting this place) and so here I am back in blog land. 

As it does for most, the fall flew by and it's hard to believe that It's Christmas Eve Eve. 

We've had a great holiday season full of Santa visits, gingerbread house decorating, a trip to the snow and time with our friends. We are blessed as always with a beautiful life. 

But we have also been dealing with some pressing health issues for me. Let's face it, my body does not want to be ignored. 

The best thing that H is for is our HeRo, and boy does he love that letter too. Always asking us to write it for him. 

But H has also meant a hernia and hysterectomy for me. The joy. I had the hernia fixed in an outpatient surgery the week of Thanksgiving and all went well. 

I will be having a hysterectomy on January 5, after months (years really) of dealing with fibroids that are growing at an alarming rate and not responding to
Other treatment. 

I'm nervous to be heading into major surgery again as this will not be a routine hysterectomy. It will be full open. With lots of delicate work to detach my prolapsed uterus from my sacrum all while protecting my Koch pouch. 

I am confident in the surgeons abilities and my awesome colo-rectal surgeon will be assisting. But my past history has proven to be a little wild when it comes to post surgical weirdness so I'm trying to prepare myself for this roller coaster again.  Hopefully it will be a smooth and boring ride;)

Adding to my feelings is the fact that this is my first major surgery since HeRo was born. I know he's only 2 and he will be fine and in the best hands, but the thought of being away from him for 4-7 days and not being able to lift/carry him for 6-8 weeks makes me terribly sad. I love that boy more than I can eve express and he's my best little buddy. And of course my sweet hubs will be pulled in multiple directions. We spend so much time together and I know this will be hard on all of us. 

Im so thankful that my mama will be here for two weeks and for our amazing nanny who is really like family now. Those two are going to make it all so much more bearable. 

I'm looking forward to March when it's all over and behind us. I'll be feeling better and down another useless organ and moving forward. 

It's never a full moment and all of this is just another reminder that chronic illness is forever in all it's ebbs and flows. 

For now I'm going to focus on spending the holidays with my boys and enjoying the magic a toddler brings to it all. 

Wishing everyone a Merry Christmas and happy and healthy 2015. 

Friday, August 15, 2014

August is awesome

I like August. We start it off celebrating our wedding anniversary and end it with our little HeRo's birthday!

This year the hubs and I have been married for 9 years! Last year in single digits. Woo hoo.  Dang I love this guy and every year I love reflecting back on that wonderful day and all we've done and been through together and then looking forward to what may lie ahead. I've said it before, but I'm so proud of us and also continually humbled at how lucky we are to have each other. Our life is not an easy one for a number of reasons, but it is truly beautiful. Love you babe. 

And then there's this guy! How can he be turning 2 already?! He is just too darn cute and spunky and oh so cuddly. It's like we blinked and he is a big boy. Talking (mostly his own language, but very expressively), figuring out the world around him and showing us his personality.  It's so great and amazing to be his mama. I know he will understand things in life earlier than others because of my health and  the story of how our family came to be. But I hope that it makes him more empathetic and tolerant towards others. He's a love bug, giving bear hugs and kisses.  Bad he already has picked up more than we realize. 

The other day one of the pads I use to cover my storms fell out of my bag. He picked it up and tried to put it on him self like he sees me doing everyday. Then toddled over and gave it to me. It was heart melting and made me tear up. I know. He doesn't know any different but something in that moment struck me both in a proud and sad way. I suspect this theme will reoccur over and over in our lives. 

As we prepare to celebrate this little man. I can't help but swell with happiness at the joy and gift he is. Happy birthday (early) little man. 

And aside from these two great guys I get to call mine, we've gotten to celebrate a few other people we love to the moon and back this month. It's all been quite lovely really. And always reminds me that although I struggle health wise, my village is as amazing as they come. What more could a girl want? 

Happy August!

Friday, July 11, 2014

Best Laid Plans

I'm back. Are you surprised? 

This week has been busy with appointments and general toddler-hood. 

Here's how it went down:

. Monday. We went to meet Batman with our friends at a locale summer kids event. HeRo was so brave. When it was time for our picture, he kind of sized up Batman, shrugged and then gave him a high five and posed for the pic. 

. Tuesday. I had an abdominal MRI. I was supposed to be there for 3 hours but ended up over 4. First they forgot to bring me my barium yummy ness, until after an hour I went and asked for it. 3 bottles and 45 minutes of choking it down they took me back to the tube. After 20 minutes they pulled me out to go walk for 15 minutes, the barium was stuck in my belly. 20 minutes later I was hooked back up and strapped back down and sent back in. 20 minutes after that I was being pulled back out,again!  My bowels were moving so much, I could feel them bouncing like a crazy alien baby was in there. The radiologist had to be called in to give me a shot to relax my bowels so a clear picture could be taken. It worked, yay. Back in for 30 more minutes to get the images. And I could finally leave. I missed another appt but the technician was kind enough to call and cancel for me. The afternoon I had planned went out the window and I went home to deal with nausea and pain the rest of the afternoon. Thank goodness for our awesome nanny!

. Wednesday. A good day. H has swimming lessons, which after6 months he still cries in anger through because I don't get in with him. We had an impromptu lunch date with our friends. The "I'm almost 2, crazyness sets in and we leave lunch in a hurry. Mommy and HeRo both are ready for nap. 

. Thursday. I have appointments and errands to do from Tuesday. H is with our nanny/his BFF. No nap for mommy today. Too busy. But too many spoons out. Glad the little buddy was happy to play outside before dinner and inside playing around me until daddy got home. 

. Friday. I'm hanging at the infusion center. When I got here they said they had me down for next Friday. I was not happy. I could tell the scheduler was preoccupied when I called last week. I should have double checked. Thankfully someone else cancelled and they fit me in. I didn't have to wait too long either. So although the plan was amiss all turned out. 

Theme of the week, and many weeks, days: being a mommy and a spoonie means that the best laid plans often get ruffled. We just have to go with the flow as best we can. 

Friday, June 13, 2014


As usual, some of my loyal and loving peeps, have over the last few weeks gently reminded me about this little space and how it's been a year since I updated. My mom then flat out told me it was time to start writing again, that others find it beneficial and that it's always been good for me mentally. 

When mama tells me to do something, which isn't often, I listen. So here I am:) 

And I also happen to be at the good old infusion center and I will be coming here once a month, which gives me scheduled time to post. No other excuses. 

I really do have things to say, no shock there. Parenting with a chronic illness, living in a world where people judge what they can't see and the implications for those with invisible illness, tales from my medical trists, and updates on the hubs and our little HeRo of course. 

Still working through where to start. And currently I can only use one finger to type since my IV lkeeps pinching. So I'll just post a few pics and be on my way. I've missed this space, but the farther I got from it the easier it was to say it didn't matter anymore. But I know that's just not true. My soul needs it and maybe you do too. 

Wednesday, May 29, 2013

Live from the Infusion Center

Here I am, at the infusion center for the third of 3 iron infusions this round. 

I'm pretty much back to my normal, status quo of tolerable pain and issues, thank goodness. The cdiff seems to be gone, woo hoo. 

My Crohns flare seems to be simmering down too. I do have a distended spot on my belly that we need to watch for possible obstruction, so we'll see how that goes. 

So after today, barring any pipe ups from my body, i don't have to see my GI for three months. Yippee. 

I narrowly avoided the hospital on this last little adventure and I will do all I can to keep it that way. 

As for other news, all is well on the home front. Our little HeRo is 9 months old, crazy! Inch worming around like crazy and making us laugh all the time. 

We are getting ready for a busy summer, so I need to remember to listen to my body and be smart. It's all such a crazy game I'm still trying to master with this little vessel of mine, but I'm doing the best I can. 

Wednesday, May 15, 2013

Mothers Day 2013

"I did not give you the gift of life, life gave me the gift of you."

Words really can't express how blessed, loved and thankful I felt celebrating Mothers Day for the first time as a mother to the boy who was meant to be our son. I love him and can't believe I get to spend my days with him. 

I think a combination of having fought so hard to have my dream of motherhood come true and the beautiful, yet emotional journey of adoption, make me especially thankful for Mother's Day, not as a reason to celebrate me but to celebrate dreams coming true and reflecting on the journey to get to our HeRo. 

And as I do everyday, I felt so loved. The hubs made my day so special. All I wanted to do was spend a low key day with my boys, after all HeRo is the reason I can celebrate this day in a different way now. And although our day was quiet, the hubs found so many ways to make it beautiful. He made, with special touches by our HeRo, the painting above and I was so overwhelmed with the thoughtfulness (and the neatness of his handwriting:)!) i will cherish it forever! I love that man so very much and am so thankful our son gets him as a daddy, he will learn how to be a great man from him. 

I was also showered with love by so many people who remembered it was my first Mother's Day. The goodness of people amazes me and reminds me to be better everyday. 

We also celebrated Mother's Day with HeRo's birth family this weekend. They are amazing people and his birth mother deserves to be recognized. Because without her selfless sacrifice for her son, I would not be his mommy. I will never take that for granted. 

"I will never forget that I became a mother through the heartbreak of another."

Open adoption can be hard, but I believe for us, it's the best we can do for our son. And after our dinner, it just felt right and peaceful that we had celebrated two mothers joined together by one very sweet and special boy on this second weekend in May. 

It was the best Mothers Day weekend I could have hoped for. It was more than I dreamed it could be as I wrote my Mother's Day posts in years past. 

I'm so lucky. I really am. 

Wednesday, May 1, 2013

Time to Dust This Thing Off

Well holy cow, it's been exactly six months since I've updated this little ol' space of mine. I've missed it, I really have and I am continually humbled and thankful for the people who gently remind me that they'd love to see some updates here. It makes me feel so loved that people still check in here after all this time. So thank to whoever is out there.

The last six months have been a whirlwind. Our little HeRo, is now 8 months old and seriously getting cuter by the day. His personality and cuddles and just overall being, make our days go round.

He's on the verge of crawling and our lives are about to change again, with a mobile infant. Oh boy:) I will say that we have been very blessed with a mild mannered little one and that combined with the pretty great schedule we've got going make things go pretty smoothly.

Now if only I could say that my body was cooperating with me. But alas it's not. I'm actually typing this from the good old Infusion Center as I wait for my iron infusion. I've been on a bit of a downward the last three weeks or so and went in last week to see my GI. Turns out, Crohn's is flaring, Ferratin levels are extremely low (hence the iron infusion), and we found out just yesterday that I have the dreaded C-diff infection again. Not fun, not good on the pshyce, but as ever just taking one day at a time. Doing the best I can and snuggling my boys, because they are what keep me going.

There is so much more to say, so many thoughts swirling in my head that have been there for months now. How do I keep up here on my blog that is such a place of therapy for me, when really on most nights after our HeRo is in bed, I just want to have dinner and hang with the hubs.

How do I work through my guilt of being a "sick" mamma to the sweetest boy on the planet?

How do I convey how truly happy I am, and still talk about my disfunctional body and not make my life sound bad or that I'm ungrateful?

Because here's the thing, even though living in this body is hard on a good day and downright ridiculous in times like I'm having now, I have a wonderful, blessed and happy life. The hubs and I thank our lucky stars everyday for our HeRo. And HeRo or not, my body would be doing what it's doing. And let me tell you, he makes the best distraction when I'm down and hurting and all those years of not having him, make me certain we were all meant to be together.

I won't overpromise on posts, but I will say that getting back in the swing of things. Clearing of the dust and writing is a big goal of mine. It's good for me and if it helps just one other person well then that's a cherry on the top. So we'll see how it goes. I have two more infusions this month, so that gives me good writing time.

Consider the blog Spring Cleaned!

And now what you really want, pics of the cutest boy in the world;)