Are we already 20 weeks along? It seems hard to imagine that in a few more months we will have another baby in this house. I still have a baby in this house, and another on the way just amazes me sometimes... We are blessed aren't we?
Today Josie is over her funny bug she had over the weekend, Marie is feeling good and peacefully napping, it is cold outside but sunny anyway, I am 20 weeks pregnant, Luke is hauling wheat, and I am 29... Today I'm thankful my birthday is peaceful.
So, I've been emotional this week. I think that's okay... Luckily it's only part of my day, the time that I vent here. The rest of the time life is happening all around me. In no particular order, this is what's been happening here this week!
Do you ever find yourself in a place where you are forced to think? Forced to accept reality, your circumstances, unable to avoid the difficult things that come to mind? Basically forced to your knees because there's really no answers and if nothing else, prayer brings you closer to peace?
I find myself there often, but it's always unexpected. My dear friend Alicia talked about being the voice for her child, because he cannot speak. I do the same thing, I speak for Marie and I share about our life, though it's not always something I would choose to do, or am completely comfortable doing. I am pushed to do this, because if God's will is that Marie's life is frighteningly brief at least there will be a record that it was, and her story might touch someone, and I'll have done what I feel God wants me to do. Share her story.
Some parts of her story have nothing to do with her. They have a lot to do with how her life has affected our family. We are touched by a humbling beauty. I cannot put into words what a blessing my daughter is, and just how amazed I am that I was trusted with her. She is a complete miracle, defying texpectations placed upon her by the medical community. She is proof that prayer works, that God IS, and all you have to do is be still and you'll see Him in the flash of a smile, a tiny giggle, and a hand that reaches out struggling to grasp and for a brief second connects.
That said, sometimes I just struggle with the reality of it all. I hold a baby that may grow wings and fly to a place I cannot go just yet. I have an older daughter and I worry all the time about how anxiety will affect her. Will she look back and see a happy childhood, or one consumed by a little sister who required more time, or just see a past filled with worry and tears. I hope she sees the happy one, Luke and I work really hard for that. The thing is, it's hard to know if you are succeeding.
Other times, I struggle with the requirements placed upon me. Marie is fragile; she is so strong, but so incredibly fragile at the same time. We have to be careful with her so that she's not exposed to sickness, especially now as we were reminded recently of how hard she must struggle when she is sick. That means that we stay home when it's cold and windy. We stay home when there are places to go that will have a lot of kids that may be sick. I have to accept help and that is not my strong point. I honestly believe that's one of the ways that God is pushing me. He is forcing me out of myself, to be humbled and to accept offers of assistance when I want to stand and shout "I can do it all by myself". The thing is, to be the caregiver I need to be I cannot do it all by myself.
I struggle with making the call to ask for someone to run Josie to gymnastics, to admit that I just can't get dinner made tonight, to look around and see so many unfinished chores and just let it all go. I am forced almost daily to admit that I am not in control. God is and He's kind about reminding me, but I struggle with that. I want to control the way things go in my own home. That's not to be.
To everyone who has helped us I'm grateful. For the meals, and those who help me keep life as normal as possible for Josie, for those friends I am so grateful. To be Marie's voice I am grateful. There are times though when it is so hard then she smiles and I forget all of that. Josie comes home from preschool and chatters about her day and I'm oblivious to all the things that upset me and I thought were such a big deal. Luke and I stop and look back at our lives and where we are now and are floored, this is not where I would have put myself, but we are grateful for how close we have become and how we have each other. For Marie I have no idea what her perception is. I know she is happy, she smiles all the time. I think she sees angels because you can watch her, watching them. I think that Josie has an understanding of this that surpasses mine. God knew she would be Marie's big sister. He knew what all of her days were, before even one of them came to be.
This may perhaps not even make sense but at least I put the pen to paper so to speak. I can't say I'm depressed, just dealing with reality. It is worth it, trust me on that. Just to have the time spent with Marie... Still, I want to watch Josie do gymnastics but I can't be in two places at once. Praying spring comes soon, that we can go out and about again. That Josie won't miss out on things and I can be part of them with her... Praying for the ability to accept how things are, and the ability to thrive despite our trials... Praying...
Surprise! Number 3 was far too wiggly and quick to find out if it's a boy or a girl. Most importantly though it appears to be developing just fine for an 18 week gestation baby and was spotted with it's hand already in it's mouth. So, we'll be waiting until August to find out it we'll be blessed with a boy or a girl.
I'm not making any guesses, every time I have I've been wrong and I just knew Marie was going to be a boy. We're just praying for healthy!
Above you can see all the info about Landon's Hope, a walk my friend Tami has put together in memory of her son Landon who also suffered from Leigh's Disease as Marie does. Landon went to be with Jesus last July. Tami has become a wonderful friend and we consider her and her daughter Paige (Josie's twin) to be family. I am so excited about this walk, this opportunity, all of it, and I've put together a team to honor Marie.
The name of the team is Our Miracle Marie and I'm encouraging you to join the team and walk in honor of Marie and the miracle that she is. We have a goal of raising $500 for the UMDF and I hope that you'll consider helping us to reach it.
I am not sure if all team members will get shirts, or how that will work really, but I encourage you to wear purple for Marie if you join our team and make it to Windsor that day. Maybe we could get a group of us from eastern Colorado together to carpool to the walk and spend the day together? How much fun would that be?!
I'm praying that Marie's health will permit us to be there that day, and we get to remember Landon's life and share in such a special occasion. It's going to be a wonderful birthday party (Landon would have turned 2 on May 30) and I just can't wait.
Please consider joining our team, Our Miracle Marie, and walking in memory of Landon!
(Blogger friends, please feel free to share this! Even if you're several miles away we can still work together and raise some money for UMDF and even if you don't make it to the walk that day we can all still wear purple in honor of Marie and in memory of Landon *I'm sure he would love that, you know how little boys love girly things like the color purple, wink, wink*!)
We came home about 11 am this morning. Marie's doing okay, very tired as are Mom, Dad and Jo. She's pretty agitated still from the steroid (we'll do that for 4 more days) and I think the nebulizer treatments make her jumpy so she's requiring a lot of care. The plan is to lay low, rest up, and go back to the doctor for a recheck on Monday.
I probably won't blog much until then, know we're well just resting and spending time together. Marie has some pretty extreme attachment issues (she clings in a crazy way) and our few days in the hospital has amplified them. She's going to need a lot of reassuring from Luke and I, and to learn that it will be okay if we put her down. So, we'll be snuggling our baby, not that we mind.
Thanks for the prayers!
It looks like we'll stay one more night in the hosp. She's coughing which is part of getting better, but she's not strong enough to cough as much as she needs to. We think it's best to stay until things don't seem so scary. She needed oxygen during her last fit so we want to be sure that she'd be okay when we actually do come home.
Will update tomorrow. Please pray that this struggling to cough doesn't set her back any.
Shan
Once again I've just run home to shower and then I'm headed back. Josie is going to spend the day with my wonderful friend Christy and her kids and then go to pre-k in the afternoon.
Right now Marie is doing pretty well, the steroid shots are working and if she stays the way she is now we should be able to go home after her IV antibiotics late this afternoon. She's pretty worn out and cranky, but that's to be expected. Her lungs are sounding better and the nebulizer treatments are helping a lot.
We'll keep you all posted, thanks for the continued prayers (they are being heard!!!)!
I've just run home form the hospital with Josie to get a shower and change clothes while she catches up on cartoons. Last night they started Marie on steroid injections to clear up the inflammation in her lungs in addition to the IV antibiotics. So far, it seems to be working. She wanted dinner last night and was talking some after being pretty unresponsive all day. Last night she slept okay (as good as you can in a hospital) and this morning was sneaking sips from my coffee.
The doc is probably with Luke talking about her right now, so I'm going to hurry and shower and get back (so nice that we're only 5 min from the hosp!). Thank you for all the prayers and kinds words, and too all of you who have called and those of you who offered for help with Jo. We can't say enough how much we appreciate all of that.
Marie's improving and doing well right now, and we're just hoping this trend continues!
This morning we took Marie in to the doctor to have her looked at, because she has been having a little trouble breathing and has also been running a low fever that we can not seem to break. The Doctor listened to her lungs and determined that she sounded a little rattly and as a result he treated her with a nebulizer which did not help much. During his exam he also discovered that she has an ear infection in her left ear. He then ordered a chest X-ray and some blood work to determine whether or not she may have pneumonia. The X-ray came back slightly positive for pneumonia and as a result she is now admitted here at the hospital to receive an Ive and other treatments over night. Please pray for her. Thank you, Lucas
Yet another Monday and I'm just not up for the "Not Me" thing. Josie is all better, the cold seems to have passed and she's well on the mend. Still a bit of a cough, but that's about it so I'll take it!
Poor Miss Marie has not been so lucky. She's been fighting the cough, which sounds much more horrible than it is (our nurse checked this morning and her lungs are clear). The real problem with this bug is the fever. Sunday morning Marie woke with a fever of 101, which doesn't sound bad. The problem is, her body has just enough to get by, she has no reserves to really fight to lower her temp. When she has a fever she just sort of looses control of other things. Her body becomes really stressed and the Dystonia (movement disorder) becomes much worse. Sunday morning we couldn't break the fever and she was stiff, with labored breathing, and sweating for nearly 2 hours. Finally a dose of her Diazepam broke the episodes but she was so worn out from it.
Today it's only a low grade fever around 99 but she's still really not feeling well. I sat with her about 1 for her to go to sleep and she had a handful of "episodes" in her sleep. At 2pm she was awake again and Luke's sitting with her now. She just can't fall into a deep sleep and then the episodes wake her up. Luckily Luke is home today, it's cold and nasty here so there's not much to do at the farm.
As I said, Marie's lungs are clear so this will just be a matter of managing her fever and the Dystonia until she can kick the bug. Poor kid. Still, when she's up she's smiling and was even giggling some this morning.
Thanks for all the well wishes and prayers. This is definitely the roughest cold we've had yet. Poor little Mama! Also, thanks again to Ilene who showed up at my door this morning and surprised me with meat loafs made up, homemade jelly and a cake! I can't tell you how sweet it was of you, and how nice it is not to worry about dinner tonight! The Lord has blessed us with wonderful support!
Much love-
Sadly, both girls are officially germ monsters. Josie ran a fever all yesterday and last night. She's still got one today and the cough with this bug is just miserable. I brought her in to the clinic this morning to make sure her ear infections had cleared up, and got a strep test just to be careful. Luckily the ear infections are gone and she does not have strep. Just a nasty, nasty cold. The most "deb-a-stating" part is that we had to cancel a play date with her "most special friend" C. (All words in quotations are from the mouth of Josie.) So, lots of laying low and taking it easy until this cold passes.
The bummer of it is that my Little Mama is sick too. As I said, the cough is miserable and she has fits of it that last 20 minuets at a stretch. She gets so worn out she just sort of chokes until it's over. Hospice is coming this afternoon to check her lungs and other stats. She's running a low grade fever and just feels puny. At lunch she didn't even fight eating strawberry yogurt, she just made a face and swallowed it down. Poor baby. I really don't like the cough, and there are times it sounds downright barky so I'm trying not to get nervous. Those of you that know me know that I tend to be a bit of a worrier.
So, hiss/boo Josie's sick. Grrr, Marie's got it again and it's a nasty cold. Bummer, no aquarium for Little Mama's birthday this weekend. We'll have to hold off until they're feeling better and it's a drag because I was so excited to show her the fish and all the other things she's never seen before.
Please pray this passes fast, Marie's lungs stay clear, and the coughing fits stop. It's so hard holding her when she's fighting to cough. Despite how awesome she is, and how well she's been doing it's a reminder that she's fragile and her body is just not strong. She tires so quickly. It's hard to rock her and watch her struggle to cough and work to breath between the chokes.
Ugh, I am so ready for cold and flu season to be over. I want some warm weather, flip flops and the sun on my legs. Soon enough I suppose. Until then, I have a couple girls that just want to snuggle. I'll try to update again after hospice comes for those of you who freak out about Marie's lungs as much as I do!
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Marie's lungs sound pretty good, although the nurse was not thrilled with the barky nature of her cough. If it gets any worse I'll have to have the doc see her. Luckily one of my favorites is on call this weekend. Right now we're just trying Triaminic Cold & Cough, Motrin for the eye tooth coming in and chocolate for the cough:)
In other news, Jo feels a little better. Earlier I was telling her she should help me hook up our DVR (the other one had issues and they sent a new one). She looked at me straight faced and told me "Mommy you can't do that, you are a baker, not a fixer". That did wonders for my self esteem!
Happy Birthday to our amazing, sweet, naughty, full of life and joy girl! We are so blessed to have you in our lives and cherish every moment spent with you!
Shots of the birthday girl this morning all smiles and spunk!
