Get a Grip on This, Kailan, and "Get Us There"

You know those machines that astronauts use to practice what it'd be like if you were tossing and turning and they have to steer it to equal it out? They are rotating back and forth, all around, side to side, upside down, and they have to get a grip so they can calm the machine.

That's how I feel now. This upcoming surgery is 2 weeks away. My emotions are nervous, scared, anxious, fearful.... Physically, I'm tired and starting to become scatterbrained. I can't ever remember anything. I can't wrap my brain around what I'm supposed to do. I'm panicked about trying to keep everyone healthy so Tesh does not get sick. I'm being forced to give up certain projects that need to be given up, so I can concentrate on "getting us there". The machine is spinning out of control.

Thanks to the fellowship God has given me, I'm able to do just that. "Get us there." I must be still for a moment, collect my thoughts, and allow God to calm my spirit and use me to "get us there"

I knew that I might do this at some point, but I am starting to invert. I"m incubating my household very willingly, mainly because of germs, but also, because I need it. I need to be left alone with my King and my paper. I need to get a grip on this chaos. And the only way I can really do that is.... to...... stop. Take a breath...... and take one step at a time and get us there.

No matter how fearful I am, "we'll get there." No matter how tired I am, "we'll get there." No matter how painful it will be, "we'll get there." No matter how crazy and strange it may seem, "we'll get there."

I know we'll get there, cause He will give me the courage to get there. He will give me the strength to get there. He will watch the beauty unfold that only comes by pain to get us there. He will give me the peace and patience it will take to get there. Why? Because He is.


"I will go through the fire, if you want me to." - Ginny Owens

Another "Cranio Mommy"

I have been talking with other mommies on this site called craniokids.org. That's where I met Amanda.

Amanda has a son Sawyer that is 1 month older than Teshura. The suture he has fused is his metopic suture, that gives his forehead a triangular shape to it. He will have to undergo a full reconstruction on his head in July. Although Amanda and her family live in Des Moines as well, they have chosen to fly down to Texas for his surgery. There is a very famous, "cranio" neurosurgeon down there and is known to be one of the best.

Living in the same town, we decided it was time to meet. We wanted to see eachother's babies before they had their surgeries and to, of course, finally meet each other. We have been emailing back and forth for months about our concerns, triumphs and feelings over all this cranio chaos. Although our cranio babies look a little different, our fear is one in the same..... the well being of our special little ones surviving through such a surgery. We have both found comfort in the site, finding moms who are exactly in our predicament. But it's definitely a nice breath of fresh air to actually meet someone who is in the same boat, ..... waiting.... and worrying..... and waiting some more. This will have been my first time EVER meeting someone online and then arranging a meeting with them. We invited the whole family over for dinner. They were such a nice couple, and had 3 wonderful boys. The night went so well. Their oldest was Isaiah's age, and Isaiah met his match! (if you know what I mean) :) They got along well. Their middle one was Sarah's age, and Eve had fun with him. And of course, there's content Sawyer in the midst, lov'in on his mommy. He is so adorable, as you can see in the pictures.

 So, of course, we had to show off our craniobabies!
So here's Sawyer and Teshura!!

Me and Amanda
with our babies












I am truly thankful for the fellowship God has blessed me with. I sought and I found.

I am still waiting to meet Tami with her little Abby, but that won't be till surgery time. She unfortunately lives 3 hours away.

Short update on Tesh; We are in the midst of testing her for asthma, and thank you, again, to Dr. M (the ns) for protecting my Teshura. He's a mover and a shaker. I do thank God also, for bringing us to him.

We have seen God's power at every turn, and have witnessed His hand on Teshura many times. As a mother, that is priceless.

moment of imperfection

As I'm collecting my tears, it entered my mind to write about it, cause my wish for this blog is for people to see the realness of a grieving mother, and not some highly spiritual, always thinking right things even though I've lost a precious child. We are made to rise above these things, with every trial in our face. But just an hour ago, I had a break down.

Let me paint this picture for you, cause I know you mommies will relate....
         I haven't had much sleep the night before, waking very early at 5:30 am to my precious little bugger talking to herself, only to have to submit to getting up and feeding her at 6:30am. My 2 year old diva gets up and following her is my pistol 5 yr. old. All huddled on the couch, very early, and my husband kisses each and everyone of us, "Good bye" as he heads off to work........ on a Saturday......
By lunch time, I whip up something to eat for everyone, so we can get this show on the road to nap time. I put #4 down, she sleeps... I put #3 down, she sleeps....... I cuddle on the couch with #1 and eventually have to tell him to stop talking to me, so I can sleep. I've never been a good nap taker, but today I was really tired. So I finally feel myself nodding off, only to hear #4 waking early and talking to herself. I leave her, praying and hoping she goes back to sleep. Then #3 wakes nice and early, repeating over and over and over...... and over..... "I have to go potty, mommy." She's of course stuck in a crib, (which about now, I'm thinking we might get that toddler bed out.) so not until I've gone crazy inside my head, do I get the gumption to push myself off the couch, I lose my stability cause I was, after all, half asleep. Take her out of the crib, #4 starts to cry at this point, #1 is totally conked out on the couch, ....... I wish that was me.....
#3 so graciously wakes #1, who then starts to beg me to get "get them a snack" (if you want to see a pet peeve of mine, it's right there!) I snapped at him, telling him to wait, and not talk to me right then cause I'm trying to wake up. I've got #4 in my arms, and of course, she's smiling at me, but I'm boiling inside at this point. I'm so tired, I could've cried.
Hubby calls me to let me know he's coming home, but I know that means that I need to get ready to go cause we have outing plans with family. I'm still in my pj's, of course. This poor man says one innocent thing, and I break. I got mad at him, and I know he meant well, but it's like I couldn't help myself, I started crying all over the place, hung up on him (don't ever do that) and expected him to understand. Which I must say he was very gracious with me, knowing that something had to be off about me. In tears I told him, "I'm just tired!!! I wanted to take my nap and I couldn't!!"

ugh, my tears did not stop there. He offered to take the kids real quick to the store run, so I could have a minute alone, and then it hit me. I AM tired,...... but I'm feeling very very guilty. Why? because of #2. The one that's absent. The one that I'd rather have here on my tiredest of days, just so I can feel her again, and kiss her face. And I'm griping about the kids driving me crazy? What kind of mother am I? Of course, my sweet husband is telling me, "every good mom needs a break now and then." But for some reason, it wasn't setting well with me. I hated feeling this way. I never want to feel this way. I don't like needing breaks from my kids, I want to spend every moment with them, so I don't miss a thing. So if anything ever happens to them, I'll have all these memories to cherish cause I didn't miss a thing.

I had my cry out, and was left alone, and now I'm writing about it, to vent, to show that Kailan does bleed, but also .....
I want to say that in moments like these, it's when I'm humbled and shown how selfish I can be. I want to be able to say that I fixed my attitude right away, but most of the time, I don't. Sometimes I just have my bad days. The house is not clean, Josh is waiting in the van for me to get dressed so we can go, and I must work on my heart on the way to our destination. Life goes on, even when we just wish that time would stop. And, sometimes, that just sucks.....    (excuse my language)

Somehow in all this, He still loves me.... and thinks I'm precious..... precious Kailan, throwing her fit....

Iowa City- Take 2

Last week's appt. went very well. The ball is officially rolling, and now I have new worries, that I'm working through. We have one month to keep her healthy for surgery, she cannot be sick, otherwise they will have to reschedule. I'm sure you families that have little one's can appreciate the fact that it's hard to keep kiddos from getting sick when the weather changes. She cannot have a rash, which she seems to be proned to, but we're getting that figured out as well. It seems her skin is just as sensitive as her insides. :) And, of course, if an emergency happens, (which we'd totally understand) then our surgery could get canceled, even at the last minute.

So smooth is what we want, but as we all know, smooth is rarely what we get.

When we saw Dr. M this time, he seemed much happier and pleased with her progress. It felt good being able to tell him, "She is milk soy protein intolerant, and she is 17th percentile, weighing in at 13.6 lbs." Then, of course, he got right to the point. He asks me, "Are you ready to go then?"
"Yes" we both reply.
He said, " My next available is not until July, but I don't want to wait that long for her, so I'm going to squeeze you in." He left and came back, saying, " I'm going to fit you in May, how does that sound?" I smiled and nodded, he continued explaining, "There is another baby that is doing a full reconstruction and you will be after her."

~Now let me break here, for just a moment, to give you some background. I have been on this site called craniokids.org. It's a support site that has lots of parents, mainly moms, talking with each other, supporting one another that are going through these same things. There are different kinds of cranio, so everyone looks a little different, but it's the same underlining fear that drives us to this kind of support. I've been talking to a few Iowa moms, but one in particular, is using the same docs, same hospital, and everything. So it's been nice as we are both treading alongside each other. She lives in northern Iowa so I've never met her. They were scheduled for surgery a few weeks ago, but it got canceled due to the little girl having a high count. (?) So they rescheduled. I knew, by what she's told me, that it got scheduled for May 13th. So when Dr. M was telling me "May" and that he was doing another little baby, that morning, I thought, surely that's her. ~

I asked, "What date?"
"May 13th." He replied. I was smiling so big at that point, they probably thought I was a little weird. I was so excited. I may be being to zealous, and I know this doesn't happen everyday, but I thought, 'surely this is going to be it, cause how could it not be God ordained that we end up being together with something like this.' I have learned that both, this woman and I, have gone through many trials and are about to face this next hurdle. God has blessed us with this special fellowship, and that excites me. There will be some family there of ours, but it will also be so nice to be in the company of someone who knows exactly what we are going through as parents of these sweet babes.

We were able to ask his P.A. questions while Dr. M went on to his next appt. She is very nice, and answered all our questions very patiently. We will go to the hospital the day before for pre-op work ups, we'll hopefully stay at Ronald McDonald (with this other family as well) and meet them, then in the morning, we'll have the chance to sit with the other family until Tesh is ready for prep for her surgery, which may not be till noon, maybe 1.(They are shaving her whole head for this) The surgery will last 4 hours, from start to finish. I will not be able to hold her for a few more hours after that, concerning everything is going well, she needs to be stable. They'll give her morphine for the first day, and only maybe a dose the second day, if needed. Otherwise she'll be on Tylenol or Motrin! Can you believe that? We'll be in the PICU for 2-3 days, then sent to a normal children's room, for another few days, until swelling goes down. The swelling has to go down enough for a protective helmet to be placed on her poor head before we are able to leave. She will have suture stitches that will be taken out after 2 weeks. She will wear the helmet for 6-8 weeks. (yes, I am totally decorating that thing :) So that's the plan. Even though this is very hard to imagine actually doing all this, I know that she will be fine. Of course, that's what my plead to the King is. These babies have been known to bounce back from surgeries like this and amaze us parents as they do it. One year from now, no one will suspect that she's even had surgery. That's what I'm told anyway....

God is so good. God is so good. God is so good.... He's so good to me.......

Thank you Lord......  for going ahead of us, on this road we are about to embark. Thank you for the fellowship only You could have provided. Thank you for my sweet Teshura, my sweet "gift" that You've given us. Thank you for opening my eyes to what Your love feels like, even when we are hurting and suffering.

For better or worse...... I'm Yours and You are mine.....  

Holding the Ball, and Ready To Roll

I know it's been awhile since I've posted, but I was kind of waiting for something to post about. The torment with cranio is that all you can do IS wait..... . wait for appts., wait for surgery, wait during surgery....... I'm learning a lot of patience with all this.... something I'm not good at.
But there IS something I've been biding my time with, along side of digging in with Josh to find a youth pastoral position for him/us:) ... is getting this little thing fatter!!! I wasn't expecting to gain weight myself but whatever......

Last week she was a total of 13 lbs. 3oz. !! She's in the 17th percentile, which is a number I thought we'd never see out of her. Isaiah would run at the 25th when he was a baby, so she's catch'in up. I'm so happy about this. It's made me all the more confident with surgery too, because I'm not looking at this frail baby anymore, thinking ..."she has to have head surgery......." I'm looking at this fatter baby, thinking..."ok, head surgery, here we come. Let's get this over with!!"

Here's pics of her 1 1/2 mos. ago,
and then now!! She doesn't even look like the
same baby.






Now my calmness is a product of,  first) My merciful Savior showing His grace, second) having the blessing of other things going on that I can throw myself at, (not being selfish, but serving), and third) being gifted the priceless fellowship of other believers, and some of them having gone down this very same road. (they've been such a support to me and patient with me as I prod them with all these questions.) Notice God is in all of these things. It can not be done without God. Some people beg God for His peace, and think it should be this divine feeling after doing nothing. Everything that God does it active. Is that safe to say? If you are not actively pursuing God then you will not see Him. Something else may find you....

Because of all the trials I've been through, I have learned that seeking out God is seeking out the opportunity to be with God. Not that He's not beside you all time, but if you want peace to your life then YOU must stop the chaos. Here's the trick....... be still, and move at the same time. When He tells us to "Be still.." (these are my thoughts) He follows it with "... and know that I am God."(Psa. 46:10) I believe that to "be still" is to embrace the fact that you are not in control. He is the One in control, not I. "Be still and know that I am God." In my NASB version it reads. "Cease striving and know that I am God; " - on a side note it reads that the phrase "cease striving" means to let go, relax. So.... be still, relax, let go, cease striving and "know that I am God"
But then we are called to move. Acts 17:28 "for in Him, we live and move, and exist....." He tells us to go and serve and make disciples. He tells us the new commandment. "Love God, Love others"

Love God (be still), and love others (serve, move)  This is the only way to evangelize, my friends. When you love like this, people see and feel God. Not to mention it makes it more desirable to choose Him.

anyway, sorry, rabbit trail......  I'm still learning these things which I've said. I have yet to master these things. But with every trial, I am that much closer. I'm not going to claim I'm going to be as calm as a cucumber on Surgery Day. But what I will claim is that Today I am glad because of Him. Today I am overjoyed because of His blessings and power. I'm glad the He is He, and I am His.


Here's some updated head pics of her at 5 1/2 months old (pre-surgery)