Monday, August 31, 2009

Sweet Marie

How is it, that people that you have never even met can touch your life so immensely?! I have been blessed, in so many ways, to have gotten close to a family, and yet I have never even met them in person. Shan has been such a support to me with Gavin. She has sent me ideas and great tools to use for him. She has left encouraging messages. And, I have read her blog and been filled with hope, smiles and encouragement. All of this was given to me because of her sweet Marie.

Shan once wrote, "Couldn't you just roll her in sugar and eat her with a spoon?" and I couldn't agree more!

Lastnight I came to their blog and read something that just broke my heart! Marie has lost her battle with Leigh's disease. She went to be with the Lord on Friday morning. I am so devastated for this precious family! I can't even begin to imagine the pain and emotions that they are feeling!

The emotions of losing a child don't even begin to explain it all though. Just one day before Marie was sleeping with her earthly Daddy and went to be with her Heavenly Father, Shan gave birth to their third daughter. Shan delivered their daughter, Sarah Kate, and the next morning Marie was gone. Can you even begin to imagine the emotions that this family is going through right now?! The extreme joy of welcoming a new little one and then immediately having to say goodbye to another of God's gifts to them!

I am so heart broken for this wonderful family and yet, I know that God had and has a great purpose in Marie's life! I also know that He will sustain this family with the peace that only He can provide. It is all way too much for my human mind to grasp, but I do know that there is a reason and that God will see my sweet friend through.

Please be in prayer for Shannon, Luke, Josie and Sarah Kate! May God give them strength, peace and hope, today and always! Shan, I'm thinking of you, crying with you and praying for you often! Love, Hugs and Prayers sweet friend!

"The Lord gave, and the Lord has taken away; Blessed be the name of the Lord." Job 1:21

Thursday, August 27, 2009

Responsibility, Fears and Uncertainty

Life can be filled with so much uncertainty. Sometimes I wish that I could just turn my brain off, for a time of rest! I'm not a big worrier, because I try my hardest to put my fears in God's hands, but I do tend to analyze things A LOT! And, sometimes this causes me to think of the many "what if's."

Since having Gavin in my life I have actually felt more free in many ways. I am able to let the small things just go, more than I used to be able to anyway. I don't worry about as many things as I used to. I realize that there are so many more important things in life, besides the little things that used to bring me down. I've realized that there are MANY things that you just can't control and that I shouldn't waste my time even trying! This includes; Complex relationships (I can't change them, so why invest so many emotions into them?), My children (how they are dressed and some behaviors that they exhibit.....I now try to pick my battles better than I used to, because some things really JUST DON'T MATTER!), How things look, etc. What I'm trying to say is that there are so many more important things to focus on!

On the other hand, having Gavin has also brought about more thinking and more worries. I feel like I need to be so responsible with this gift that was given to me! He is fragile in so many ways and it's up to me to make sure all of his needs are met! Things don't just get swept under the rug with him. I can't decide that if I'm tired or not feeling well at night, to just go to sleep and think to myself that "I'll just do it tomorrow." EVERY night there are things that HAVE to get done! There are medications to make up. There is his food to mix up. There are breathing treatments to give him.....Etc. I don't get to decide when to do these things....there is a strict schedule and they need to be done! With our other children, things could always be put off, if needed, for another time or day.....This is definitely not the case with Gavin!

As for relationships, some may not be such a worry for me anymore, but there are others that are SO MUCH MORE important to me! My relationship with my children is more important to me. I have a very strong desire to give them all that I can and to make sure that their lives are not over-burdened by having a special needs brother. I want to make sure that they are doing well and having lots of fun too, because life is definitely not easy on them, having a brother who requires so much more than the average brother does.

My relationship with Joel is more important to me too. Being married is a job in itself, but when you add the added stress of having a child with special needs, it is so much more complex! I am hopefully more loving in some ways towards him, but I also don't let things just slide either. I can't! Our relationship is already put into the strained category just with the stress of having to care for a special little guy and all the extra work and worries that come with him. I am always looking for ways to improve our relationship and I put a HUGE focus on communication now. (Let me tell you, this is a full-time job in itself!) But, I know that it is also SO VERY IMPORTANT!

Little things that never would have crossed my mind before, now just pop into my head. Since Gavin is so fragile, sometimes I wonder how long he has to live. I was at a store this week and I was looking at clothing in his size and sizes that he will fit into next. I suddenly had the thought that I shouldn't buy him anything in the next size because he may never get the chance to wear them. What a morbid thought, huh?! But, I've had these thoughts about him before. I have never had such thoughts about my other children and God only knows how long they will be on this earth as well. I guess it's because Gavin HAS fought to just stay alive so many times and because he still has a heart defect and is so fragile, but I don't like having to think this way!

I am fearful of the flu season coming and having him get sick again. I've heard that the swine flu will affect 50% of the population and that they expect 90,000 people to die from it! This is not something a Mom, who has a fragile child, wants to hear! Should I even send Gavin to school this year? (I say send lightly, because like my cousin's husband said to me, "When do you and Gavin start school?" Even he knows that I won't actually be leaving him at school by himself for awhile! I'm going to be starting school again right along with him!) But, seriously, is this a good time to put Gavin in a compromised situation?

Also, traveling with Gavin is never easy. We have to pack so much more than we used to! There are so many things that we have to take along with us for him! This weekend we are traveling the farthest we ever have, with Gavin. This kind of scares me. We are going to visit my Dad, Step-Mom and Sister, who live about 8 hours from our home. Gavin has never been to their home, because he has never been as stable as he is now, and I was fearful of traveling that far with him. Now that I am planning for this trip, I am allowing these fears to pop up into my head. Should we travel this far away from his doctors and the hospital that has all of his records? What if he becomes sick? What if he needs to be hospitalized? Should I pack his O2 monitor and some oxygen, just in case? He has been doing so well lately, but I still wonder about these things! UGH!

So, these are the thoughts floating through my head each day, and especially lately. Lots to think about......but lots to be thankful for too!

Somedays I wonder how I stay so sane? But, I actually know the answer to that one.....By God's Wonderful Grace!

"The Lord is my light and my salvation; Whom shall I fear? The Lord is the strength of my life; Of whom shall I be afraid?" Psalm 27:1

Monday, August 24, 2009

Good Morning!

Aren't I blessed to be able to wake up to these crazy boys each morning?!

Although, this little stinker had me up way too early!!! But, at least he woke up happy and put a smile on my face!

We have two more weeks of summer vacation here. I am dreading sending my boys off to school again! I'm trying not to focus on that day, but instead plan on packing these weeks with lots of fun, while we still have the chance!

Good Morning to you! Hope you have a wonderful day!

"As for me, I will call upon God, and the Lord shall save me. Evening and morning and at noon I will pray, and cry aloud, and He shall hear my voice." Psalm 55:16-17

Friday, August 21, 2009

One of those days!

This morning I woke up to this beautiful sunrise! I was filled with so much hope and excitement for the day!

Unfortunately, that's where my hope and excitement ended. Ever since then, I've been in a funk. I feel Blah.....and I think that Gavin does too.

I have so much to do: laundry, pay bills, mop floors, plan and make decisions.....

But, I just don't feel like it!

I think it's because it's a rainy day today. Plus, I'm dreading the start of school soon and all that comes with it.

Since it's raining off and on today, it's a Lego day at our house.

It's fun to see the creations that boys come up with and it's fun to see them play together. But, days like this also come with lots of; "Hey, I was going to use that piece!...Mom, He's not sharing!...Why do we always have to do it your way?!...I'm bored!...Give that to me!"

Do you ever have days like this? Days where you feel restless, tired and just have no gumption to do all that you need to do?

I just read some quotes that popped up when I googled "Funny Sayings." On days like this, I look for something funny to brighten my mood. Here are a few that made me laugh, especially since they hit close to home!

"A compromise is an agreement whereby both parties get what neither of them wanted."

"I don’t suffer from insanity. I enjoy every minute of it."

"I’m not insensitive, I just don’t care."

"Hey, the way I figure it is this: if the kids are still alive by the time my husband comes home, I've done my job."

"I try to take one day at a time, but sometimes several days attack me at once."

I read a lot more funny ones too! Now I think that I have enough laugh power to at least mop the floor!

And, the sun is starting to come out! :) YAY!

I hope all of you have a great weekend! HUGS!

"This is the day the Lord has made; We will rejoice and be glad in it." Psalm 118:24

Wednesday, August 19, 2009

Gavin is happy about some news that we got today!

Gavin was supposed to go in tomorrow for an EEG. You may remember that Gavin had started to have some abnormal movements about a month ago and we weren't sure if they were seizures starting up again or not. So, his neurologist wanted an EEG done to see if there was seizure activity showing up. Just so you know, Gavin and I greatly dislike having to have EEG's done! They are not convenient! They are messy! They make Gavin sad and mad! They make me sad. We have to stay up for part of the night, the night before having one done, so that Gavin will hopefully fall asleep during the test and this makes both of us grumpy! Needless to say, EEG's are not fun!

Anyway, thankfully I was able to give Gavin some great news today!

"Gavin, Momma has some news for you."

"Since you haven't had anymore movements or visible seizures in the last couple of weeks, the neurologist says that we can cancel your EEG for tomorrow!"

Gavin says, "This makes me so happy!"

"Really Momma?! I can't believe this!"

"I'm so excited that I could get up and dance!"

Gavin and I had a great day! YAY! Praise God!

Speaking of God.....We were supposed to have had this EEG a couple of weeks ago, but it didn't work out, so it was scheduled for tomorrow instead. God's timing is always best! He knew that Gavin's seizures were going to stop and because we had to wait to get scheduled for the EEG, we have been spared from having to go through it all together! Thank You God!

Now.....I pray that these seizures will just STAY AWAY!!!

"We give thanks to You, O God, we give thanks! For Your wondrous works declare that Your name is near." Psalm 75:1

Monday, August 17, 2009

Guess what Gavin did this weekend?

Here are a couple of hints:

Any guesses?????

Gavin and our family went camping!

Camping isn't really my thing and I wasn't so sure that it would be Gavin's thing either, but since my mom rented this cabin for us to stay in, we decided to give it a try.

And, we are so glad that we did! We had a great time! We got to see many of our family members that we don't get to see very often. We roasted marshmallows. We made campfires. We even threw tomahawks!


Gavin went swimming!!!

He wasn't so sure about it at first. As you may know, Gavin hates water!

He even fell asleep in my arms to escape from what we were doing to him! He does this sometimes. He just checks out when he is not happy about something, I guess to get away from it all.

But when he woke up he was quite happy and even started to enjoy the water! This is HUGE for Gavin! I hope this fondness of water continues! Bathtime would be so much easier if it did!

Nolan and Caleb swam so much that we were sure that they would turn into fish!

Jacob was off hanging out with my cousins' children, so this was the only picture that I got of him. But, he said that he had lots of fun.

I think that Gavin had a wonderful time too!

Shockingly, I can say that we can't wait to take him camping again!

"I will plant in the wilderness the cedar and acacia tree; I will set in the desert the cypress tree and the pine and the box tree together. That they may see and know, that the hand of the Lord has done this, and the Holy One of Israel has created it." Isaiah 41:19-20

Wednesday, August 12, 2009

Big, Little

We have a ton of nicknames for Gavin. I call him by quite a few different names throughout the day and I'm sure that he is somewhat confused about what his name actually is! One of the names that I call him is, "Littles." He is small for his age and such a cutie, so I think that it fits him well. Joel says that Gavin doesn't appreciate being called little, so he calls him, "Big, Little." This name is probably more appropriate for Gavin, especially taking into account the following pictures in this post.

A good friend of ours recently gave Gavin a gift. She thought that it would be good for him and that he would enjoy it. I had my doubts about this, but am thankful to have been proven wrong. She bought him a walker. It's kind of like those 'old-fashioned' kind that actually allowed your baby to 'walk' around in it. Most of them today are called exersaucers, but they are stationary, so I'm not sure why they are named this?! She was able to find one that actually allows your baby to 'walk' around in it. She is determined that Gavin will do more someday and I pray that she is right about this. But, even if he isn't able to, she has made it possible for him to 'walk' as well as he possibly can.

Here he is trying it out!

He really seems to like it!

He has a hard time keeping his head up and under control, but this is probably a great way for him to practice head control and build some neck muscles!

I think he looks adorable sitting in it and it's so nice to see him sitting up a little more on his own! He is even moving the walker around a little bit, by pushing off the floor with his feet! He looks so proud of himself and he should be proud! I'm awfully proud of him for doing so well in it!

"AWW Shucks Momma! It's really no big deal!"

Thanks Cindy! We appreciate your thoughtfullness and are having fun with your gift to Gavin! Love ya!

"Assuredly, I say to you, unless you are converted and become as little children, you will by no means enter the kingdom of heaven. Therefore whoever humbles himself as this little child is the greatest in the kingdom of heaven. Whoever receives one little child like this in My name receives Me." Matthew 18:3-5

Monday, August 10, 2009

Great Idea!

I wanted to share with you a great idea that a blogger friend of mine, Shan, came up with. She was inspired to make it for her daughter, Marie. She sent this new tool to us a couple of weeks ago and it has been such a blessing to Gavin and I!

Since Gavin is not able to sit up on his own, it is difficult to find places to 'put' him when he is not being held. I don't like to have him always laying flat on his back. And even when I put him in his stroller or seat he leans to the side a lot of the time. I used to roll up a blanket to place on his right side to prevent him from leaning so much. Now I have this wonderful invention to use instead!

Here are some pictures of it:

The first one is of the inner part. It's just a sturdy piece of foam, cut into a long rectangular cubed shape. (I don't know what kind of foam. She said it's what they use to make seats for a tractor.)

Then she sews a fabric covering that is open on one end to put the foam piece into.

Then, she puts the fabric covering on it. The covering is great because then you can wash it when needed! Plus, you can make different covers to change things up a bit, if you want to.

Here is a picture of it when it is finished.

And, here are some pictures of Gavin using them in his seat.

As you can see, Gavin leans to the right, (Joel is very proud of this by the way! Just a little joke, don't take it too seriously!) and the foam pieces help to keep him sit more upright.

Isn't Shan brilliant?! She says they are very inexpensive to make too! Thanks again Shan!

Having a special needs child, you are always looking for ways to make things easier and more comfortable for your child. I've come up with a few good ideas, but a majority of the ideas that have benefited Gavin and I, have come from other special Mommies. I am so thankful for the support of these Mommies and I don't know what I'd do without them! So, Thanks to all you fantastic Mommas out there! God has blessed me with all of you!

"The blessing of the Lord makes one rich, and He adds no sorrow with it." Proverbs 10:22

Friday, August 7, 2009

You'll probably think that I'm crazy......

and maybe I really am, but I really don't feel like our family is quite complete yet. Before Joel and I were married we talked about hoping to have 3-4 children. We have obviously met this goal and feel very blessed that we were able to have our children, but I don't feel complete accomplishment yet. I don't know if it's because I love children so much, or if it's because I haven't gotten my girl yet, or if I just have more love to give, or if I ACTUALLY AM CRAZY?!

Whatever the reason is, I would love to have more children! There is one problem with this desire though. I DO NOT want to be pregnant again! With each one of my pregnancies I got more sick and when I was pregnant with Gavin I had no energy and felt sick the ENTIRE time. I don't want to live through that again, plus I don't feel like I would have the energy to care for Gavin and our other children if I did feel that rotten again. I know that God would provide me with the strength, as He always does, but I don't have that desire to be pregnant again. So, what do I do?

Last night we were all sitting at the dinner table and Nolan said, "I feel like someone is missing." Our whole family was there, but he didn't feel like it was. I have this feeling a lot. I feel like I have lots more love to give and someone isn't here yet to receive that love.

The other day I asked the boys if they wanted to have another brother or sister. They all said, "Not really." I asked if they would like to adopt a sister. They said, "Not really." Then I asked them if they would like to adopt a sister who has Down syndrome. They all yelled out, "YES!" Their reaction completely surprised me!

I guess that I shouldn't be that surprised, because they all love Gavin to death, and yet, they don't feel that way about each other most of the time. There is just something about Gavin though. You can't help but be drawn to him, if you take the chance to get to know him. I think all people with Down syndrome are this way. They bring so much happiness to this world! They are so innocent and loveable and honest!

Our neighbors have a grandson that has Down syndrome. They were such a comfort to us after Gavin was born. They showed us what a blessing it would be to have a child with Down syndrome. Their grandson comes over at least once a week and our boys LOVE to play with him! They come home so happy and filled with stories of what he said and did. This may attribute to them wanting to adopt a sister with Down syndrome?

Here is a picture of some of our boys playing with our neighbor's grandson and his brothers. They see no difference playing with him, they only feel the joy that comes with playing with him.

Don't they look precious playing together?! This picture makes me feel so happy!

But, I think that it would make me even happier if there was a little girl with Down syndrome in that picture. Seriously, I need a girly girl to watch playing in that back yard! Our yard is always full of males, males that I love, but don't you think a girl would make that picture more complete?

And, I feel that it couldn't be just any girl either. I have a strong desire for that girl to have Down syndrome. And, obviously our boys do too! I love that they see the good in those with Down syndrome and I love that they want this to be part of their lives!

There have been so many times that I worried about our other boys since Gavin came along. Were they upset about having this "different" person in their lives? Did they feel less cared for because of all that care that Gavin has required? Their love for their brother is such a gift to me! In fact, when I asked them if they ever felt embarassed about having a brother who was "different", they said, "Why would we feel this way?!" I explained to them that some children might have feelings of resentment or have feelings of not fitting in because of having a brother like Gavin. They thought that this was crazy! They all said that Gavin was such a blessing to them and that they could never feel this way about him! God has truly blessed me with thoughtful and loving children! They may act like they hate each other sometimes, but they are all very sensitive and loving individuals and I am so thankful for all of them!

I just wish that I could add one more to the mix.....maybe some day we'll have a little girl with Down syndrome to add to this precious bunch?!

Go ahead, tell me I'm crazy! I just can't help the way that I feel.

You may be wondering how Joel feels about all of this? He says that he would desire to have more children as well, but he's not so sure about adoption yet. He's thinking about it. I think that a little girl in this house would be really good for him too! And, I have a feeling he would make a great daddy to 5!

"Behold, children are a heritage from the Lord. The fruit of the womb is a reward." Psalm 127:3

A little update:

I just have to add that right after I clicked "publish post" to finish this entry, up popped an advertisement saying, "When is your baby due?"


Right after that I checked our e-mails. There was one from our local Down syndrome group. It was a weekly update that they send out to us. On it were 2 girls with Down syndrome who were waiting to be adopted! The heading said, "Do you feel like you are missing a member of your family?" And, there was a picture of 2 beautiful girls with Down syndrome!

Am I reading too much into this or what??!!

Thursday, August 6, 2009

Travels to Germany, the North Pole and Africa!

We've been MIA the last few days. Joel took a few days off from work and we traveled to Germany, the North Pole and Africa in 3 days flat! Well, sort of, we just pretended we were there since it kind of felt like it! We went on a mini-vacation! We made a trip to a town, a couple of hours from us, that was founded by German immigrants. The town still has a Bavarian feel to it and is very quaint. We had lots of fun!

We took a ride on a ferryboat down a river.

Nolan, Caleb and Gavin pretended to pilot the boat, wearing captain hats.

And, Gavin really seemed to enjoy his time away from home! He's not a big fan of traveling, but I think he's getting a little used to it!

Next we went to a zoo, about an hour from our house. It was here that we pretended that we were in Africa, since we saw lots of cool animals that would normally live there!

And, again, Gavin seemed to really enjoy himself! He was such a good boy and seemed to have lots of fun along with the rest of us!

We also visited the biggest Christmas store in the world! Unfortunately for me, but thankfully for you (because now you won't have to be bored with anymore pictures of our trip!), I forgot to bring our camera charger along with us and the camera battery died, so I didn't get any pictures there! :(

We had a wonderful and relaxing time! (Well, as relaxing as it can be with Caleb, the boy that can't sit still for 1 second, even when he's sleeping, kind of child!.....Seriously, he has become quite the high strung child over the summer! I pray that he just needs the stimulation and consistency of school to calm him down! Otherwise we and his teacher are in for quite the school year ahead!) We came back rested, having enjoyed our time away together, but I am happy to be back home again too!

"There remains therefore a rest for the people of God. For he who has entered His rest has himself also ceased from his works as God did from His" Hebrews 4:9-10