31 May 2011

Joy comes in the mourning

I have a friend whose son died last month after a seizure. Only 12 days before he would have turned 20 years old. So young. It was unexpected, a total, complete surprise. It was nothing they could have prepared for.

My friend lives in my old hometown and I had been praying that I would get a chance to see her when we went back there recently. I just wanted to give her a hug, for me or for her, I don't know. I just wanted to tell her in person how sorry I was.

I had been standing in the lobby of our old church talking with friends, waiting for the right moment to go into the church as it had already begun, when she walked out of the bathroom right in front of me. I looked at her, she looked at me and then we just hugged. We quietly cried in each others embrace and just let the tears flow. No words were needed. Just two mothers sharing tears of sadness over our losses, over each others losses. Two mothers whose arms ache to hug the ones we miss. Two mothers joined by a situation different, yet the same; we've lost a child too soon. She has memories to fall back on and miss the son she shared them with. I have no memories of times spent and miss the opportunities I should have had.

My friend had a large bundle of tissues at the ready in her purse. We dabbed at our tears and she asked me when it gets better.

I don't know.

I told her it does get easier.

It gets easier, but it never gets 'better'. You are never better than you were before. The loss of your child is forever with you. The slightest thought at the most random times can ignite a tidal wave of emotions that spill the tears when you least expect it. Just when you think you've shed your last tear, that you have gained the strength to move on without being emotional over the smallest thing, you are reminded through someone else's loss and yours become fresh and new again.

But we do have joy in these times.

Through our faith in Christ.

We know that God already knew how things were to be.

Psalm 139:16 All the days ordained for me were written in your book before one of them came to be.

I don't know how people who have no hope in Christ get through it. What a dismal, depressing thought that the only moments we ever have are here on earth and once you die it's all over. There is no point, no future, no hope without Christ.

It does make our sorrow easier to know that we will see them again. And while we have to learn to live this earthly life without them, we can have peace knowing our loss is heaven's gain and someday we will see them again.

How good was God to give me the opportunity I had asked for. I could have easily missed seeing her but He brought us face to face. So I could give her a hug.

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25 May 2011

Following through

After my trip back to California, I really have set my mind to try and think differently.

I want to be more open to saying yes to the kids. I don't want to make excuses all the time. And I don't want to let life pass by because I was too bothered about the details, the time, and the nosey lookie loos when it comes to Liam.

So, I let Aidan play hookey from school Monday and we all went to the beach.

You have to remember that Liam is a kid that can't move his body. He is total care. So, taking him to the beach  means packing up a chair for him to sit in (not just a fold up chair, we're talking a full support chair), using his stroller to get him there (which is NOT beach friendly and doesn't move through sand), taking a tent, g-tube food, etc... It's an ordeal.  But it was so worth it!

We had such a great time.

The best part? The kids had such a great time. Even Liam. He loved watching the ocean flow in and out around his feet. He giggled and giggled until I thought he was going to throw up.  Which is a great thing. It means he's happy.

Sorry for the candid shot there Mimi!

Skim boarding.

Big kids getting to act like little kids.

I will say that I am very thankful to have the handicap parking sticker on days like that because I am able to park right at the entrance to the walkway to the beach. That makes having to lug all of our stuff a bit easier since we didn't have to park in the normal spots that are a block away. And I can put Liam in the stroller* and wheel him out the boardwalk almost to the beach.

I learned a lot from the trip. It was our first real attempt to take Liam to the beach and I found out that it wasn't as big of a nuisance as I though it would be. And Liam didn't mind it one bit.

And I should say yes more often.

*I found out that it's much easier to pull the stroller backwards through the sand than to push it forwards. =) 

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20 May 2011

I've been away!

I got to do something recently that hasn't happened before...

I got a real vacation!

Shawn and I have been able to go away one time since Liam was born for a two night stay in the mountains with friends.

This time it was for 7 nights.

Oh em gee!

No seriously,  this was a once in a lifetime chance to go.  Shawn had a business trip to southern California, where we used to live. Shawn was taking Rylie because her bestest friend in the whole world lives there and she's flown out here to see Rylie several times. Now it was Rylie's turn. Because we were using Shawn's frequent flyer miles there were only certain days and times available, which meant that they were getting to go for 7 nights with the majority of time spent in our old hometown. Which meant I really wanted to go too.

Our old hometown. Our old friends. Trip paid for by work... When would this opportunity come up again?  So, I was able to tag along on the work trip and have a real vacation for the first time ever.

It was weird to wake up and not be a mom for the day. Rylie was with Sabrina the entire time. So, it was just Shawn and I. I had to get out of mom mode first before I was able to start enjoying the vacation. I woke up the first day and didn't know what to do with myself. It was weird to have no kids and no responsibilities. Shawn was at work, Rylie was 3 hours away. Our other kids were at home with Mimi. But once I figured it out, we had the greatest time.

In front of Tijuana on the American side.

Lindstroms and Savards

Gregasaurus and his wife Terria

Me and Jackie. She's 82 years young.

Dawn, Me, Melissa, and Tiffany
We were able to see old friends, our old church and neighborhoods, and flashback to all of our fond memories of living in the area.

It was fun to remember what things used to be like. We have such great memories of CA from when the kids were little, before Liam was born (he was born after we moved here to NC). We used to go hiking, biking, to the beach, etc... all the time. It just isn't easy to do anymore.  I miss having the carefree days, of just being able to get up and go, to plan spontaneous trips. But when I think to those days, there is no Liam in them. And so while I thoroughly enjoyed my trip and walk down memory lane, I came home with happiness in my heart for knowing Liam and the joys he has brought to our family, even with all the struggles.

It is futile to look back on how our life used to be. I do miss a lot of it. How could I not? Our lives are drastically different today. But one of the best things about this trip was the realization that I have to make the best of what I've been given while I can. The big kids get the shaft a lot because it's just easier to not do things (go to the beach, go biking, etc...) when I consider taking Liam along. While that isn't fair, it's just the truth. So, I want to make an effort to not let Liam's disabilities get in the way any more than absolutely necessary.

I wasn't sure what to expect coming out of a trip that long visiting a place in time that held such fond memories for our family. While some of us would go back there in a heartbeat, I am perfectly content right here where I am.`

Some of the most beautiful scenery on Earth

Rylie and Sabrina

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09 May 2011

Got reset

Knowing Liam could go vomit free for months on end and having him back to doing it again everyday has been a nightmare. He's been throwing up everyday since we upped his volume intake for formula. Trying to get Liam to the right amount of calories has been causing him to throw some of them back in my face. What good is it to increase intake only to have the increase coming back out? Granted, more is staying in than out, but it's just been a pain having to shampoo the carpets weekly from all of the mess, not to mention the damage it does to his body, teeth and throat from it all.

When Liam got sick over 3 weeks ago he wasn't holding much down for days on end. His tummy quick working and so did his guts. It took him a week to get over it and once he was back to feeling well, I slowly started to increase his food to get back to his normal volume. I was excited to see that not only was he keeping everything down, he was able to take bolus feeds again like he did before we upped the food last fall. Cautiously I have been increasing his food and have been thrilled to see his body keeping everything down!  He is just like he used to be last year! 

I  don't know the hows and whys of it but I'm thankful he got that virus. Being sick reset my kid!

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04 May 2011

The homestead cavalry

What my living room looks like when we have the entire cavalry here working together and working on language:

PT is holding Liam, OT and SLP are in front and the preschool teacher is in back.

We are really working on getting Liam to learn to use his hands to talk. Because his range of motion and motor skills are so impacted we are just starting out with a picture of him playing with something and a blank card in order to 1) make sure he hits the right card 2) make sure he knows which card to hit 3) the card serves as his voice, he gets to do what is on the card when he hits it.

Liam did really well with it yesterday. He would hit the right card and then get to play with the toy. Our SLP is tough though. She would take it away after a few moments and he'd have to hit the card to get it back. It's a process to teach kids like Liam that they have a voice, and one that takes a lot of brainstorming and trial and error. We also use the ipad, but this is one way to know for sure that he is hitting the right picture and not doing it by accident.

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01 May 2011

Frowning around

This is what happens when Liam is being emotional and we sing the night-night song in the middle of the day.

  *I love Liam, I love Liam,
Yes I do. Yes I do.
You're my little baby.
You're my little baby.
Yes you are. Yes you are.
-Sung to the tune of  Frère Jacques 

He is the only one of my kids who can make a true frown like that. Unfortunately for him, when we see it, it makes us laugh and we sadistically keep it up for a while because we just can't help it.

Oh, don't judge.

It's just too darn cute! =D

*I have sung this song to Liam since he was in the NICU. We used to sing it to him to calm him when he was upset and it evolved into his bedtime song. We can sing it at other times of the day and he smiles and loves it, but when he's emotional, well, it just makes him very sad. =)

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