Iced In (Theoretically)

IMG_1572

IMG_1597

 

 

 

 

 

 

 

All the kids’ therapy was cancelled today due to an ice storm hitting Missouri… although we haven’t seen any ice as of yet.  I know they were hit by the storm down south, but we woke up to sunny skies and the most threatening thing that’s happened are a bit of gloomy clouds.  I’m totally ok with it, however.  I’ve been so productive today!  Having a day off from therapy has been just what I needed to get my energy back apparently, and Jacob’s PT said she could add a couple days on to the end of the program, so we aren’t actually losing any of our really important therapies!

I feel like we have “started school again” about a million times this school year, but we are off of our Christmas break officially and starting slow with Bible memory work, reading and math.  The kids are responding really well to the added structure.  I’ve also got a load of laundry done today, did some paperwork and we have been doing our therapy homework with Jacob.  He took another step for me today!!! I was so excited.  Hopefully I can get one on video one of these days!

Hope has homework to do also, but she went back home with Daddy this weekend so I’m not in charge of that.  He went home early for fear of being iced in so far away from church.  So we miss him a lot, but hopefully without all of our distracting selves he is getting a lot done. :)

I am still feeling really positive about therapy.  I’m mostly excited about what we are doing with Jacob in physical therapy and I’m mostly excited about what Hope is doing in speech and occupational therapy.  Her therapists yesterday suggested some interesting approaches to therapy with her, and we are going to try those out next week (stay tuned!!).

For Jacob, they ordered quad canes (with four points) for him to try and also single canes to try.  His tripod canes are just so big and bulky at the bottom that it’s hard to walk without him running into the base.  And an added bonus is, if we move to a smaller base it will be another step in the direction of independent walking – which is what we are shooting for!  We get to use them in therapy for a few days and decide if we want them before we buy them, which is super helpful.

And now I have a really grumpy baby… toddler… I know, I know.  But I’ll still call her the baby anyway, and she’s grumpy, so I’m going to sign off for the day.  Stay warm and safe everyone!

 

A Restful End

Wow has it been a whirlwind of a week.  We drove up here early Tuesday morning for the first therapy evaluations, checked into the Ronald McDonald House, went back for more therapy evaluations, somehow fed the children in between, went back to the RMH for dinner and loaded Daddy, Jacob and Hope up in the van to spend the night with some local friends (since we only had room for four of us in our room) and had a bit of a fitful and restless night.

Woke up Wednesday morning, still trying to get our schedule down.  Quick breakfast, therapy was bright and early, we were behind all day long for some reason and that day wasn’t any easier or slower than the last.  Jake had to drive back home for work during the day, lots of craziness and optimism about how therapy would go.  Got to check into a bigger room so we could all stay together, moved everything out and over.  More business, a little better sleep.

The day before last we had another very full round of therapy sessions, lots of coming and going and trying not to be late.  Did I mention it was SO COLD this week?! Of all the weeks to have below freezing temperatures the Good and Gracious Lord decided that this was the best week to do that.  I love Him, but I just don’t understand Him sometimes… Getting five children and two wheelchairs in and out of a van multiple times a day when it is so cold is… a growing experience, let’s just call it that.  It’s an exercise in being thankful and learning to appreciate the good things.  Right?  Right.

Then Jake had to leave that night to go back home again, and we had a break from therapy yesterday morning, a bit of a breather, or so I thought.  Stephen woke up very sick and with some concerning symptoms.  My bestest friend in the world who is coming to stay with us and help out this month (YAY I AM SO EXCTIED!!!!) had her flight delayed by about seven hours and I was just telling myself that God was in control.  Somehow all crises were averted and all therapies took place and Jacob took his first ever independent step and we seven, tired and sick and stressed, piled back into the freezing van to come back to our “home away from home”.

And then a quick dinner and good-byes to Daddy again as he left to do the Epiphany service (a blessed Epiphany by the way!!) and then Candy Land and bedtime stories and cuddles and sleep.  And another long evening of being alone.  It felt like I should have been sitting at home with some sort of delicious celebratory dinner and giddily (is that a word?) talking with my hubby about how our son is going to walk and how proud I am of him and what amazing things this will open up for his life.

Concordia Seminary 2009

Concordia Seminary 2009

But the anticlimactic ending it is.  Restful, quiet, peaceful, but nothing exciting or fitting (it seems) for the miracles that are unfolding in front of our very eyes.  We have heard more than once, from more than one person, that if Jacob ever walked independently it would be a miracle.  And I agree.  Yet, I will have to probably wait until the end of the month to actually go home and soak in all the goodness that’s happening, to have that celebration with our family and the love of my life.

As for today, I woke up the usual way, by my adorable little alarm clocks that God gave me.  It’s still dark, the world isn’t as awake as my children are.  I’ll get them all dressed and fed and we will head out the door to go meet Daddy at home.  It’s the weekend, no therapy tomorrow, as Jacob says it’s a “rest day”.  I will get Evangeline and myself ready to go and say good-bye to a dear friend of ours.  A sweet lady who sat behind us in church for the last three years and was always ready to greet us with a smile.

We went and visited her in the hospital on Christmas, and she told me so many things I hadn’t known before.  We showed her how Jacob could stand up all by himself now, and she was so happy.  She said that she had been praying for him to walk since the day we brought him home.  She said such kind and lovely things about our family and blessed me more with her words than she could have possibly known.

Such a lovely woman of God, and it seems so anticlimactic to end the earthly life of such a sweet soul with a funeral and a burial… There is nothing exciting or breathtaking happening today, just a quiet, fleeting good-bye.  Yet, even now we see, dimly and through a dark glass, but we see.  This isn’t really the end, not yet.  The celebration is yet to come.  The Resurrection is nearer now than it has ever been, and that will be anything but anticlimactic.  Her life is not over, it is safe and hidden with Christ, and though we are not celebrating today, we will be soon.

Today we give thanks for a restful end, and we await the glorious culmination of the promises to come.  One day soon we will have that greatest of all celebratory meals, with all our family, and with our One True Love.  We will be home, and all will be as it should once again.  For now, we rest and we wait.  We wait even more anxiously than before for the coming of Christ.

May your weekend be restful and quiet and filled with the love and mercy of our Lord.

Therapy Therapy Therapy

Today I promised you I would talk more about the therapy program we are doing.  It’s pretty cool actually.  I have known about it for a long time, but we were just now able to get accepted into the program; we wanted to have Jacob and Hope do it at the same time (for which, the reason should become quite obvious as you read on), which meant they needed two open spots, which is even harder to get.

Fortunately for us they had just hired a new physical therapist and she had a totally open schedule, so they booked us right in!  The therapy program they have here is amazing.  They have great equipment and very experienced pediatric therapists who are used to the complexity of Jacob and Hope’s needs.  But because it’s a bit of a drive from us, it’s not been at all reasonable for us to do our weekly therapy here.  At the same time, the therapy close to us is not adequate in any way for the kinds of things our kiddos need.

The intensive program has been a godsend for us.  Jacob gets 2-3 hours of physical therapy every day and Hope gets one hour a day (she can’t tolerate quite as much).  Not only does this allow us to fit a lot of therapy into a shorter time frame but it also helps build new habits, because we are working on them daily.  Whereas before, in order for Jacob to progress I had to be working with him at home constantly.  That was not a good situation for our relationship or for the family in general.

In addition to physical therapy they are both also receiving speech therapy and occupational therapy while we are here.  So that totals to 2-3 hours of therapy for Hope each day and 3-5 hours of therapy for Jacob each day.  It has been so amazing.  This is only our third day and already Jacob has almost taken his first independent step, he jumped for the first time ever, he learned how to do buttons and we are tweaking all of his equipment and supports so he’s walking much better too.

Hope was tall kneeling earlier today, which was SO cool!  She also used an communication device to ask for more bubbles (she presses a button, the ipad says “more”).  She used it at least twice on purpose!  They are so happy with how visually attentive she is and are optimistic about her ability to learn to communicate her needs.  We really couldn’t be more thrilled with that.

While we are doing this marathon of a program we are staying at the Ronald McDonald House (which is just so amazing).  I had no idea how much their organization does for families!  We are being so well taken care of here, and I would definitely recommend to everyone to go donate or volunteer at their local Ronald McDonald House Charity.  They found us a room that actually accommodates our whole family.

My dear husband is staying with us, because it’s just impossible for me to juggle all five kids and the therapy schedule without him here.  He goes home some nights and days because there’s obviously work he can’t do here, but when he is here he stays up late getting his “office stuff” done and he wakes up around 4am to work some more.  I have no idea how he does it.  He is my hero for sure.  And I miss him because he went home last night for more work and he won’t be back until this afternoon.  Not that I can possibly complain with everything there is to be thankful for!

Volunteers come in and cook one hot meal every evening and sometimes brunches too on the weekends.  They also stock their pantry with cereal, oatmeal, bread, peanut butter, popcorn, snacks, drinks, etc.  And they have a fridge and freezer full of leftovers, so we can eat all three meals a day here.  They also have a full kitchen we are welcome to use and cook in whenever we need to, and our own little pantry and a fridge we can use.

They have two family rooms with TV’s, toys and games and they have a library room too!  They have a little playground outside, and a play area in the dining room as well.  The hospital has a shuttle we can use to get from therapy to the house and back when I don’t have a vehicle, which has saved us a couple of times, although it only fits one wheelchair so we do have to work around that.  The staff have all been so wonderful and I have no idea how we would be able to manage this month without the help of the RMH.  We are just so blessed to be here and so thankful that God has provided everything that we need.

The therapists have mentioned that, especially for Jacob, it seems like we came at exactly the right time in his development, just as he’s learning to stand independently.  And for Hope, she has just hit her emotional stride to be able to handle an intense therapy program like this.  The timing couldn’t be better for either of them, and our Lord had it all planned out so much more perfectly than I could have.

I won’t bore you with more updates today (my husband seems to think that my posts are too long, but I tell him that about his sermons so I guess we’re even… just kidding, love you sweetie!!) BUT I do have some pictures!!  Enjoy!  And if I can I will write a little more tomorrow. :)

 

Ball Pit

Kyrie joining Jacob in the ball pit during occupational therapy.

 

The kids checking out one of the family rooms at the RMH. Can you find all five? :P

The kids checking out one of the family rooms at the RMH. Can you find all five? :P

 

Jacob at physical therapy in the "cage" learning to jump for the first time!

Jacob at physical therapy in the “cage” learning to jump for the first time!

 

Practicing buttons at Occupational Therapy. It only took him a minute to do all three!

Practicing buttons at occupational therapy. It only took him a minute to do all three!

 

Hope tall kneeling at a table for physical therapy!! I can not believe how far she has come. <3

Hope tall kneeling at a table for physical therapy!! I can not believe how far she has come. <3

Love to all!!

EDIT:  I have no idea why all my pictures are turned the wrong way.  I fix them on my dashboard and they are correct in my editing box but then when I publish they’re all backwards again.  So… if anyone knows what my problem is let me know cause I have no clue. Haha

2nd EDIT:  FIXED!! Now they’re all backwards in my editing box and the right way on the post.  I feel like I’m going crazy, lol!

Peace and Joy

It’s been a long time.

If I do have any readers left, it’s probably only those of you who have subscribed and get a random email of my return.  It’s hard to come back after such a long time and post here, but my husband encouraged me to write, thinking there would be people who’d love to hear from us, so here I am.

As most of you know by now, I quit Facebook a while back, I don’t miss it at all, but when I reactivated my account to look for an old video the other week and saw all the things so many of my friends and acquaintances are going through, my heart just sank.  I’ve really been quite secluded from the rest of the world (living under a rock I think is what they call it).  And although I am able to be more present and focused for my little family, it is not without its sacrifices, and I do miss my friends and the adoption community.

So much has happened over the last year, and yet I don’t feel like much progress has been made until just recently.  It’s difficult to write when you have no good news to share, and although there has been ups and downs, the downs seem to swamp the ups and I am often left feeling like we are going ever backward and never forward.  I want to share our journey because I do think we have been incredibly blessed and I want to share our children with the world because they have changed people’s lives and that’s an amazing gift!

On the other hand, I promised that I would not sugar coat things and I’d be honest here.  And sometimes when hard becomes unbearable, there are just seasons that I would rather not share with the rest of the world.  Perhaps that’s selfish of me.  But there are many moments I’m not sure how to survive without being a little selfish.  So I do hope that the world and my dear readers and my cherished friends and loved ones will all forgive my lack of contact.  Whether it’s here or on social media or by email or phone, I have not really kept up my end of the relationship and for that I am sorry.  Especially since you all have been so faithful and kind to our family through everything.

And with that said, I’ll move on to what most of you really want to know.  How are we doing??

We are doing alright.  The proverbial light at the end of the tunnel seems to peek through much more often these days than it ever used to, and for that I am thankful.  I am still very much dealing with my Hashimoto’s diagnosis.  We don’t have it under control, and sometimes it seems that we get things stabilized and then we go downhill again.  Being crunchy I have done my due diligence with autoimmune protocols and elimination diets, but I cannot seem to get to that place where I am actually healthy.

The last two months have been very difficult.  I have gained quite a lot of weight, none of my clothes really fit anymore.  I’m dealing with intense episodes of depression and I’m having migraines that are far too frequent for it to be ok.  And those are just the tip of the ice burg when it comes to symptoms.  At this point I’m ok with not feeling well, I’m ok with being chronically ill.  I just want to be well enough to take care of my family, and after that I’m at peace with whatever comes.  Not yet at peace with my weight, but maybe in time I’ll learn to be more gentle with myself.

I would like to say that the kids are all doing marvelously, the end.  But we all know better than that.  The children are all doing very well, but there are some difficulties there too.  Hope finally seems to have settled after her last episode of medical trauma last year.  She had casts taken off her legs after surgery and it must have triggered some sort of flashback from years past, she literally sat up from the bed (which she had never done) and began punching the poor tech (also she had never done).  For weeks afterward she was a complete emotional wreck.  I couldn’t touch her for three days without her sobbing.  She would start having flash backs again and was totally terrified of any touch or movement.  It was totally heart wrenching.

But last month when we went in to clinic (a long day of specialists) she didn’t cry once!  We were all shocked that through all the prodding and moving and activity that she was remaining so calm.  Doctor’s offices had always been a trigger for her.  At first I thought it was a fluke, but it has held up and she is doing therapy once or twice a day with no tears!  I feel like she is finally starting to blossom.  We have the surgeries (hopefully) all behind us, and she is finally just had time to settle in without any new trauma.  I see so much potential in her and so much life coming back to her sweet self.  I’m absolutely thrilled for her and can’t wait to see how she continues to grow.

(Speaking of therapy, we are currently living at the Ronald McDonald House near the Children’s Hosptial.  Jacob and Hope are in an intensive therapy program, daily therapy for a month!  It’s an amazing program and we are super excited for it.  I’ll write more about that tomorrow if I can.)

Jacob has also made some great strides.  Some things (like academics) seem to be at a total standstill for him. But he is having some breakthroughs.  He just got a new orthotist who fitted him for braces, and she did such an amazing job that he can now stand independently!!  His record so far is nine and a half minutes without falling.  I cried in her office when he stood up for the first time without help; I had been making peace with the idea of it never happening and now we are working on taking independent steps and working toward walking without canes!  He has a long way to go, but we are finally in a good place to start working on some of his goals and figuring out how to best support him so that he can have the best life possible.

Evangeline is doing wonderfully in school, she taught herself how to read.  We’ve been doing little mini lessons on phonics for years, but not curriculum or anything structured.  And she finally put the puzzle pieces together and is reading on her own!  She also loves ballet and does quite well in it.  Her favorite thing to study is science.  She is fascinated with space, animals, earth science and meteorology and the human body – all of it!  And she is quite the artist too.  I’m excited to see where her gifts take her.

Stephen is still our sports guy.  He does gymnastics and t-ball and loves both.  He does some school too, but not too much at this age.  We do a little bit of math, Bible, memory work and reading.  He wants to be a doctor, baseball player, construction worker and a soldier when he grows up, so I’m not sure if he will end up pursuing all of those or narrow the list a bit. I guess we will see. 😉

We still call Kyrie the baby, but she really isn’t anymore.  The therapist called her a toddler today and it made me just a little sad.  I know she’s a toddler, but she’s still just a baby to me.  She loves all her older siblings and wants to do everything any of them do.  She is even developing their attitude so we are nipping that right away.  My biggest concern for Kyrie is her teeth.  They are quite bad and we haven’t seen a dentist who will really give us a direct answer to it yet.  Considering I was seriously hypothyroid with her pregnancy and didn’t know it, it’s not surprising that her teeth did not form correctly, but it is a frustrating problem and I wish I could just make it better.

There are lots of things to come to peace with.  And there are also many things to take joy in.

Peace and joy, those are my prayers for this year.

Happy First Day of Summer!

Hope StandingSummer is here without a doubt, and our house is not appreciating it.  Our AC quit on us yesterday so it’s up to a whopping 82 degrees in the house.  This is good news for you because it means I’m chilling with the kids in Jake’s office while he cleans and I get to write a blog, yay!  (Yes, that all must sound very strange, so I’ll explain.  Monday is his day off and it was cleaning day today and I was doing the cleaning like any good wife probably should, but then the baby needed help getting to sleep so I am getting a break while Jake does a few things.  Isn’t he awesome?  Yes he is.)

Anyway, so I owe you a bit of a catch up post.  This last couple of weeks has been rather tough for us.  Hope got her casts off at the beginning of the month, which I was looking forward to.  I thought she’d be happier without them, oh boy was I wrong.  The super loud little saw thing they use to get the casts off was traumatizing for her in every real sense of that word.  I was in Jacob’s post-op appointment and Jake was with Hope so I didn’t see any of it, but when I saw her afterward she was a terrible mess.  Her eyes were red from crying (rarely does she cry that much) and all the color was drained from her face.  She proceeded to cry the next 45 minutes until we could get back in the van to go home.

Jake told me how terrified she had been during the appointment; when the tech was trying to get her casts off she literally sat up on the bed and starting punching him.  This is not typical behavio,r as any of you who have followed along will probably realize.  Yes, she hits herself, but she is never violent toward other people.  He told me that he had never seen her that upset, even when she was in excruciating pain when her shunt failed last year.  Wow, has it only been a year since then? It seems like way longer.  Longest year of my life… so glad it’s over… anyway I digress.

When we got her home she did not improve.  Any time we would touch her, especially her legs or feet, she would jump and start screaming and crying.  Even if I accidentally brushed her toe while I was walking by it would cause a terrible fear reaction, any kind of touch at all was scary for her.  For the first couple of days I touched and moved her as little as possible.  We just tried to use very quiet, gentle voices and reassure her but it was like she wasn’t even hearing us.  She was not present.

Diaper changes, and putting her knee immobilizers and braces on were the worst times, and still are.  Whenever I would have to do any of those things it was like she wasn’t even in the room with me anymore, she was somewhere else reliving some horrible trauma, and I was the one triggering it.  The only way I could touch her without her screaming was to pick her up and wait a minute for her to calm down.  One time I did that, and when she came back to reality and stopped crying she just got very quiet and wrapped her arms as tightly around me as she could and grabbed my hair.  It was like she was holding on for dear life.  She’s never done that before, and while I’m glad she’s looking to me for safety, it was heart wrenching to see her like that.

It’s slowly getting better.  She has always had anxiety over people going near her legs and feet, so we are sure the casts must have caused her to have a flashback from some trauma long ago.  She also had other strange symptoms, fever, diarrhea,  seizure-like episodes, lack of appetite, etc.  We ended up having to take her to the ER (where I insisted she get some good drugs so as not to traumatize her more).  Nothing showed up in the tests and the meds they gave her worked great, she was very chill the whole time and didn’t remember it the next day.

She’s slowly improving.  My Hashimoto’s flared up very badly that week and the week after.  Stress is not good for autoimmune conditions, and I was quite devestated by the whole experience myself.  Now we are two weeks out exactly and things have settled down again.  I haven’t been blogging due to that and the fact that I no longer have a computer at the house.  We are rearranging our whole house from top to bottom and the desktop has not been set up the last two weeks so I really don’t have a great way to blog.  Planning on remedying that very soon.

In other news, we are starting school for the kids next week and everyone is very excited about that.  I figure we should probably start over the summer so that when life inevitably happens during the year we have some wiggle room and can still finish up all of our weeks by the end of the year.  And as for Facebook is concerned, I don’t miss it one little bit.  I really thought I would, but I haven’t.  I am so much happier without the drama of it all and the ridiculous amount of time and energy it took from my family.  I feel way more productive now and I’m overall more content and happier with life.  I’m more present with the kids.  It’s an awesome feeling.

And that is all for me!  But I do want to say, if you are interested in checking out another Lutheran pastor’s wife who is also adopting I suggest heading over to Hannah’s Blog.  They are adopting two kiddos and they are in-country right now!  Very exciting!!  Blessings on your week ya’ll!

My First Day Without Facebook

Five minutes without Facebook… I do believe my body went through some physiological reactions to deleting my account.  I felt my blood pressure elevate, a small amount of adrenaline, quick breathing.  I am ashamed to admit it really, but it was a little scary letting go of it.  I didn’t know what I was losing, but I felt like there was something.

I tried to look at my already loaded Facebook screen on my phone, it reloaded itself and showed me a screen asking me to log in instead.  It felt like a rejection of some kind, after all Facebook and I go back ten years now, as long as any friend I’ve ever kept.  And what was everyone doing?  I didn’t have people to check in on anymore or to comment on their posts or like what they said, how would they know what I thought?  And… what if someone else wanted to read my posts?  They can’t.  They’re gone now.  How strange.

I commented to Jake, “I think I’m just as lonely as I was before, but Facebook let me pretend I wasn’t.  Now I actually have to face up to that.”  He nodded.  Facing loneliness is a scary thing, escaping into social media world allowed me to immerse myself into hundreds of shallow relationships that never really allowed for truly fulfilling connections.  Perhaps now that it’s gone I can begin to build that with the few of you who are still here.  But I won’t lie.  It’s terrifying to me.

*****

Fifteen minutes… we go upstairs to bed.  I ask Jake if I can scroll through his Facebook newsfeed before I go to sleep.  He says no.  I (reluctantly) go to sleep.  I feel frustrated, but I suppose if that’s the worst I feel that’s a good sign.

*****

It has been about ten hours now and I am not really sure what to do with myself.  Usually I wake up and scroll through my Facebook feed for a few minutes while I work up the courage to face my day.  I do this before I even get out of bed!  But I have no Facebook today, so I said a prayer instead, laid there for a few minutes missing my routine, and got up.

I usually check Facebook again while the kids are eating their breakfast.  I haven’t been eating with them most mornings because of not taking my medication on time, (have to wait an hour before I eat) so I’ll just escape into Facebook while there are a few moments of quiet before the craziness starts again.  There’s none of that today, so here I am blogging instead.  I’m not sure if that constitutes progress or not.

*****

Fourteen hours post-Facebook.  It’s mid-morning and I have sat down a couple of times, picked up my phone to do something and then went to open my Facebook browser before remembering it wasn’t there.  I get a tinge of disappointment, and then get up to do something constructive instead of wasting twenty minutes on internet rabbit trails.  Getting more productive, this is good…

*****

Fifteen hours gone and I sat and nursed Kyrie.  I didn’t have anything else to do but just enjoy her.  It was really nice.  I realize how little eye contact we usually make while she’s nursing because I’m usually looking at a screen instead.  When Evie was a baby I focused on her so much more during our nursing sessions.  I need to do that more often; she is already getting so big.

*****

And at about sixteen hours…. HOPE JUST SAT UP ALL BY HERSELF!!! AHHH!!!  I want SO badly to post it all over the internet and I can’t!!!  I am so so so excited.  I put her toy at the end of her bed and when I turned around she was sitting up to reach it!!  I am stunned.  STUNNED.  This is a huge, amazing, wonderful milestone and Jake isn’t home and I have no one to share this with!! AHHH!!!!!

*****

Three hours later (we are at 19hrs now if you are still counting) I am still really wishing I could have posted Hope’s sitting up on Facebook.  She sat up for me five times and no one has heard about it yet.   It. Is. Killing. Me.  And all of the kids are saying hilarious things that would make for great little quotes on Facebook world.  So many posts to post today!  But there will be no posts.  Sigh… Just this blog post.

I have to trust that the people who really, truly care and want to know will keep up with me and our family.  I have to believe that I’m not cutting anyone off who wasn’t ok with losing that connection.  And I have to believe that even if I did unintentionally do that that this is what is best for our family, and my husband and kids have to come first.  Lots of emotions to wrestle with.

*****

Putting Evangeline to bed at twenty-one hours post Facebook deletion and as I went downstairs she said to me “Tootle-loo for now! And do remember me to all your friends!”  Where is Facebook when I need to post these crazy, wonderful things?!  Ahh!!  I need to start a quotes journal or computer log or something…

*****

Twenty-Four Hours.  Well, I made it.  One whole full day without Facebook.  I don’t really miss it.  I miss the convenience of it, but all my muscles are sore from lots of hard work.  I have been more diligent about everything, chores, prayers, mothering intentionally… it’s been a good day.  I think the thing I miss the very most is seeing what is happening with my friends.  I have this blog, but most of my friends and family don’t blog.  I want to be involved in people’s lives.  I want to keep up with everyone who has loved and supported our family.  I’ll need to pray about that.

Realistically I can’t spread myself so thin by being involved in hundreds of people’s lives, even superficially.   I need to build relationships that truly count.  I pray God gives me the wisdom of how to do that.  But today and tomorrow, and the next day I’m just going to focus on getting my own stuff together and building my family back up again.  I’m needed here most of all.

Hey! I’m awake!

Ever watch signing time?  For those who do, I have that “Hey! I’m awake and I’m ready to start my day!” song stuck in my head.  You’re welcome to join me.  😀

Actually it’s 11pm but I just woke up an hour ago.  I am shifting my sleep cycle in an attempt to both get more and better sleep and be more productive.  I actually read about the concept of “second sleep” in this article a few years ago and just thought the other day, maybe I should try that…   Why?  I’m so glad you asked!  Let me show you.  Usually my nights go like this:

6:30pm – We start the bedtime rituals with the little ones.  I am already exhausted from the day.

7:00pm – We are finishing bedtime routine and praying everyone falls asleep.

7:30pm – Everyone is in bed, hopefully sleeping, I collapse into the recliner.

8:00pm – Jake and I halfheartedly discuss everything we should be doing but are too tired to do.

9:00pm – By now I am way too tired to still be awake, but I know how much I need to be doing so I don’t go to sleep.  I can’t sleep.  My mind won’t let me.

10:00pm – Tired. Stressed. Overwhelmed.  Still in the recliner.

10:30pm – I have now dragged myself up the stairs and into my bed.  I spend ten minutes nursing baby to sleep.

10:40pm – Stephen wakes up and needs to cuddle.

10:50pm – Evangeline wakes up and needs to go potty.

11:00pm – The baby wakes up again because I keep moving.

11:30pm – Almost about to drift off into sweet, restful sleep and Jake comes up to bed.  Kids are awake again.

12:00am – I finally get to sleep.

Do you see how unproductive this is??  Very!  To add to all of that, at about five or six in the morning the children start waking up, so I am awake again, but too tired to get out of bed.  I usually drag myself out of bed at 7:30 these days.  Guess who is making breakfast?  Yeah… not me.  (I have to add here that I do have the best husband in the whole world.)  So I spend about nine hours physically in bed and I’m only get about five hours of total sleep.  And the two hours I am not in bed after the kids are down, I am not accomplishing anything. I’m much too tired mentally, emotionally and physically.  But I can’t sleep because I know it’s my only time of day with no children.

So a few days ago a lightbulb went off.  What if I just throw out my whole playbook and made a sleeping schedule that actually worked?  Who says I have to sleep one long stretch and if I miss that window I’m out of luck?  I decided to make my own rules.  Here’s what I’m trying now instead:

7:00pm – Lay down with the children and GO TO SLEEP.  I can’t remember the last time I wasn’t ready to pass out by seven o’clock.  So might as well!  Those first couple hours are when the kids sleep the soundest.  I should sleep when they sleep.  Parenting 101 right?

10:00pm – This is when the kids usually start getting restless anyway.  So I’ll just wake up here, help all my precious little ones get their nighttime needs met (not begrudgingly because I was going to get up anyway! Brilliant!!) and then go get some work done.

12:00am – I think this is where I will probably crash again and the restless window for the kids is usually done by now.  So I will go back to bed about here.

5:00am – If I get a three hour stretch earlier and then this five hour stretch it should be easy for me to wake up at five, a little ahead of the kids, so I can make breakfast and prepare myself for a great start to the day!

I know, it seems a little too good to be true, right?  I get more sleep and spend less time in bed, all with waking up earlier and getting more time to myself.  Perfect.  We’ll see if it works!  But, if nothing else, you have a blog post tonight courtesy of second sleep!  I’ll see if we can keep it going!

P.S. – For those of you who might be new to my blog, welcome!  (I got quite a few views on my Replacement Mom post that I wrote a year ago.)  I also just wanted to thank all of you who commented.  Your thoughts mean the world to me!  I wish I could respond to each one, but please know I do read them all and they are so encouraging and make me want to keep writing.  Thank you for taking the time to chime in.  <3

What We Didn’t See Coming

This is not the post I was expecting to write to you all today.  Next week was actually supposed to be our back to school week with all the frills and fun that that brings.  I had just finished concocting my weekly chart, and was so excited to get to use it.  I couldn’t wait to blog about it and tell you what our first full-fledged homeschooling year would be all about.

That post will still happen, just not today.  And my lovely school chart will be used, just not next week.  Yesterday life threw us a bit of a curve ball.  They seem to be coming one after another these days, which makes it so hard to tell you how we’re truly doing.  One day we’re great, and the next we’re devastated, and then we find our footing again before finding something new to stumble on.  This entire last year has been this way and it’s quite exhausting.

Usually, though, it’s a health issue with the kids or emotional setbacks or our car breaking down.  This time it feels different, because… it’s me.  Growing up I was always the “healthy one”, I watched my brother and sister go through allergies and asthma and all kinds of hardships.  The worst thing I ever went to the doctor for was a broken finger and strep throat.  I’m used to being healthy, and I’m used to taking care of sick and fragile people around me.

Now it’s my turn to be sick, and it’s not something that will be leaving me.  I have a diagnosis, a fun little medical label that now gets to follow me around for the rest of my life.  The doctor is anxious to get me on medication, supposedly medication I would need to use for the rest of my life.  I have specialists to see and screenings to be done.  I am out of my comfort zone friends.  Specialists are for my children, not for me… right?  Right??

I won’t lie… this is hard.  But hard is not always bad.  The truth is, I haven’t been healthy for a long while; I’ve mostly just been ignoring the warning signs my body was giving me.  The ever-fluctuating hormones of post-partum, along with the stress of the last year, have seemed to trigger my underlying issues and have caused a downward spiral in both symptoms and severity.  It got to the point where we could no longer ignore the issues, and we decided it was time to find out what was wrong.

I am thankful we went in.  I’m thankful we have answers, even if I am not happy about what the answer was, we knew it couldn’t be anything great.  Nevertheless, now that I have a name for my malady, I can start finding some tools to alleviate it.  I extremely grateful that it is treatable.  Sickness and death are a part of the fall, they happen to all of us.

I am not immune from this, and am grateful for the opportunity to remember that life is a gift, each day is precious.  Being reminded of one’s mortality can be a spiritually healing experience.  I rest in the knowledge that God works all things to good for us, and that He is already using this curve ball as a catalyst to healing in our home in more ways than one.

I know that you all are praying, and I am so humbled and comforted by that.  Love to you all.  More to come soon.

Knock Knock…

Anybody home? Yes! I am! And we have lots to catch up on!  First and foremost, I wanted to announce the long overdue winner of our giveaway! Stefanie!  Congratulations!  I’ll be contacting you soon to work on getting your prize all set up!

Second, I am so sorry for not posting sooner.  The worst of the adjustment period seems to be over for us and I’m hoping that the next few months we’ll avoid surprise surgeries and unexpected setbacks and get to finally see what our new normal looks like.  We are also trying to get a more reliable internet connection at the house so I can blog more often.

It takes so long to upload a basic post that it hasn’t really been realistic for me to do much.  But now that we’re finding a groove, I’m ready to get back to it and a reasonable internet connection will allow that to happen!  It will also allow me to start uploading pictures again!  If there’s something that you’ve been dying to know about how our family’s doing please comment or send me a quick message and I’ll put it on the docket for posts.  Hope everyone has had a wonderful summer!  It’s good to be back!

Hope is out of the hospital, she’s doing wonderfully.  We are still working through some issues though.  The catheter that drains fluid from her brain became infected, and the bacteria was present in the spinal fluid of her brain.  Life threatening stuff!  But we have the amazing gift of medicine, and we give great thanksgiving to God for the miracles He accomplished through our doctors.  After spending two weeks in the ICU and going through two more surgeries, she is now healthy and thriving once again.

The unfortunate piece of this, however, is that Hope’s self-harming behaviors were the cause of the infection.  She constantly jabs and picks at her catheter.  It was never an issue before, I think, because it was an old surgery (from when she was a baby) and it was fully healed before her stimulating behaviors started.  But when she received a new shunt and catheter back in April, the tissue didn’t have time to completely heal.  We did keep her away from it for several weeks afterward, but that wasn’t enough time.

Now we are in the difficult position of preventing her from touching her catheter until it is fully healed – her neurosurgeon said six months.  The area we need to protect runs from her neck all the way down to her stomach, it’s a very large space.  There is absolutely no behavioral redirection that prevents her from picking; it is a compulsive stim and she just can’t help it.  This means that when we aren’t able to be one-on-one with her and watching very closely, we have to keep her safe some other way.

We are working so hard to find a solution that doesn’t include pediatric restraints.  It took us a month before any of her doctors or therapists would even have a serious brainstorming discussion with us.  We tried some solutions with our own creativity, but nothing has panned out yet.  Hopefully soon.

In other news… Jacob and Evangeline are starting 1st grade!  We have lots of great books to get us going and I’m super excited for both of them.  Technically Evangeline would be in Kindergarten this year, but since we are homeschooling it gives us a lot of flexibility to go at their pace, so I opted for an early 1st grade start and if we need to take more than a year to finish it no one will be stressed out!  Having them start in the same grade will also be super helpful for me, as I only have one lesson plan.  Yay!

I’m telling Stephen that he gets to “start Preschool” with them, which really just means I’ll have schoolish things for him to do when he feels like it.  Hope is definitely in school with us, but she isn’t really classified in any grade level yet.  I’m hoping that by the time Stephen is ready to start 1st grade her attentiveness will have grown enough that she can listen to the books and music and enjoy them along with him.

The children have reached lots of milestones since I last updated.  Jacob is now using crutches around the house instead of a walker!  He still uses his walker to go to church and back, but he is getting really strong and we are so proud of how hard he’s working on his walking.  He even walked up the stairs for the first time ever a few days ago!  Tomorrow is Jacob and Hope’s first baptism birthday and we will have a dinner and cake to celebrate with them.

Hope is now able to sit up on the edge of her bed and help me put her shirt on.  This is a huge accomplishment!  She does it without prompting and seems to enjoy participating in her care.  She is getting more interested in being a part of our family every day.  It’s amazing to watch her come to life.  I’m working on teaching her to tell me when she wants to be picked up and also showing her how to go from a laying to a sitting position.  She’s strong enough to do it, she just needs to learn that she can!  We started putting her in her stander for a while but we’re breaking from that.  Her braces aren’t exactly correct and she has some alignment issues, so we’re going to try and sort all that out before doing any more standing.

Evangeline has her very first loose tooth, which she is impatient to get out.  She also started her first dance class last week.  She is in a ballet and tap class and is really enjoying it so far!  It has some of the same elements as gymnastics, without the flipping on bars way off the ground, which she didn’t care for much.

Stephen, on the other hand, loves gymnastics!  His first class was also last week, and even though he was shy at first, once he got in on the fun he never stopped smiling once and he zoomed through all the skills.  I was impressed!  He is getting more interested in reading now and would be happy reading several books all in a row if I had the time for it.  He just had his third birthday and is turning into a sweet, sweet kid.

Kyrie is growing like a weed; she is already in 2T clothes and she has four teeth!  Ack!  How did that happen!?  Last week she said her first word “Dada”!  She won’t say it for us every time, I suppose it’s on her terms. We are diaper free now except when we go out in town.  I still take her potty when we’re away, but we use a diaper just in case we can’t find a potty fast enough.  She stays dry through the night for us, which is awesome, and she typically has a few accidents throughout the day, but we’re doing really well for six months and I’m enjoying not having to buy so many diapers!

 

A Bright Day

Hi everyone!  Ok so really quick.  For those of you who follow my Facebook page, I posted a prayer request a few days ago because I was trying to write a post (which I’ve been honestly trying to write for months) and it just wasn’t coming.  The words I needed to say were hard words.  Really hard.  And I didn’t know exactly how to say them.

Well… ya’ll are amazing prayer warriors apparently!!  Because the next morning I woke up and my life was changed.  It sounds sensational and crazy, I know. But I have no other way of describing it.  So, if you want to hear more there’s a video on my Facebook page you can look at here. (Because I still have no idea how to post a video on my blog! Lol!)

I will be posting again soon!  And the next post will have the winner of the giveaway from a long long time ago.  Thank you all so much for your patience these last few months as my posts have dwindled.  There are some seasons of life where we need much grace, and this last year has definitely been that for me.

Looking forward to brighter days with the best people in the world who have stuck by me through it all.  I love each and every one of you, even those of you I don’t know who are reading I pray for you and love you just the same.

%d bloggers like this: