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)

2 words: Hormonal Imbalance

Oh MY GOODNESS!  Whenever I heard women, in the past, speaking of hormonal imbalances I just thought they felt a little icky and irritable, and needed medicine to control this icky feeling all the time. I never knew that it was so painful. Icky and irritable are minor details with what I've been experiencing. I've felt like I'm pregnant, on my period, AND possibly having menopausal symptoms. Not that I thought I was actually going through menopause BUT I sure felt like it. All these things hurt and were painful, among not eating, and feeling sick when I finally ate, migraine headaches galore!!! I was a mess with hot flashes, then chills, and trying to take care of all my kids during this, none the less. There have been a few family members (God love you for it) asking my husband if I was depressed or ok cause it was starting to show. Honestly, I've been feeling better, emotionally, but physically, I am not feeling well at all, most of the time, being in pain. Poor Isaiah, seeing mommy laying on the couch, often cause I just don't feel well.  I sure wasn't going to deal with this very long before I did something about it. (it's only been a month and a half) I knew that THAT was not normal, soooo, I met with my midwife and she is putting me on "the pill". Not too excited about that, but if it will make all this painful chaos go away, ....... whatever! Besides this will save me from the rigors of natural family planning. I know Josh and I want to wait to have more kids until my body has had plenty of time to heal, so it'll be ready to undergo a VBAC. (and yes, I've found a wonderful doctor who will do it) He said that I have good chances of it going well due to the fact that I've had 3 previous natural deliveries.
According to my midwife, the more children you have, the more crazy your hormones get. I didn't know that. I'm not sure how the Duggar mom does it, but of course, she just gets pregnant again... :) I did start seeing signs of this before I got pregnant with Tesh, but then they went away when I got pregnant, so that WOULD fix my problem, but we, UNFORTUNATELY, can't afford to have THAT many kiddos. And my body does need to heal from the c-section.

I've definately questioned having more babies after all that's gone on with Tesh, but now that she's getting better, and being more "normal" I've found myself wondering about what the next one will be like? Will it be a boy or girl? Oh my, I'm so bad. Someone told me that I was addicted to having babies. I think it's true.

Well, I'm definitely not as eager this time around, I am enjoying my little ray of sunshine now. Hopefully this "pill" works and does it's thang. Sometimes I do wonder if God really created us like this, or if this is just the result of "the fall" ..... I don't know. sorry, I'm not going to make much spiritual sense right now. I'm very very tired. It's 7 pm, and I can't seem to stay awake. yes, this would be another symptom. I actually slept in till 7 am this morning, "Thanks Tesh!" But yeah, I'm just tired all the time. I know normally I try to give everyone a nugget of Truth, but I don't have much but to say that God is sovereign and merciful, and even in my pain, I know He's holding me, telling me that everything's going to be fine. Because I can't see His presence in these situations, I have to TRUST His presence is there. There's that word again...... 

Today was a good day though..... and I owe it all to Love..... which can only be God-breathed.

On To The Next Thing....

I just wanted to say it officially....... we are NOT failure to thrive any longer. She will be 5 months old next week and she is weighing in at 11 lbs.15oz. The Pedi. said that they want their babies to double their birth weight by 6 months of age. Well, people, she was 6.5 lbs. at birth and we are close already. Praise God!

~Thank you my Lord and King for holding my baby in your arms and hearing our prayers for mercy. You have done great things for us, and continue to do great things. ~

I read on an old friend's facebook, on her favorite quotes, there was written this, "Perfect love casts out all fear - Bible"  When I think and meditate on that verse 1 John 4:18, I like to go back a little,

v.16 "And so we know and rely on the love God has for us. God is love. Whoever lives in love lives in God, and God in him. In this way, love is made complete among us so that we will have confidence on the day of judgment, because in the world we are like him. There is no fear in love. But perfect love drives out fear,....."

To fully experience this, I believe it would take a life time. What a Great God we have.

Please understand me, my body is worn, my headaches persist, I (Kailan) have fallen with my fear many times, and there is healing still happening and will continue to happen, but to have this stirring in my heart, it is like a drink of fresh water, medicine to my soul- something "the world" can not take from me.

We will breathe through this next obstacle.... the surgery itself. We see Dr. M April 9th. His PA said to me that he will do a "work up" on her when we are there that day, and schedule our surgery. She said it'll probably be within that month from the appt.

These life circumstances for the Wing Family have been a blessing in disguise, teaching Josh and I how to be content in all things (we've not been in ALL things yet), preparing us for the rigors of the ministry. We are no where near perfect, neither could one be, but I believe God sees our hearts in our strife for continued learning.

Our prayers now are for God to continue his mercy on little Teshura, that He make her strong for surgery. Also, praying for Josh and I to make a decision based on the discernment of where God would have him (our family) working and serving. It is a big undertaking, and my husband is a very loved man (if I may say so) and I am proud to be his wife and have been ready and willing to stand by him in where ever God leads him.

Switching Places

It's been a long while since I've been at a SIDS group meeting. For the longest time, it was Josh and I, sitting there being the 'fresh ones' and the support for us was tremendous. As I sat at that table, I listened to everyone's comments being directed towards a certain couple. Their daughter died, just five weeks ago. They passed around pictures, as so everyone did, cause of course, a SIDS parent has pictures on them at all times. But when I saw their baby girl, I looked at that smile, and thought, 'she was here, just 5 weeks ago.' It broke my heart for her, for them, and then came Sarah's face to my mind. Those last moments of kissing her soft cheeks, sitting on mom's couch nursing her, tucking her in before I left her...... there.......
When it came my turn to speak and to say any words of wisdom I was given by the Holy Spirit, I started with, "I'm 3 years out and......" I thought instantly, 'wow! 3 years..... I'm there. I'm where 'the others' were when we started coming there. We have switched places.'
I was no longer the fresh SIDS parent with that hopeless ache of no end, needing to be comforted. I am now, the one that is able to comfort, having hope that even though there is no end, peace still exists, the cool of the day exists, that the Kingdom of Heaven is still at hand. Where they are trying with every effort to keep their faces above water ( I remember well), I am standing waist deep with my arms held out while He, the One True Savior, is all around them. He is the One that is treading water with them, He is the One underneath them desiring to hold them up with time for healing, and He is the One flying over head taking charge of those waters, whether it is noticed or not.
Where is satan in all this? he is the seaweed that strokes our legs making us fear the water enabling the water to overcome us. Because of Jesus' name, because of what Jesus has done, He has given us power to overcome it. Sometimes I forget that power, because of my hopelessness. Instead of focusing on the shoreline, my attention is turned downward into the abyss. I would be lying if I told you that I never tread water and start to drown. I would also be lying if I said I have never looked at that abyss again.  But what would be honest is the fact that I serve a Faithful King. He has not left me, nor forsaken me. He has held my hand, and I have felt Him.

I left that meeting last night painfully knowing that they were going to go home to an empty house. I cried most of the way home, remembering that feeling of first stepping into the house after Sarah died, I was missing my baby, and for the first time, I prayed, " Lord, Thank you for giving me my trials, so I can comfort those hurting now." He knew more than I did, that I needed them in order to reflect the Light.  I came home, last night, to a full house because of what the Lord has done for me.

I encourage all who are reading this, to go and be comforters, in the way that God has made you to be.

1 Corinthians 1:3-7
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves have received from God. For just as the sufferings of Christ flow over into our lives, so also through Christ our comfort overflows. If we are distressed, it is for your comfort and salvation; if we are comforted, it is for your comfort, which produces in you patient endurance of the same sufferings we suffer. And our hope for you is firm, because we know that just as you share in our sufferings, so also you share in our comfort." 
 

I Hit a Curve Ball

The last 24 hours has thrown me some pretty good sized curve balls. Yesterday morning I thought to myself, ' you know, I really don't know if this neurosurgeon is going to do the same surgery as the last one planned, and I don't know if "a team" will be present also.' So I got the urge to call.... I talked to the secretary of this doctor and I asked my questions. She informed me that a team will not be needed for the type of surgery that he will perform. I asked what surgery he was planning on doing. She said the "strip" one, where he will make a cut where the suture needs to be, and widen it. He'll make a couple cuts on either side and widen the sides a little, and then she'll do "helmet therapy" for 3-6 months. I was very confused at this, cause all I knew was, that was not the surgery I had prepared myself for. There are pros and cons. The CVR surgery is more invasive, more blood loss, but the chance for resurgery is slim. This "strip" surgery is less invasive, a little less blood loss, but the chance for resurgery is a little greater, which frightens me. I asked her about the team part of things, and she said that this surgery he does alone, the other he does only for other sutures that are closed, and that the team gets involved for that. I was freaking out cause I was not prepared to hear all this. I thought we were on the same page, but what I was realizing was, I was still on the page of the previous doctors that were no longer her doctors. I cried to my mother, and she said very wise and comforting words to me.
"Kailan! Now is the time to understand what it means to trust in the Lord. You need to trust Him and trust that He is the one that brought you to this doctor. You need to trust this doctor, that he knows what he's doing and what's good for Tesh." Although I'm forever grateful to this doctor for standing up for Tesh, but I found myself still skeptical of his ability to treat her? Mom said the words I needed to hear. I'm not in control of this part. I do trust the Lord, I do trust that He sent us here, I do trust this doctor, and if he thinks this is best for her, then that is what will happen. So now I need to put that trust into action, and show my Savior and King that I am His bondservant. That was the last time I cried about the type of surgery and the doctor's decision.

Onto a different page, I turned my attention to her weight issues again, as I received a call from my Pediatrician. She informed me that she and the new GI doc. were talking and that he handed Tesh's case back over to her cause there was nothing more that needed to be done. I started explaining my concern for her having "milk soy protein intolerance" (MSPI) and she quickly said back, " yes, that's what she has." as if I already knew this. I was frustrated and told her that the old GI doc. never breathed a word to me about it. She said that she suspected it in the past, but then we ended up in the hospital and met with the (old) GI doc, and he investigated on it. .....slowly........ I was floored. I couldn't believe that it was a fact now, unbeknownst to me, that she has MSPI. So then I asked her to hear me out. My plea was for a formula that would, without a doubt, be something that he will tolerate, and grow from. I wanted her to be on Elecare. She, with no challenge, wrote the script for it right away. I thanked her enormously for that, and felt so relieved that this battle was finally over. It was like getting up off the ground and looking around realizing that you've just won and that time will finally begin to heal the wounds. I took a good deep breath and thanked the Lord for He IS good. I truly have so many things to be thankful for. So many blessings that I am able to touch every day. I've got a wonderful husband, beautiful children, and a house to clean.









I couldn't ask for more.


This does not take my fear away, for I am still nervous about the surgery itself. But what I do still have is hope, and hope does not disappoint. The sunrise was beautiful today. As I rest and recuperate, I am restored by my Father once again.