What now?

In our Devotionals series, Pastor Rick Warren discusses the Bible passages that inspire him the most. Today's Devotional is based on this passage:

"'What shall I do, then, with the one you call the king of the Jews?' Pilate asked them"
(Mark 15:12 NIV).

Two thousand years ago, in the Middle East, an event occurred that permanently changed the world. Because of that event, history was split. Every time you write a date, you're using the resurrection of Jesus Christ as the focal point.

What does this mean to us today? In one sense, Jesus Christ is still on trial. He's on trial in the heart and mind of every person who has not yet acknowledged Him as the Son of God, the Savior of the world.

Was Jesus a liar, a lunatic, or Lord?

Jesus claimed to be the Savior of the world. In John 12:47, He is recorded as saying: "I didn't come to judge the world. I came to save it." Some people say, "I believe Jesus was a good teacher." But, He couldn't be just a good teacher because a good teacher would not say, "I'm God, and I'm the only way to heaven." A good person would not say that unless it was the truth.

What's your verdict?

- Is Jesus who He says He is? Is He God? Or is He a lunatic or a liar?

- If He is who He says He is, when will you start following what He says to do with your life?

Today, you sit in judgment of Jesus Christ. Just as Pilate asked, "What shall I do then with Jesus who is called the Christ?" you also must decide whether He was who He said He was or not.

Funny guy

Last week my parents sent me some chocolate from England. Now, I have a sweet tooth (or 10) so I like most chocolate, but the Brits beat the Americans hands down in chocolate! Don't believe me? You'll have to try it one day, but I can't promise I'll share!!!

Last night I had a few of the small bars out for a bit of a chocolate binge. When Scott saw them he asked why they were out. I told him, "I'm going to eat them!" He didn't think I should, so while I went to feed Emma he hid them around the living room!

It took me over an hour to negotiate the location of three of the bars (which I ate!), but I never found the fourth and I didn't mind, I had indulged the craving and figured I'd find it today.

So, we went to bed. We usually leave one light on in the living room in case the nurse needs to come downstairs, so I put that on and turned everything else off.

Upstairs I brushed my teeth and put the new nightlight I'd bought, in the bathroom. We usually leave the bathroom light on all night for the nurses but our bulbs keep dying! A few minutes later I had to use the bathroom again (for a drink!) and I detected a strange smell. It was not bad but it did have a burning tinge!

I took out the nightlight and brought it in our room, explaining to Scott that I thought it was burning, but it smell like candy. He couldn't smell anything, but did ask if I'd switched everything off downstairs. I said I had, but had turned the one light on. Scott asked if I'd found the last chocolate bar, and when I said I hadn't he said I'd better go and switch the lamp off!

You guessed it, the burning candy smell was my LAST chocolate bar cooking on top of the light bulb! Before falling off the bulb, the wrapper melted into the chocolate, dripping chocolate all over the light bulb.

It was all very funny, and Emma's nurse had a good laugh too! The moral of this story - don't hide things where they pose a fire risk if not discovered!!

Our kids are going to have lots of fun with their dad when they get older!!

A new start

In our Devotionals series, Pastor Rick Warren discusses the Bible passages that inspire him the most. Today's Devotional is based on this passage:

"The Good News is about His Son. In His earthly life He was born into King David's family line, and He was shown to be the Son of God when He was raised from the dead by the power of the Holy Spirit. He is Jesus Christ our Lord" (Romans 1:3-4 NLT).

Although we study the passion of Jesus, His death on the cross, Easter is a celebration of His resurrection: God brought Jesus back from the dead, proving He'd broken the power of sin and death.

After Jesus died, they took His body down and put Him in the tomb, and a giant millstone was set in front of the cave. The religious leaders, worried that Jesus' body might be stolen, asked for Roman guards to be posted in front of the tomb. They didn't want Him coming out!

But of course, He did.

You know the story. But it's important to remember that Easter is not some memorial to a nice, good religious teacher who lived 2,000 years ago. It's a celebration of the fact that He is alive today!

I'm living proof—and so are the approximately 1 billion Christians who celebrate Easter. Jesus "was shown to be the Son of God when He was raised from the dead by the power of the Holy Spirit. He is Jesus Christ our Lord" (Romans 1:4 NLT).

Easter is the good news about God's Son, Jesus Christ our Lord, who came as a human baby, born into King David's royal family line. Four historical records say that after His resurrection He showed Himself to 500 people at one gathering.

Can you imagine witnessing His death and then seeing Him walking around Jerusalem three days later? What an amazing thing!

When Jesus was hanging on the cross, the skeptics and critics mocked Him and said, "If You're the Son of God, why don't You just pull yourself down from that cross? Why don't You just come down and show that You're really God?"

Jesus had something more spectacular planned. He said, "I'm going to let you bury Me for three days, then I'll come back to life to prove that I am who I say I am."

Happy Easter!

As is the custom here, we were up early for church today. there were two services, 9.30am and 11am. I was serving at the first, so we needed to be there as early as possible. As we also like to get especially dressed up for this most important of Christian celebrations, that meant a very early start, for a Sunday!

Emma was up at 5am as usual (she's been going to bed at 7pm, so she can get in a good 10 hours). Thankfully Dorothy likes to play with Emma or read to her, so she's quiet until the shift ends at 6am. I say quiet, I can hear her laughing, but it's like music compared to crying!!

We made it out on time (how??) and headed to church. But not before we got some quick snaps for you...

You may remember last year we sat Emma with Nate, our Pastor's grandson. It was a cute picture and we had to get a comparison shot this year. It's only when you see things like this that you realize how much she's grown (or maybe that's just me!!).

After lunch with all the family, during which Emma stayed in her highchair - thankfully, We all watched some baseball and Emma felt it might be time to read. She just couldn't decide which book to read...

Emma was finding crawling around in her dress a little awkward, and frustrating! So much so she kept having to stand her legs up.

We were very excited and encouraged this behavior, after freeing her from the dress!

By the time she got bored we got her moving in the right direction...

Easter: Shows Us God's Amazing Love

In our Devotionals series, Pastor Rick Warren discusses the Bible passages that inspire him the most. Today's Devotional is based on this passage:

"God showed His great love for us by sending Christ to die for us while we were still sinners" (Romans 5:8 NLT).

Everything that Jesus did for you He did out of love. The Bible says that God made you to love you. The only reason you're alive is because you were made to be loved by God.

If God didn't want you alive, your heart would stop instantly; you wouldn't even be breathing right now. God made you and wants you alive so He can love you and so you can love Him back.

God didn't just say He loved you, He showed it. The Bible says, "God showed His great love for us by sending Christ to die for us while we were still sinners" (Romans 5:8 NLT). It says while we were still sinners. Before I even knew God, before I even knew I needed God in my life, Jesus died for me.

There's a myth that says I've got to clean up my act before I can come to God. "I've got to get it all together. There are a few things I've got to get right in my life first, and then I'll come to God." No! You come to God with your problems—the good, the bad, and the ugly.

Why do we do this? It's like when we brush our teeth before we go to the dentist to have a teeth cleaning; or when we wash the dishes before we put them in the dishwasher; or when we pick up the house before the maid gets there! Why do we do this?

God says, "No, no! You don't have to clean up your act. Just bring it all to Me. Bring Me all your problems. I have the answer. I have all the answers." You don't wait. Jesus says, "Come as you are."

The Bible says, "He will send down help from heaven to save me because of His love" (Psalm 57:3 LB). That's what Jesus did on Easter. He sent down Himself from heaven to save us because of His love. So you bring your problems to God because He has the answer.

If you don't act on this news then the death of Jesus Christ and His resurrection is wasted for you personally. It makes no difference in your life. You may recognize the gift, but you still have to receive it.

The Bible says, "You will be saved, if you honestly say, 'Jesus is Lord,' and if you believe with all your heart that God raised Him from death. God will accept you and save you, if you truly believe this and tell it to others" (Romans 10:9-10 CEV).

God is not asking you to make a promise you cannot keep. God is asking you to believe a promise that only He can keep.

Cute snaps

This is a picture of Emma waiting for her shoes to be put on for church on Sunday. Unfortunately we can't find the other one of this pair!!

I'm not sure Emma's therapists believe me when I tell them she's climbing all over, so I endeavored to capture it on film...

Easter: Jesus' Trial

In our Devotionals series, Pastor Rick Warren discusses the Bible passages that inspire him the most. Today's Devotional is based on this passage:

"But Jesus remained silent and gave no answer. Again the high priest asked Him, "Are you the Christ, the Son of the Blessed One?" (Mark 14:61 NIV)

What's so important about Easter? It's important because it proved that Jesus was who He claimed to be. He was God in the flesh, and He came to earth to save us.

Three events occurred in dramatic succession on that Easter weekend: the trial of Jesus, then the death of Jesus, and finally the resurrection of Jesus.

Jesus actually went through six trials. In that one night, he was brought before Annas (the father-in-law of Caiaphas), Caiaphas (the high priest), the Sanhedrin (the religious Supreme Court), Pilate (the governor of Jerusalem), Herod (the governor of Galilee), and then back to Pilate.

At the end of those six trials, what did they find to accuse Him of? Nothing. He had done nothing wrong. They brought in people to make up phony charges, but those didn't stick. Finally they convicted him on one count: claiming to be the Son of God. That's the sole reason Jesus went to the cross.

Everyone who has ever been presented with Jesus has already made some kind of decision about who He is. You either believe He's a liar, or you believe He's a lunatic, or you believe He's the Lord. It can't just be "I believe He was a good teacher." He couldn't be just a good teacher, because a good teacher would not say, "I'm God, and I'm the only way to heaven." A good person would not say that unless it was the truth.

Jesus claimed to be the Savior of the world. In John 12:47, He is recorded as saying: "I did not come to judge the world, but to save it" (NIV). He allowed Himself to be put on trial so there would be no doubt about who He was. He could have stopped the trial at any moment; he knew He would be proven guilty and put on the cross—but He allowed it to happen. It was all part of the plan.

There are some things about parenthood that no-one can prepare you for. An example was this afternoon when I was putting the clean laundry away upstairs. I gated the stairs and was letting Emma crawl around freely (except for the bathroom - she thinks the toilet lid is a drum!).

Emma found her way to the fire extinguisher in our room (the nursing company 'recommended' we have one!) When she wouldn't leave it alone following verbal instruction I went over to move her. She started playing with her mouth and that's when I realized she was eating dust bunnies!

Even I can find the funny, if gross, side of that!

Emma further surprised me when I took her in her room to get her ready for bath time. I had moved the balloon Scott gave her for Valentines into the spare room for a few weeks and put it back today. When I laid her down she signed balloon - a sign I didn't even realize she knew! I was very excited and she kept doing it!!

On a different note, I had a midwife check-up today and everything is fine. I've gained about 11lbs total in 16 weeks, which is way better than last time! Of course now I'm not nursing I'll have to scale back my appetite indulgences. Well, after I finish the chocolate my Mum just sent me for Easter!!!

Genius

So as Emma and I were driving through the city today I spotted a shop sign that made me laugh and I just had to share it with you! Here is what the sign said:

"Curl Up and Dye Hair Salon"

Come on - isn't that the best name you've ever heard for a hair salon, and so appropriate for West Philly!!

I hope it made you smile too!

Freedom from the pump!

Emma is now almost 17 months old, and I am 16 weeks pregnant, so it seems like a good time to cut out the breast pump. Over the past two weeks I've been cutting down on the pumping, which has lowered my production and this morning I packed away the pump!

It has been over 16 months of pumping every 3-6 hours during the day! We often never made plans that meant being away from home for more than 4 hours, just so I wouldn't need to bring the pump with me! It's so liberating to not have to worry about it at all.

Of course, most parents don't have to worry about bringing formula with them for a 16-month old. But we are doing okay with that, it's pre-mixed and comes in cans, so we don't have to mix it when we're out.

Which brings me to the next topic, feeding! Today and yesterday I fed Emma with her therapists here. It's hard to explain how discouraged I get when I do it by myself, so I am happy to have them here.

Our main problem has been trying to get the food to the back of Emma's mouth as she didn't seem to know how to do that with her tongue. so what I've been doing is filling her mouth with food until it must be at the back! What should happen automatically is that she would swallow. That doesn't happen.

When she does swallow, presumably by choice, the food goes down so far and then she gags and coughs it back up.

The speech therapist seems to agree with my theory that she may have problems with the mechanics of swallowing, past her tongue. Something that simply putting food in her mouth will not change. It's what we've thought since the NICU, but since she is so receptive to food, I don't think anyone wanted to believe it.

The next step is to have a swallow study done, where they can see exactly what is happening inside her throat. Of course, that may not be conclusive and until she can talk to us we my not know what is behavioral versus biological.

Although this isn't great news I do feel a sense of progress in that we are looking more in depth and considering other possibilities. As no two Moebius cases are the same, we really have to not make any assumptions.

Thankfully I'm feeling pretty good and that makes it easier to deal with challenges.

This morning I put a selection of photos of Emma into albums, finally! The next step will be to try and caption them all! I know I won't be able to remember when and what they all are for long!!

New meaning

We are currently on a 21 day journey of prayer with our youth group. We have a guide book that we all read each day and answer some very thought-provoking questions. Some days have more relevance than others, as everyone is going through different things.

I am a day behind, so tonight I was reading Day 15, yesterdays section. It told a story about a woman who lost her husband in a very sad way on September 10, 2001. Of course the next day the world was changed and many people felt the loss.

It then referred to the night of Maundy Thursday, when Jesus was facing the greatest trial of his life. While we often focus on the physical pain and suffering he endured on the cross, we must also remember he was about to lose his Father, with whom he'd spent eternity in perfect communion. As Jesus was covered with the sins of the world, the Holy Father had to turn away from His Son, and both Jesus and the Father knew a different kind of pain.

The Pray21 book went on to ask about a time in my life when I'd desperately wished someone would rescue me from pain. I can think of two situations that fit this.

The first was when I lived in England. I was very lucky, great family, great friends, lovely home and a good job. But I was so lonely. No matter if I was out with friends or visiting people, I was still alone. Sure, I'd cry by myself, or busy myself so I wouldn't think about it, but it's just a temporary fix.

The truth is, no one person can be there to meet all our needs, or understand all our pain, all the time. Except Jesus. And I cried out to him for rescue. Guess what? He rescued me!! I didn't start an intercontinental journey of soul-searching. He came and got me where I was at. I just had to recognize what He was offering me. Peace, fulfilment, a purpose and a future.

The second time, more recently has been dealing with the pain, or grieving, over the difficulties that Emma has faced and will face. I won't lie, a big part of it is also the difficulties that impact me also (I am human people!!) Thankfully I knew right away that there was no physical rescue for us, but there is one who understands, can comfort us and can give us hope.

You see, as I prayed the prayer from the book I also allowed myself to talk from the heart to God. I shared my most despairing thoughts with Him. And then I listened. I came to understand that my most frustrating and heart-breaking moments are nothing compared to literally watching your child undergo horrific physical pain, anguish, torment (to the point of sweating blood) and knowing that you can not rescue them. Some 2000 years ago God had to allow Jesus to suffer so that he could fulfil His purpose, and in doing so save all those they both love.

As hard as I find it now to see Emma struggle with normal baby stuff like trying to walk and the medical stuff, how hard will it be to see her go through the emotional trials that are to come. I can't rescue her, because she will need to deal with things to come out stronger the other side. I can however watch, pray and be there when she comes to me.

And through it all I now realize that God understands, and is there for me always, to lift up my heart and to give purpose to our lives. This Easter is going to be a special time for me, like never before, as a loving mother and a grateful daughter.

"For God so loved the world that he gave his one and only Son, that whoever believes in him shall not perish but have eternal life.

John 3:16

I pray also for those who will believe in me through their message, that all of them may be one, Father, just as you are in me and I am in you. May they also be in us so that the world may believe that you have sent me. I have given them the glory that you gave me, that they may be one as we are one: I in them and you in me. May they be brought to complete unity to let the world know that you sent me and have loved them even as you have loved me.
"Father, I want those you have given me to be with me where I am, and to see my glory, the glory you have given me because you loved me before the creation of the world.
"Righteous Father, though the world does not know you, I know you, and they know that you have sent me. I have made you known to them, and will continue to make you known in order that the love you have for me may be in them and that I myself may be in them."

John 17:20-26

Rain Date

Emma woke up very early and very loud this morning! She had a stand-in nurse last night, the one we had at the start but Emma hasn't seen her for a long time so I think she was a bit scared.

I was tired, of course, so went and brought her into my room, where she eventually fell asleep. It took me a while but I did too - she does not breath rhythmically, she pauses every now and then which makes me pay attention!

We got up at 8am and were looking out of the window waiting for her therapist to arrive when I saw Scott getting out of his car! I wasn't too surprised, it was raining a lot and they are working outside so they get sent home if it's too bad. I was however very excited and cried out "Daddy's home!" I think I surprised myself at just how pleased I was!! It wasn't even a bad day, we just don't get to see much of each other in the daytime.

After therapy we went out for breakfast (UK people - it's the culture here, and often times it's cheaper than getting the things in for a big breakfast!). After that we visited with Mrs Thompson, one of Emma's favorite people. Scott went to his side job, which is actually a friends parents house and our friends just happen to be home for spring break, so I followed along!

I fed Emma while we were out and was sure she'd fall asleep on the way home, which she did. I put her straight to bed and wonders will never cease, she's been sleeping for over an hour!

(I should mention that Scott handled naptime yesterday and I think he may have had more success in keeping her in bed! I can't be the bad guy for everything!!)

Long story, great ending!!! And I finally got to clean the neglected dining room before we have the family over for Easter. What a good day, and it's not even 3pm yet!

Prayer Power

Tonight our church had a prayer night, which is kind of like a normal service, with singing and a message, but it all focuses on prayer and we spend some time quietly praying for the people in our lives.

We took Emma with us this evening, which was a gamble because she was great at church this morning but has been Whiney McWhiner at home! As it turned out she was good again (of course), but a little too heavy for me to hold for long. So I took her to the back of the sanctuary, where no one was sitting.

There is a raised seating area, about 1foot higher than the main floor, with a small step. Emma loves to climb up and down the steps - yes, she goes down feet first! She was very happy crawling around back there and apart from excited chatter, was good to go.

After a while Pastor Bob came back to go to the sound booth and on his way back to the front passed Emma standing holding on to a chair. Emma had been watching him since he walked past and waved so he stopped to talk to her (she loves PB, always watches for him and knows his voice!). She promptly pointed down to her red socks and started telling him something about them!! He humored her and listened until she lost interest.

At the same time as this little exchange everyone else was singing a song and the chorus was

And I'll stand in awe of You, Jesus
Yes, I'll stand in awe of You
And I'll let my words be few
Jesus, I am so in love with You
http://www.youtube.com/watch?v=12z4dvc2kjo

As I heard that and watched this precious little girl so innocent and special, tears of joy sprang to my eyes. I don't know what I expected Emma to be like as she got older, I don't think I ever look much past the day we're in!! I do know that it's only because of our love for Christ, and more importantly his love for us that we never lost hope, and have so much joy, despite the struggles.

Absence...

Today was an unusual day for me. I was going to a church seminar from 9am-1pm, and had to leave the house around 7.30am. It has been months (17 to be precise!) since I have had to do something like that (not including flights, vacation etc.).

I didn't sleep great last night, my wrist bothering me more at night than during the day, but I still needed to get up at 6am and shower if I had any chance of getting out on time. Thankfully Emma slept until after I showered and dried my hair.

I tried to be sneaky and brought her into my bed and laid down with her so she'd sleep until Grandma arrived. Apparently I don't do sneaky well and tried to leave her alone too fast. She popped right up and started climbing on my pillows! Graciously accepting defeat I turned the light on, the Disney channel and carried on getting ready.

Downstairs she was pretty clingy, probably knowing I was leaving so I did not get breakfast!

By the time I was ready to leave and she was being read to I stopped to say goodbye. As I crouched down she waved at me (this was not the first time I've gone out!). I also leaned in for a kiss and without having to ask her she obliged me with a sloppy smacker!

I am not entirely sure why but it was heart-wrenching to leave her today. I think because I knew I wouldn't be back until about 2pm, and not easily able to come home if need be. When normally I just go out to run errands or take a break nearby.

I know now that I would have a really hard time doing that even a few days a week to go to work. My hat is off to working mothers, because I'm sure that even if you handle it better, it probably doesn't hurt any less as time goes on.

For me it was a good reminder that being able to stay home with my children is a huge blessing. I'm thankful for it.

It's April, fool!

I can't believe it's Wednesday already, and April no less! Of course, I can only see the positive in getting closer to the summer. No April Fool pranks that I know of, and Scott was lucky to escape me tampering with his alarm clock - I felt sorry for him!!

It's been a good week so far, let me bring you up to speed if I can remember it all.

Sunday night Emma slept well, but was up early as usual. She had fun in the morning with Grandma Ellen while I hit the road for grocery shopping - it's just so much quicker by myself!

tired out from all the playing I put her down for a nap, and she slept for about 45 minutes as usual and woke up. I was not ready though and throwing caution to the wind quickly snapped her up and brought her into my bed where we slept for a good couple of hours. Unfortunately we slept until about 4pm, so when bedtime rolled around (8pm) she was not tired at all!!

When she started to fuss just after 9pm Scott took her up to bed and after a brief cry I heard nothing else. What was his secret? he decided to read to her from her baby Bible and she went to sleep. (you may see the connection here to my recent prayer asking God for help with Emma sleeping. Quite an obvious link!!)

On Tuesday morning Emma was up around 6am again and I again brought her in with me. And when we did get up, after she'd had 12 hours sleep you can totally tell! Always cute, she's so happy and content after lots of sleep.

We had a visit from nurse manager at Bayada, who assesses Emma every two months, I guess to make sure the nurses are taking care of her! She reported Emma had grown an inch to 29 ", her head (and brain) grew, and although not as much as you'd hope she has gained at least 1lb. Emma got to play with another stethascope which she enjoyed!

After lunch I decided to keep trying the nap thing and laid her down. She cried for a bit but was asleep by the time I finished the story! I was amazed and quickly hopped into bed for a nap myself. Unfortunately I could hear labored breathing on the monitor and woke her up trying to put the CPAP on!

Not to worry, we got up and headed outside in the nice weather. I wasn't in the mood to trek to the park so the front yard was enough! Here is Emma tackling the bumpy terrain in our yard...

and on the sidewalk

What I didn't catch on video was when I was waving to my neighbor Emma went head over heels over the walker and landed on her back with it on her head. She was fine and it was on the grass, but gave me quite a scare. Really, you have to watch them EVERY second?!

The good thing was that by 6.45pm she was exhausted ('cream-crackered' if you're familiar with cockney rhyming slang!!) and I put her to bed. I was able to clean up and start dinner unhindered before Scott came home. Sweet!!

Emma slept through the night and her nurse was able to get her back to sleep enough times so she didn't get up until 6.30am this morning!

I decided to brave the grotty weather to go and get my new drivers license (after fixing my hair best I could, and carefully selecting a shirt!!) Really, it's cruel to have to get a picture that lasts for 4 years!! I didn't smile, which I thought was important, but I guess I watched too many American movies!!

Naptime today was much the same as Monday, mainly because I was so tired!! I'm sleeping well at night still, but wake up with a headache. Can't have everything I suppose!

Weekend Update

After working Saturday morning Scott was able to spend the rest of the weekend with Emma and I which was great. I even got a little nap on Saturday afternoon!!

On Sunday the weather cleared up in the afternoon for a few hours so we headed over to the park again. This time Emma tried a few more of the fun things to do. I was really surprised that she was so brave, but it was great.

Swings (again)

See-Saw

Roundabout



Slide

After dinner I put Emma into her pajamas, which she knows mean bedtime is coming, and she got pretty upset. I brought her downstairs as planned and sat with her in the rocker, to try and wind her down. She was fast asleep by 7.30pm and as you can see here didn't even notice when I put her down for a minute...

I put her to bed once I was sure she was out cold and she did not even rouse by the time we went to bed! I heard her cry once or twice in the night, but not for long and she woke up just before 6am. Not a bad nights sleep really, and she's in a good mood today!

Beverly was her nurse last night and I don't think Emma likes her. She is always crying in the morning whereas when Dorothy has her she is always sleeping when she leaves, and seems to sleep better. I'm not hugely fond of Beverly, although I'm sure she's very nice really, I just feel like she's very critical.

For example, I believe babies need to learn how to soothe themselves to sleep and can be left to cry it out, however how can you do that if during the night the child has a nurse who intervenes at any movement or noise (as they should to keep the CPAP in place and keep her sleeping). I don't quite know how to explain to Emma that during the day she has to do it herself, but not at night, and apparently she's confused too!

I appreciate her constructive advice, but I don't think she has thought through how her very presence makes my day job harder!!

Anyway, it's a good start to the week, and an answer to prayer. It's encouraging.

My personal goal this week is to stop pumping completely. I'm down to once a day, but I've had a headache since I cut out the second pump and some aches, so it makes me nervous about mastitis!

Park Life

this is day 3 of the sleep saga and I decided to stick with the cruel...kind approach! This morning I put Emma down for a nap at 9am, changed a dirty diaper at 9.30am and got her up at 10am. No, she didn't sleep, but the crying did slow at times! I figure even if she didn't sleep she'd get the message a bit quicker about naptimes!

Grandma Ellen came to play for a couple of hours and Mummy (me!) took a nap!

After my naptime and Emma's lunch we took a stroll around the block. The weather is very mild today so it was perfect for some fresh air therapy!

On the next street over there is a park that I have never taken Emma too so I thought we could check it out for a few minutes. It is great.

They have the usual park things, but the also have baby swings which I could not wait to try Emma in. She loved it!

When we got home I took a bit more time over putting her down for a nap and rocked her to almost asleep before laying her down. So far she's been asleep for 15 minutes!! Result!!

I guess I am learning perseverance!! I also woke up this morning much calmer. I realized that I need to trust myself to do what's right for us all and trust God to take care of the rest. After all, no matter how many PhD or Masters in medicine or child development can teach you how to love your child. And that is the most important thing because everything else flows out of that love. I may not always be right, but I'll always try my best.

Hope-less?

I am a goal-oriented person. That means I tend to assign goals to all the different aspects of my life and strive to achieve them. It is both a blessing and a curse. To others you look like someone who knows how to get what they want, and to get things done, which is often true. On the other hand it is difficult to know when to stop and smell the roses, so to speak. It is also very hard to swallow when a goal is not met or turns out to be immeasurable!

Having worked in sales for many years, with a financial goal to meet, and even personal goals like owning a home or being able to take a vacation, go out for dinner etc, have all perpetuated this goal drive.

So when it comes to one of my most important roles, Emma's mum, it stands to reason I would assign goals, and anticipated results, to my effort. And there are many!! Goals for feeding, strength, cognition, language, overall health, growth, personality, faith and happiness.

You would be wise to point out that many if not all of these goals are only partially effected by my actions! And that is not to say that my actions are not important, after all at this time I am the most significant person in Emma's life. I care for Emma 16 hours of the day (and if not sleeping, worrying for the others!). It is my responsibility to encourage developmental activities, provide nourishment and monitor her health.

What I think is frustrating me the most at this stage it that there are so many people weighing in with instructions on how to tend to Emma's needs in their specialist area, yet the sheer number of things is overwhelming and they are not all complimentary! I remember before Emma was born, or even diagnosed in utero, wondering how to best handle all the friendly advice you are expecting from well-meaning family and friends. Pah - if that was all!! Now it is a case of which Dr. or specialist takes priority!!

Even then, their best advice may not be right for Emma! Take her feeds. She seems to do okay, but the increased volume makes her fall asleep after the feed, only to wake up in a few minutes with gas! And feeling refreshed enough to not sleep longer!!

And all the experts in the world (or at least my world) probably can't tell me why on earth she will not go to sleep in her crib for me. (I'm leaning towards a separation anxiety theory right now.)

So really, my priority right now is to simply get through these days (weeks, months) of sleeplessness with as little trauma as possible. If it comes down to it, I may have to have her nap with me, because if I don't get some extra sleep ain't no-one gonna be happy!!

I know some of you are desperately urging me to look to God for strength in this time. And you'd be right that I have not been looking in the right place, aside from the desperate plea of "please help me" as the straw breaks the camels back. Perhaps this is why I'm sharing the struggle with you, because I needed to admit that I've been trying to do it all by myself, when that really is unnecessary if not plain crazy.

So this is my public surrender, a declaration that I have come to the end of myself and am found lacking. I can only pray (and will) that the Lord renews my mind, body and spirit so that I can handle what is to come and only take responsibility for that which is mine to take.

I'll keep you posted!

Perseverance must finish its work so that you may be mature and complete, not lacking anything.

James 1: 4

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Example: This morning Emma's awake and screaming, so I get up when the nurse is due to leave (despite very little sleep last night) and say that I'm giving in and bringing her on with me. The nurse proceeds to tell me that if Emma gets her way she will know that she can get her way and will go through life like that.

Wow, it hurts to be judged so early in the morning! And I felt the need to stand there and defend my decision to take care of myself and Emma by just getting us some sleep. By which time she was awake and I feel like a terrible mum and just bring her downstairs.

I wonder what it would be like to be able to make good decisions.

Same old...

Do you ever have one of those days at work where, even though you do enjoy your job, you wonder if you made the right career move or if there's something you're lacking? Well, I'm having one of those weeks!

I have no regrets about being a mum and I don't wish to return to an office (yet!), but I am having one of those days, well weeks actually. It's like I know in my head the stuff I'm supposed to do, for the most part, but it just doesn't seem to be working. I'm trying so hard to do it right.

Take the sleep issue for example. Emma did sleep yesterday afternoon for all of 30 minutes! Last night Scott put her to bed, awake and she did not make a peep! This morning I tried to have her take a nap. After 45 minutes of screaming, and my own frustration at extreme fatigue (they are tag-teaming me, these children!) I gave up. Thankfully I was off to get a haircut (an unrelated new source of frustration!).

When I came home tried to be more interactive, playing with Emma for a while before we tried nap time again. She fell asleep for 20 minutes in her chair during lunch and I left her hoping she would stay out. No. At 2pm I took her upstairs and she started to cling as she realized what was happening!

I left her in there screaming and busied myself. After about 20 minutes the cries were short and sporadic. After they'd stopped I took a peek...




It's really quite strange, and I didn't feel right just leaving her there. What if she cut off the circulation to her brain, or fell back and hit her head? I went and laid her down, which of course woke her up and she's been crying ever since.

It may take quite a few days of this routine for her to get it, but I am worried. She lost weight last week and the lack of sleep will only contribute more to that.

Te elation at yesterdays progress was short lived as I feel like we're moving backwards with things. I still don't know how to prioritize our time and constantly feel like whatever I should be doing I'm not. I wish I knew where I'd gone wrong.

Bedtime Battles

This morning I spoke to my Grandma online and she told me about a conversation her brother had had with a woman feeding her daughter by G-tube. He asked the woman about oral feedings and she said they had started feeding their little girl drinks. She doesn't have Moebius, but likely a cleft pallate.

When Emma's speech therapist came today I relayed the story and suggested we try Emma with some water. We're pretty sure she won't aspirate liquids, so why not. She agreed and we gave Emma some water in a cup.

She really seemed to enjoy it and was handling it very well. It was so exciting.

Later on though she was resisting nap time again. This time I decided to take her head on! I let her cry it out and kept laying her back down. I didn't know what to do an hour into it because I couldn't give in at that point!

I made sure she was okay and let her cry it out. When she stopped crying I could not resist checking on her. She was asleep alright, I just wasn't prepared for the unusual position...

We'll likely go through the whole thing again tomorrow!!