Sunday, May 31, 2009

Not Me Monday - June 1, 2009

Welcome to Not Me! Monday! This blog carnival was created by MckMama. You can head over to her blog to read what she and everyone else have not been doing this week.

I did NOT look at my calendar and freak out, just a little, because it's already June. JUNE, people! What happened to May? And April and March, for Heaven's sake? Mind you, I did NOT react that way. I would NEVER get behind on calendar upkeep and be caught off guard by a new month (Sixth month of the year.. where the heck is 2009 going anyway?) That would NEVER happen, not at MY house.

I have not become a teeny, tiny bit obsessed with my stat counter since installing it. After all, I write this blog because I feel called to do it and it helps me process my feelings, gives me a place to share and remember with Seth. It is certainly NOT about how many readers I have. So I certainly have NOT been getting a little excited about being able to actually "claim" more than "five faithful followers". (Fifteen?) Nope, never happen, not at MY house.

I have NOT been shirking my household responsibilities in favor of other more fun activities (like blogging, and exploring stat counter statistics). I would NEVER make my kids wear clothes out of the dirty clothes hamper. That would be JUST wrong. I would certainly NOT let "Mt. Washmore" take over the whole laundry room.. (Uh, the whole house?) (For the record, if this WERE happening, it might possibly be because laundry has always been one of my weak points. In all fairness, it has been worse since Seth, but of course:) NEVER happen, not at MY house.

I did not abandon above mentioned household duties, today, in search of more fun for my family. After spending a bit of time doing park clean up for our church's "Outside the Walls" Sunday, Leland and I did not pack up the kids and head to the local amusement park. If we HAD done that, I would certainly not have joined my oldest son on a ride called "Panic Plunge". Said ride would not have been the type of ride that takes you 100+ feet straight up into the air over a mere 30 seconds, and then plummets you down over a mere FOUR seconds. Nope, I would NEVER take my 11 year old son on a ride like that. Never happen, not on MY watch.

Those are NOT Sean's feet (in black sandals) and my feet (attached to the embarrassingly white legs)

I did NOT scream like a girl. Sean and I did NOT agree that, yeah, we might do it again! (Not today!)

And we, as a family, did NOT finish our glorious weekend with a special little treat.

Saturday, May 30, 2009

Then Sings My Soul Saturday - Hosanna

Join Amy at Signs and Wonders to see songs that are making the souls of others sing today also!

This is a song we started singing at church when I was pregnant with Seth. I was especially moved by it because it has the line that says "In your kingdom, broken hearts are made new, You make us new". We also sang this (at my request) at Seth's Memorial service. Now it IS true that Seth has a new heart.. And God is working on MY broken one.

Wednesday, May 27, 2009

Thankful Thursday - Small Graces

Thankful Thursday at Truth 4 the Journey

My Thankful Thursday this week is not going to be in traditional list form. I hope that Sonya at Truth for the Journey will let me slide! I'm pretty sure I'll get at least five things..

Today, I'm especially grateful for small graces. I know that I am a daughter of the King of Kings and that God loves me but occasionally, especially when I'm hurting, I need to be reminded.

I am grateful that Tatyana's heart cath went well. She was feeling a teeny bit better and ate a bit of dinner tonight. I am grateful that God gave me the opportunity to be there and sit with Chantelle this morning. While I was there, JT, Tatyana's dad, bought me a Pepsi. He didn't have to and it was a small thing for which I am grateful.

At the hospital, I had the opportunity to check-in and visit with the nurses and other staff whom we met while on Seth's journey. I'm always blessed by the hugs and warm smiles we get when up on the floor. It's a small grace that often feels larger!

Upon leaving the hospital today, I had no money for parking and the ATM was broken. I was given some parking validation stickers but the parking attendant said they were not valid. In the middle of explaining our situation to the parking attendant, rummaging through my purse, I DID find $5 and the parking attendant just waved me through anyway. (Yes, I told her I'd found the money to pay). It was a small grace.

I took the kids up to our local library this evening. I spent 45 minutes looking for our library cards before I gave up and decided we'd ask for replacements. The librarian was concerned that if they were JUST misplaced, we would waste the $2 replacement fee (per card). I told her that I was sure they WERE just misplaced. (I changed out wallets shortly after Seth went to Heaven and can't find the old one right now). But, I said, we lost a child in October and there's a good chance I'll never find them among the piles of stuff. I did NOT tell her for sympathy. It's just the truth of our situation. She waived the fees. Another small grace.

And finally, there's this:

Someone left a balloon at Seth's marker on Memorial Day. It wasn't us. I just tonight found out who it was. Remember Mary and baby N? The baby they lost is at the same cemetery as Seth and her family left the balloon.. A small grace. "Mary" sent me a note tonight, letting me know it was them, and saying that their family grieves with us. I know that to be true and I'm VERY grateful for her presence in my life.

And I think now is a good time to share. "Baby N"? The N stands for Nehemiah which means God's comfort. I am SO thankful for God's COMFORT!

Walk With Me Wednesday - Prayers

I'm not going to go into huge detail.. I don't want to embarrass anybody. But today I'm remembering a day ago last July. I met a friend, Chantelle, on the Internet. We had connected via an HLHS email loop and her family was in Spokane. They were new to the area, having just moved in October. Chantelle shared that her daughter Tatyana was having her Fontan (the 3rd HLHS surgery) at Sacred Heart Children's. I emailed asking, if all went well, if we could come up and meet them. (As it happens, we had a cardiologist appointment at the hospital two days after Taty's surgery.. which given how OFTEN we saw the cardiologist is NOT a huge surprise). When I got up there that first day, Chantelle wasn't there. I left a note. I'm pretty sure I missed her the second time too. But as they say, 3r time's a charm and it's a MEMORY! I probably won't forget even without recording it here...

At that point, Tatyana was having some complications. I can't remember the details but she still had chest tubes, they were worried about chyle thorax, etc. Chantelle had come in and for various legitimate circumstances, her "mama bear" was in full mode that morning. Having JUST met Chantelle (mere minutes, seconds maybe!), I got to witness, as she herself puts it, her "head spinning like Medusa". :) I could tell that she was just a mom who wanted the BEST for her child, like we all do. I was grateful I had left Seth at home with his dad and I was able to busy myself playing with baby London! But you know, I LOVE Chantelle. She's been a great friend and I'm blessed to have her in my life. And her family needs our prayers.

Tatyana, as I previously mentioned, has protein losing enteropathy. She's having a heart cath today. Chantelle took her in and had her admitted to PICU yesterday as she was incredibly weak and not eating. PLEASE pray for wisdom & discernment for the doctors, for wisdom & discernment for JT & Chantelle as they oversee their daughter's medical care. I got to talk to Chantelle for a bit last night and was DELIGHTED to hear how well she was doing emotionally. She was experiencing peace that she couldn't explain.. Please pray for that to continue and for their family to draw close to God during this difficult time.

Thanks, friends!

Because I can't resist sharing this cute picture of Seth - from that time frame (last July) - Seth and Tatyana's baby sister, London

One of my FAVORITE pics of Tatyana from her hospital stay last July

Monday, May 25, 2009

We Remember... Memorial Day 2009

I had a very interesting conversation with Sean this week. We were in the van. ALL our important, interesting conversations (or at least 90% of them) seem to take place while we're driving in the minivan. Sean mumbled something about Memorial Day and people not even knowing what it's about, just being excited about the day off. "Um, Sean," I queried, "Do YOU know what Memorial Day is about?". He confessed that he didn't really.. He thought it had something to do with people who had died and the military. I was glad to tell him he was closer than he thought. And nowadays, it's also a day to remember and honor those who have gone before us.

I apologize for the quality of these pics. I had to do some scanning and some settling. I've already mentioned my poor organizational skills, so I'm making do.

Today, in our household, we will remember:

"Uncle Cary" My mom's younger brother,
Donald Douglas "Cary" Savill
1948 - 1999

The top picture was taken in the spring of 1993. It's my Uncle Cary with the picture he painted and gave to Leland and I as a wedding gift. The inset picture was taken at the Savill Family Reunion in July of 1999. Uncle Cary was my FAVORITE uncle growing up. I'm grateful that he did get to meet Sean before he died and am sure that he is entertaining Seth in Heaven.

Grandpa Savill, my mom's dad
Donald Colin Savill
1925 - 2000

Both of those pictures were taken at the Savill Family Reunion in July, 1999. That's Sean on Grandpa's lap in the top picture.

"Grandpa Red" Leland's dad,
Monte Lee "Red" Bonnett
1935 - 2003

The top picture is Red holding Sean in December of 1999. The bottom picture is Red holding Cary and it was probably late 2001 (December, maybe?)

And of course, in our home, we'll remember:

"Baby Seth" Our sweet, sweet boy, Our little "tough guy,
Seth Douglas Bonnett
March 27, 2008 - October 12, 2009

The first picture was mid-August 2008, on our living room sofa. The remaining pictures of Seth were taken by the wonderful photographer, Heather Evans at Slice of Life Photography. She donates some of her valuable time to the hospital, giving families losing children, precious, precious ways to hold onto their memories. They were taken on October 2, 2008. I didn't realize until just now that the outfit was the same.

Today, as we do EVERY day, we remember.

As I"ve been going about my getting ready to go out with the kids today, I've been humming and singing a song that I feel is appropriate for this post & this day.

Sunday, May 24, 2009


Sort of. But only because I've already done "Firsts..." here. Last night, the kids and I attended an Open House BBQ at the home of my friends, Jeff & Patty, to celebrate Jeff's 50th birthday. (Which is actually today.. HAPPY BIRTHDAY, JEFF!). I almost didn't go. Jeff told me on Friday night that they were expecting between 50-80 people. I know very few of Jeff & Patty's other friends. I don't do well in situations that require mingling. But my kids enjoy their kids, I like Jeff & Patty so I sucked it up and I went.

I had forgotten that there would be introductions. Introductions that went like: Sarah has 3 kids, 4 year old boy twins and a 7 year old. Kathryn has 3 kids and they're close to our kids' ages. VERY few people at this party knew about Seth. His name didn't come up all evening. And I guess, as awkward and strange as it was, it needed to be that way. I"m struggling a bit. People talk about feeling "disloyal to the departed loved one" and the conflicting emotions that can bring up and I confess; occasionally, I would think that was ridiculous. I KNOW life is going to go on, Seth's not always going to be an up-front part of it. It DID feel odd to not talk about him tonight.. to not say, "I have FOUR kids" (although, really, all night I don't think I actually answered the how many kids do you have question even once).

So, all in all, this was a HUGE, saddening first. It IS okay that Seth wasn't a part of the evening for others. He is always a very large part of my heart. I get that it's not always appropriate to discuss that part of my life story. This is just part of moving forward. Also, it was interesting to me that this environment, surrounded by mostly strangers, was an ENTIRELY different experience than when I"m in environments surrounded by people who DO know about Seth, even if Seth is not mentioned (as was recently alluded to here).

The good news about yesterday evening? Next time I find myself in a similar situation, it will not be the first! I think (and hope and pray) that even if it is not easier, it WILL be a little less disconcerting.

Saturday, May 23, 2009

Then Sings My Soul - Inside Out

I stumbled across this meme quite awhile ago. And I debated adding it but I'm still figuring out the blog thing, it seems, and I wasn't sure about adding another thing. It really does appeal to me though. God really uses music to speak to my soul and I wouldn't mind sharing some of those stories on occasion. But first:

I mentioned a song we had sung at our Mother's Day service a few posts back, here. I'm not quite sure why I didn't at least try and look for the song then, but it didn't happen. Today it was posted on my pastor's blog, Fully Devoted. So I thought I would attempt to share it with all of you.


Friday, May 22, 2009

Godly lessons for from my kids #1

I'm starting a brand new non-consecutive series. For more details, read here.

The first lesson I"m going to share comes from Kayleigh. Obviously, since she is my 3rd child and Leland and I parented for 8 years before she came along, this is not the first lesson I've received. It is the one God's been working on my heart with lately...

So lately I've been thinking about trust. How/if/when I trust the Lord in my life. (What? You thought I had it all figured out? Ha! Sorry to disillusion you.). One of my first favorite verses (as I'm sure it is for a lot of people) has always been from Proverbs 3:5-6. "Trust in the Lord with all your heart and lean not on your own understanding; in all your ways acknowledge Him and He will make your paths straight."

It's fascinating to me how my understanding of that verse, my willingness to trust the Lord and my ability to surrender have grown over the years. I remember the first time I heard/read that verse thinking "YES! That's what I want." and I began, or so I thought, to trust in the Lord with ALL my heart. And then, years later, Kayleigh was born. I remember those first few months going from two to three being so hard. One day, I just laid down before the Lord and said "I can NOT do this." God said "Trust in me with ALL your heart" (and there was something about "it's about time, Kathryn, Ive been waiting for you.). And I did. Or at least I tried to lay myself down before the Lord.

If you've read this blog at all, you know we've been on quite a journey for the last year and a half. I would like to say that trusting the Lord has been second nature and make it sound easy. But it's not. I DAILY have to lay myself down and surrender what *I* want for what God wants for me. And honestly, some days, I do not even know what that looks like! So I just put forth my feeble efforts.... and THIS is where the lesson from Kayleigh finally comes in! Recently, Kayleigh broke a toy.

It wasn't THAT toy but it was basically a cheap plastic Happy Meal toy. She was mildly upset when I said we would have to throw it out. "But honey, it's broken." Her response? Without ANY doubt in her voice: "Daddy fick it." Daddy fix it. She didn't need to ask him. She didn't need to see if he could. She just trusted he would. Daddy will fix it. And God spoke to my heart about trusting Him completely.

The issues in my life? HE can fix it. My broken heart? Let Daddy - My Abba Father - fix it.

"Trust in the Lord with ALL your heart." Again, I'm reminded, ALL my heart. Even and especially the wounded, sad, aching parts of my heart. Again, I work on laying it all down, surrendering to the Lord. It's not easy (ever) but Jesus loves me. Together, we'll get there.

Daddy fix it. Amen.

Godly lessons for from my kids - Introduction

Coming up on my blog: I have a series of related thoughts but I'm not sure how long it will take me to get them all blogged out and I may not do it in consecutive "parts". What I've decided to do is introduce the concept and being with what I'm going to call #1 (coming very soon, later today!) and we'll see when/if/how long it takes us to get to #2, etc. Okay? Okay!

Being a parent is such an interesting endeavor. We are instructed to "train a child up in the way he should go" (Proverbs 22:4) and "bring them (children) up in the training and instruction of the Lord" (Ephesians 6:5). One of my very FAVORITE passages regarding children and teaching them the ways of the Lord is in Deuteronomy. "Teach them to your children, talking about them when you sit at home and when you walk along the road, when you lie down and when you get up." (Deuteronomy 11:19) Which would lead a person to believe that the ADULT teaches the child about God, right? Yeah, I know, I was that foolish and naive when I started parenting too!

I am not the first person to come up with this concept but truthfully, I learn SO much more from my kids. I SEE illustrations of how Jesus works in our lives. In the way I love my children, I am given mere glimpses of how much God must love me. I could go on and on.
My point is, I regularly RECEIVE Godly lessons FROM my kids. And I'm going to start sharing some of them here as I feel led to. Aren't you, my five faithful readers, blessed? (hee hee) (Oh, side note: someday I MAY actually start claiming fifteen faithful readers.. wouldn't that be something?)
For more on the concept of "learning" Godly truths from our children, I recommend Sacred Parenting: How Raising Children Shapes Our Souls by Gary Thomas.

Thursday, May 21, 2009

Somebody else's baby...

I went to the cemetery today. I hadn't been for awhile. I wanted to go on Mother's Day and didn't make it and haven't been since. I am planning on taking the kids on Memorial Day, and wanted to go then as I had heard they do a beautiful job with US flags.. and they do! The picture above is not the cemetery where Seth is but a very similar thing has been done with the flags and they are flying everywhere.

So I had a counseling appointment this morning and afterwards I stopped at the store, picked up a potted mini rose bush and headed to the cemetery. Grief is a funny thing, I'm finding. One of the many "side effects" is that it seems to be isolating and somewhat self-indulgent. Let me explain what I mean, or at least attempt it. I find myself more frequently in situations that have nothing to do with Seth or our loss of Seth. Of course, I do, time marches on. And on one hand, I embrace that. And on the other hand, it can be SO so hard as I still feel like my heart is broken into pieces and I"m trying to put on a "happy face" and move forward. I have been lately wondering if I hadn't made it too much about "me". If I'd taken my focus off God and become all wrapped up in my grief. If I was too consumed with MY stuff.. MY loss, MY hurting, my inability to REALLY cry as when I feel like I need to or want to, I'm too surrounded by children to be able to do so.

So I took the yellow mini rose bush to Seth's marker. And immediately recognized the outdoor carpeting on the grass.. I didn't stay long because of the tent being assembled mere feet from where Seth's body lies. Today, somebody else's baby is being buried. I drove home, overcome with compassion. I stumbled in the door, threw myself down on my bed and cried. You know, "the ugly cry".

I don't know if I can explain what that meant to me. Or if it will make sense to anyone who hasn't been through this type of loss. Or if it will make sense to others who have. But I was almost relieved to experience that type of reaction FOR somebody else. It truly wasn't about MY loss or Seth.. but the fact that out there, so close to our home, another mom is hurting, experiencing a loss no mom should have to endure. In this fallen, broken world, I was SO grateful for the opportunity to experience that kind of compassion and to intercede for that mom, asking God to bring her peace and comfort.

God is so faithful to keep showing me that if I can only trust in Him, He WILL bring me through this - triumphantly so. I can be a better witness for Christ, a better servant of the Lord and THAT is what I am MOST grateful for after all!

If you promise..

.. not to notice the horrific mess my house is, I'll share some fun pictures I took this morning. Would that be okay?

Quality wise, I don't have TERRIFIC pictures. I have a Kodak point and shoot digital camera. If I were getting a new digital camera today, I would pursue other options but for now this is what I have. I do enjoy taking pictures though, especially of the kids. And close-ups of flowers and things but Ill save THOSE for another day.

So, if you've been reading my blog at all lately (all five of my faithful readers..), you saw this post where I talk about patience. In it I alluded to asking my big boys to "stop wrestling or playing football in the living room for the fourth time in fifteen minutes." I know you all thought that was for mere comedic value. I present you with photographic proof!

What you CAN'T see in these pictures is that Kayleigh was sitting on top of that rubbermaid container, kicking it with her feet and chanting "De-Fense, De-Fense". She's such a cheerleader for her big brothers!

And no criticizing my messy living room, you promised!

Saturday, May 16, 2009

Broken calendars...and a WINNER!

Today's been such an interesting day... It was the one year anniversary of bringing Seth home from the hospital as illustrated here. And really, as far as that goes, it was an okay day.

I have been a LOUSY calendar keeper for the past 7 months or so. I didn't realize how much so until just tonight. I have a brand new 2009 calendar. I JUST tonight broke the seal on it. I am trying to make summer plans for the kids, camp, etc.

As part of my process, I went through the 2008 calendar. It was bittersweet to see all the dates marked for Seth, during pregnancy (non-stress tests twice weekly, fetal echo's, etc) and after he was born. And as I went through the calendar, there were dates marked for his surgery and his heart cath. And there were dates written on by my mom when she was here taking care of the big kids for us. And there's a few things written on the calendar in October. And after that, the calendar is practically blank. Which says sad things about the type of mom I've been for these last 6 months. And telling things about what grief can do to us. ::::: sigh :::::::

Moving on....

Remember this little beauty here:

Uh, not the GIRL, the PUPPY. She has a name!! We (more on that in a moment) picked a winner. Can I just say how much I enjoyed this? Thanks to ALL of you for taking the time to comment and give us options to consider. I see why MckMama does contests. You guys are FUN to read!!

If you haven't already, go back and read the comments on this post. There were so many great choices. Some of our favorites (but NOT the winners, wish we were getting more than one dog!): Molly, Peaches, Sadie. One of my favorite entries was "Sydney" by HolliLynn. We might have even considered it EXCEPT:

That big momma dog with the little puppies? (Including ours!) SHE is already Sydney!!

So without further ado, because we've waited long enough, OUR puppy will be called:


Thanks to JD who wrote:
Sheba! She (she's a girl), and "Baaaaaaa" because she's a sheepdog / shepherd ;) S to honor the first letter in Seth's name. And Sheba is a Biblical name!And, well, puppies, they tend to rule the coop, and you know she'll reign in your house... Queen (of) Sheba?

JD, email me and I"ll get your gift card to you! Starbucks or Amazon? YOU pick!

For the record, I hadn't really thought of the "s" thing until you guys suggested it. A couple of different sources have Sheba as meaning "promise" in Hebrew and "kingdom" in Aramaic. I can live with that.

Oh, and that "we" I mentioned earlier? That would be Leland, I, and SEAN! That sneaky boy read my blog and has already been surprised with the knowledge that we're getting a puppy! He promised not to tell and agreed that Sheba was a good name!

Thanks for your help!!!

Friday, May 15, 2009

A year ago today..

This small boy...

after spending 50 days in this same hospital room...

His first 50 days, and the first quarter of his life..

Got dressed in these fancy duds...

Cuddled with this nervous mama.....

Was placed in this (picked just for him) car seat...

And taken home...

Where he was welcomed with open arms.....

by this VERY experienced big brother...

and this less experienced big brother...

and this novice big sister.......

Creating this happy picture of four lovely children all together in our home.

A picture that lasted for all too short a period of time.

We ALL miss you, Seth. Thank you for blessing our lives.

Thank you, Jesus, for the grace, courage, and strength we witnessed in and through the circumstances surrounding our small miracle boy. We are grateful for the time we had with him and anxious to see him again in Heaven. In Your time.

Thursday, May 14, 2009

My First Ever Blogging Contest!

Saturday - 9:00pm: Comments now closed. Winner announcement coming soon.

Edited to include additional guidelines. See below.

Alright, readers (all four faithful followers, hee hee), I'm going to lighten things up a bit today and host my FIRST EVER BLOGGY CONTEST. Are you so excited? I AM! If you were paying attention on this post, and I'm guessing most of you were NOT as I did not get a SINGLE comment on the section to which I refer. Ahem. But I digress.

Our family is growing. Sssshhhh, don't tell the kids. It's still a surprise. We're getting a puppy! This adorable little sweetheart right here:

Isn't she cute? Her name is currently "Bailey" and while it's a perfectly adequate name, I suspect we'd have a lot of confusion around here. Cary & Kayleigh already sound a lot alike. Can you imagine if we add "Bailey" to the mix? Truthfully, I'm more worried about hollering at Kayleigh ("NO, Kayleigh!") and getting poor Bailey all disoriented. So we need to


I'm not quite sure what the winner will get but I promise it'll be worthwhile. (I'm thinking a $10 gift card to Starbucks or Amazon). Plus, you get the honor of having named our puppy! All you need to do is leave a comment with your suggestion. I don't care if you have a bunch of suggestions but I'd REALLY appreciate it if you put them all as one comment, okay? So pretty much my only rule is one comment per person but feel free to make as many suggestions as you want within that one comment.

"Bailey" (soon to be someone else) is 100% Australian Shepherd. She's 4 weeks old and will likely be coming home soon. We're excited but she needs a name. And just so you know, I'm running the contest so I don't have to listen to my kids argue over what we name the dog! I'm going to just pick the winner and there we go!

I'll probably close the contest Saturday night. Thank you!

And just in case you'd like some additional guidance (you know, to increase your chances of being picked and all).. Our previous pets have either had "cute" names or names with meaning or some combination of the two.. I had hamsters, "Peanuts" & "Popcorn", a cat "Kisses" (cause she gave them out), dogs "Archie" which was short for Archimedes.. who in addition to being a famous old Greek guy, was the name of the owl on Sword in the Stone, & "Jitters".. We also had a Ginger and a Sophie, both already named when we recieved them and we kept those names. For this little one, I would like something somewhat feminine sounding, and with meaning!

If you've already entered, I am totally okay with your deleting your comment and substituting a new one with additional suggestions. When I close comments, I (and my husband who just found out about the contest, oops) will just go through the comments and see what we like!!

Have fun! Happy puppy naming!

Thankful Thursday - May 14, 2009

Thankful Thursday at Truth 4 the Journey

Another Thankful Thursday. I'm probably going to sound repetitive but I'm churning this out quick today as we've got lots to do. Here goes:

1. I am thankful for my husband. I really am. Sure, we have our differences but this morning he let me go back to bed (I"m coming down with something I think). When he left this afternoon for work, he hollered back into the house "Thank you, Kathryn" and I said "for what?" and he said "for everything!". How sweet is that?

2. I am thankful for Sean, Cary, and Kayleigh for bringing bits of joy into my life everyday! (As mentioned in yesterday's post, and other places)

3. I am thankful for enough food to eat, clothes to wear and a house to sleep, work, play and live in!

4. I am thankful that we live in such a great country. I may not always agree with you (generic you) or our political leaders but I have the freedom to disagree! And to work where and how I can and to worship as I desire. God Bless America!

5. I am thankful for our Heavenly Father who makes all of the above things possible! "Every good thing comes from above".

Wednesday, May 13, 2009

Walk with Me Wednesday - Snapshots..

Edited to add a "Cary snapshot" towards the bottom.

Oh, another Walk down Memory Lane with Lynnette! Yay! As usual, I"m late getting to it.. Better late than never, right?

Today, I've been thinking about snapshots. Not necessarily photo snapshots, but memory snapshots. Those "moments" literally, minutes in a day, that we think we'll capture in our memories for always. Of course, on our own, our feeble minds can't remember.. Heck, I'm lucky I can remember what I ate for breakfast! So, today I'm just going to share some random "snapshot moments."

All, yes all four, of our children have/or are currently, receiving speech therapy. Sean's been at the longest, starting when he was 2 and still getting some at school. Cary got a few years between age 1 and when he "graduated" late last year. Kayleigh got about six months of speech before Seth was born and has recently started up again at the school. Seth saw speech language pathologist (SLP) for oral issues, mostly feeding due to the g-tube.

I was recently reminded of a speech therapy session when Sean was about Kayleigh's age. He was working on the /k/ (hard k as in kitten or cake or carrot) sound. The SLP put a card in front of Sean and he said the word. They were flying through the list.. "Carrot" "cat" etc. A picture similar to this appeared on a card:

And Sean very earnestly stammered out:
"cu.. cu.. cu-MUFFIN" Years later, I'm still laughing about it!

I almost re-lived that moment today! Kayleigh has this tendency to drop her first vowels. She's currently working on s blends, st, sn, sk, etc. at the beginning of a word. The SLP reminds her to "let the air out of your tire" as Kayleigh says "sssssssssssss" at the beginning of a word. "Ssssssssnow" "Sssssssssssssski" etc. So today they're using cards. And Kayleigh's truckin' along and the image below appears on the card:

And Kayleigh stammers out:
"Sssssssssssssssssss Pee Yew!" (It sounded like "spew").

Cary "graduated" from speech therapy last fall. Our wonderful SLP saw him about once a month through November due to the "instability" in our home at the time. I was grateful. I couldn't think of a specific speech therapy to share but Cary offered up a similar example for me this evening! We were going to his 1st grade "musical" performance. I was asking him where he was standing on stage so I could sit in the right area etc. Cary says, "Oh, mom, I'm not going to be singing Twinkle, Twinkle, Little Star." Uh, okay? "I"m going to be paying the glockensmock."

The WHAT? Oh, GlockenSPIEL. Of course! And you do "smock" (smack) it..

Sometimes I forget that our kids don't always perceive the world the way we do. I'm glad. What joy those "mis-perceptions" bring to my life!!

Tuesday, May 12, 2009

In Other Words Tuesday - Answered Prayers?

Well, today is Tuesday and that means time for "In Other Words: Tuesday". Today Loni is hosting over at Writing Canvas. Head on over and check out the amazing, inspiring story she shared today, as well as what others have to say about today's quote. Keep reading for MY take on it!

Can I say how much I LOVED today's quote? Well, LOVED might be a bit strong. Actually, now that I'm REALLY thinking about it, I may not even like this quote from Gary House's book, Seeking the Face of God: The path to a more Intimate Relationship with Him. But here's the story.

As you well know, I HAVE learned that faith isn't tested by how often God answers prayers with a Yes. What kind of faith would it be if it were? If God were a "genie", what sort of faith would we be required to have? (Short answer: None). Believe me, I would like nothing better than to have all four of my children here, together, healthy and happy. I would. And I prayed for that. And because I don't get to just rub the magic lamp (and we live in a sinful, fallen world due to our free will), that's not what my life looks like right now. And I'll be honest, deep down, I'm rarely okay with that. I MISS Seth. Every minute of every day. I WANT him here with me, that's how it's SUPPOSED to be. (In my book anyway, right?). And it's not like that.

And, yet, I have faith. I have a Lord who loves me. I am BLESSED to be able to serve Him. Sometimes, right now especially, serving the Lord hurts. I've been taking Kleenex to the hospital (as previously mentioned). And as much as I "like" to go up there and see the nurses and some of the people who loved us through our journey with Seth, it is, EVERY SINGLE TIME, harder than I think it's going to be. I have been able to share parts of Seth's story. I have done those things because God has given me the opportunity and asked me to be obedient in serving Him. But bigger than that, I recieve grace from God to do those things.

Angie, Audrey's mom, shares on her blog, Bring the Rain, that when they told her Audrey would die, her response was "I think my Jesus is the same as He was before I walked into this room". My Jesus is the same yesterday, today, tomorrow. He was before Seth was born and He continues to be after Seth's death. And I AM grateful. For where would we be without Him? Thank God, I can cling to Him with all my might and never have to find out!

Praying for Tatyana

Look at this ADORABLE face!

Thank you for the prayers already prayed after my brief shout out earlier.

Tatyana went home from the hospital yesterday (Monday) evening. Her mom can manage meds at home and it's easier for a family, with an older and younger sister to take care of, as well as patient, to be together under one roof.

Chantelle posted an update on Tatyana's care page and gave me permission to re-post it here:

As some of you may know Tatyana was admitted to the hospital Saturday
because she was diagnosed with Pneumonia. After hours of test they were also
able to come to a conclusion on what is causing her swelling that has
progressively gotten worse since March. The good part for now is she came home
today and she had what is actually called Human Parainfluenza Virus type 3 which is often associated with bronchiolitis and pneumonia.( and yes it was sent to be
tested for Swine Flu results were neg.) The hard part is she has something
called Protien Losing Enteropathy or known as PLE.

What is Protein-Losing Enteropathy?
As the number of survivors after the Fontan operation have increased, an unusual and inexplicable ailment called "protein-losing enteropathy" or PLE, has been noted to occur in some children within a few weeks after the Fontan operation, or years later, in children who are otherwise doing well from a cardiovascular standpoint. Symptoms of this ailment may include swelling of the abdomen, shin and ankle area, and a change in bowel habits with the development of diarrhea and abdominal discomfort
Children with PLE lose protein molecules from the blood serum into the intestinal tract. Over time, the concentration of serum protein in the blood stream can be significantly depleted. One consequence of a low concentration of serum protein is the inability to maintain fluid within the vascular space. Low serum protein
levels can result in the accumulation of fluid outside of the normal vascular
spaces and in the abdomen, ankles and shins. An abdominal fluid collection is
called "ascites", and fluid in other tissues is generally referred to as
The loss of protein into the stool results in a change in bowel
habits with the development of diarrhea and abdominal discomfort. Edema of the
intestinal walls may result in poor absorption of food which promotes further
worsening of the diarrhea. Another consequence of intestinal protein loss is the
depletion of serum immunoglobulins which fight off infection. Patients with
severe PLE are therefore at risk for serious infections at a time when the body
is already weakened by other symptoms related to edema and ascitesPLE after
Fontan operation is a puzzling disease.

At the moment, treatment options are limited, but include:
1) general symptomatic relief by using diuretics and changes in diet
2) treatment at the intestinal level with steroids or heparin infusion
3) treatment at the cardiac level by improving hemodynamics either with medicine (captopril, enalapril), or with a fenestration or a heart transplant.
Still unknown is the precise mechanism of this disease and why it
afflicts some children and not others. Further research into the cause of PLE is
needed. Once the cause is better understood, more effective treatment options
may then be used for this troublesome illness.

~ I know this is a lot of reading but it seemed like the best way to explain it. ( was to copy and paste?)
I just hope and pray that she will make it through this. She is a strong little
girl. I just want her to be happy and play and not feel sick.

I believe they are currently managing Tatyana with medications. PLEASE be praying for this family! I know Chantelle is worried, who wouldn't be? Please pray for God to give her peace in the midst of this trouble time. Thank you, friends!