Monday, June 29, 2009

I've told you before, I don't like water, thank you very much!

I think that I may have mentioned it before, but Gavin does NOT like to be near or in water! He is a very easy-going boy, but if you give him a out! He has a fit and doesn't forgive you for about 30 minutes afterwards! He sometimes even starts to cry or complain if I am holding him and I just turn on the sink! Just the sound of water sets him off!

This makes bathtime so difficult at our house! I feel so bad for him and I get quite the workout trying to control him while also washing him up. It is not fun and he and I both dread bathtime!

My goal for the summer is to get him to tolerate water a little better. I'm hoping that he will even like it someday, but for now I'm just hoping for him to tolerate it. I plan on getting him wet a lot this summer! SHH, don't tell Gavin!

The other day it was about 97 degrees out, so I filled up his little pool and let the water warm up some. Then, I started by putting his feet in the pool.

Surprisingly, he tolerated this very well! Maybe because it was SO HOT out!!!

Next, I took off his clothes and sat him in the pool with his diaper on. He even tolerated this fairly well!

Since he was doing so well with the water thing, I decided to give him his bath in the pool!

I guess that I pushed my luck! But, he did do better in his pool than he does in the sink or bathtub!

I can only remember one time that Gavin ever liked being in water. We were staying at a hotel with a lukewarm hot tub, so I took him in with me. He didn't cry at all. So, I'm thinking that he might do better if he is being held in water??? We just bought a pool from the bargain corner. (Well, actually the guy was willing to give it to us for free, if we took it down! This is a huge job and Joel is NOT thrilled about it, but I told him, "It's for Gavin!" :) Plus, the boys and I will love it too! We just need to figure out how to install it at our house and buy a new liner for it!) Anyway, I am hoping that once we get it up and the water warms up a little, that Gavin will get used to the idea of water and hopefully like it while being held by me.

I've been told that children with Down syndrome usually love water and swimming. I guess Gavin didn't get to read that memo! Oh well, I'm not giving up! Hopefully by the end of the summer I'll be updating you on how much he loves to be in the pool.....I am surely not going to hold my breath though!

Do any of you have ideas on how to get a boy with such a waterphobia to like it? Please let me know if you do! Because, pretty soon I might just give up bathing Gavin! Between his not liking baths and his not being able to sit up for them, it just wears me out too much!

"O God; early I will seek You; my soul thirsts for You; my flesh longs for You in a dry and thirsty land where there is no water." Psalm 63:1

Friday, June 26, 2009

Oh, To Have the Stress of a 6 Year Old!

The boys and I were sitting outside for lunch today. I try to come up with conversations to have with them, just for fun and to see what they are thinking every once in a while. As you probably know, boys don't share what they are thinking very well and I'm trying my hardest to instill good communication in them. It's a chore sometimes, but I'm hoping it will benefit them in the future. Today's topic was: "Do you know what stress is? And, What stresses do you have?"

Jacob(13) said his stressors in life were: "Exams, Tests, and Homework."

Nolan(9) said his stressors were: "I really don't have any stress, except when Gavin is in the hospital. Oh, and baseball games."

Caleb(6) said his were: "Having to hoe the garden, Picking up my toys, Having to go to bed at night or take a nap, My brothers sometimes, and Building Legos, because I can't always find the pieces that I need and they fall apart!"

Wouldn't it be wonderful to have the stess of a 6 year old?!

Just look how stressed out my 6 year old is!

Caleb laying in the sun, while reading a book:

"Even a child is known by his deeds, whether what he does is pure and right." Proverbs 20:11

Thursday, June 25, 2009

By God's Grace

After re-reading my update from yesterday and after reading one of the comments left for me, I started thinking about things. I said in yesterday's post that life was going well for us and that I felt very blessed, although sad that others were suffering so. I kind of had to laugh, because I suddenly felt surprised by my feelings of wellness! Why do I feel so blessed and happy?!

When I really think about my life, there are so many things that should make me feel the opposite probably. Life hasn't been all roses for me. My family had many struggles while I was growing up. We are far from wealthy. I live with 5 males and even a male dog! (There is absolutely no femininity in this house at all...even I have found myself becoming more male-like as I live with only boys, year after year!) I have very few friends. (Many sorta friends, but no one I'm very close to, especially since having children and Gavin...I don't have the time anymore, not if I'm going to be the mother that I want to be to them.) And.....I have a very handicapped child! So, why do I feel so blessed?!

Others might look at my life and actually feel sorry for me...some days I even feel sorry for myself! But, I do always try my hardest to see the positive side of each situation. I'm not always very good at seeing the positive side, but I try my hardest to find it!

Before I go on, I do want to say that I know that my struggles are SO MUCH easier than MANY people's struggles. I TRULY AM BLESSED! I know this and I am VERY thankful for this! I thank God daily for the blessings that he has provided me and my family and the grace that he has shown us along our way! Some people's hardships are enormous, compared to mine, and some people might even wish that they had my life! (If you are interested, you can try my life out for a day and see if it's all it's cracked up to be!) Just remember, the "grass is always greener on the other side!" :) But, to sum it all up, I AM BLESSED, BLESSED beyond what I deserve!

But.....Life IS very difficult at the VW house! It is CRAZY! It is LOUD! (I worry about having neighbors, because our boys are so obnoxious and wild when they play outside, seriously!) They are great boys (TRULY GREAT!), but they argue and fight and whine and complain a lot! And, There are other issues in my life that I don't readily share with everyone. Plus.....

Having Gavin makes almost everthing more difficult! He HAS advanced since his stroke, but he is still like an infant. All our daily acts of living are made more difficult because of his needs. My neck hurts. My posture is horrible! He's hooked up to a pump most of the day, so there is more to carry around than just him! He doesn't support himself, so holding him or carrying him is more strenuous on my body. He doesn't sit up at all! Do you know how difficult it is to go places or just sit outside on a summer day with a child like Gavin?! There is no really good place for him to be, unless he is being held. He lays flat on the floor or rolls around, but outside this isn't good with ants crawling on him! In his stroller he is fine for a while, but he leans and slides down constantly, so he never looks very comfortable and I am always striving to keep him comfortable. He has breathing treatments 2 times a day, that last about 40 minutes each. He takes many meds that I have to make up daily. He has more doctors than any child ever should! He gags and spits up and I'm always having to run to where he is to make sure that he doesn't aspirate what he spits up! I could go on and on, but I won't.

The point that I'm trying to get to is, why do I feel happy and blessed? If I really think about things, I could get really down in the dumps very quickly, but I can honestly say that I am happy with my life! Of course, I have bad days and hate my life at times, but for the most part, I am content! Why is this?

I was just thinking about all of this when I logged on to another blog that I read. When I got to their site, I saw the title of their blog, "By God's Grace." There, in front of my eyes, was the answer! I am only content and mostly happy because of God's wonderful grace!

Life is far from perfect. But, God has supplied me with resources and love, to not only get through my days, but to get through them feeling content! I am so thankful for this and thankful for His promises to me as well!

I will struggle every day, while here on earth, but I can rest in His grace and love! I sometimes look at Gavin and wonder if he is happy and content with life? His life seems so boring to me, but I have a feeling that God's grace is bountiful for him as well!

Just look at this sweet boy! Gavin is the picture of contentment! Thank You Lord!

"For the Lord God is a sun and a shield; The Lord will give grace and glory; No good thing will He withhold from those who walk uprightly." Psalm 84:11

"But grow in the grace and knowledge of our Lord and Savior Jesus Christ. To Him be the glory now and forever. Amen." 2 Peter 3:18

Wednesday, June 24, 2009

Lacey, This One Is Just For You!

I usually try to do an update on this blog every 2-3 days. I do this because it's fun, it's great therapy for me and I want to have a few posts each week for my blogging friends to read. I know how much I look forward to going to their sites and seeing their cute children and reading about their days, so I should try to do the same for them!

It's been 6 days since I've done a post here. I just haven't felt like doing one. I've been keeping up with my blog friends, but I haven't felt like sharing our life lately. I think it's because I am feeling a little guilty about how boring our life has been lately. Don't get me wrong, I LOVE boring! This means that things are going fairly well for our family and this also means that Gavin is doing well, for Gavin anyway. So, although we are doing quite well, I am hearing about so many people who are suffering so much right now. (Friends, Family, Blogs, Etc.) This makes me feel like I shouldn't blog about our boring life, by sharing cute pictures of our naughty boys or by sharing our fairly uneventful days right now. There just seems to be so many more important things to focus on.

I am feeling so sad for so many people and wishing that there were more that I could do for them! It's so heart wrenching, knowing that others are going through trials, and not being able to do anything for them, except to pray. This is what I've been doing a lot of lately. I wish that there were more that I could do, but I know that this is probably the best thing that I can do for them anyway, besides being there for them when they come to me.

I've had lots to blog about lately, because even when it's boring at our house, it's never really boring! We stay quite busy here with 4 children, especially when one is a Gavin! But, like I said, I just feel guilty about our blessed life, when others are suffering.

Yesterday a blogging friend left a comment for me, wondering where I've been and that she needed her "Gavin fix". This made me realize, that even though life is going well for us, others probably get some joy from reading about our life too. I know that I get joy from the blogs that I read, even when they may not be doing well, because I have become friends with these people and have grown to love their precious children. So, I am usually disappointed when I go to their site to "get my fix" and there is nothing new to read! So, here is "your fix." :)

Yesterday Gavin had his last day of physical therapy for the summer. They have a 3 week break and then his PT is having surgery, then they have another break and then school starts already! So, we are sad to know that Gavin will no longer be seeing his therapist that we have grown to love! She does home visits and since Gavin turns 3 in September, he doesn't qualify for home visits anymore. Plus, he'll be going to school starting in September and they will do therapy there with him. (Yes, I'm still scared out of my mind, thinking about sending him to school, but I know that it's probably best for him.) Here he is doing some therapy with her.

He looks like he is crying in the 1st picture, but he was just "talking/yelling."

My pictures of him always seem blury, because he is always moving! I guess that I should be happy about this, since there was a time in his life that he rarely moved at all and now, he's at least trying to get around! Therapy was always more like playtime, and it took me a while to see that this is how you do therapy with children. Sometimes Gavin liked it and sometimes he didn't, but I know that he has made progress with it! His PT was always thinking and she came up with many good ideas for us! And, when she couldn't find a solution, she asked around to get ideas. We will miss her, but it will be nice having the rest of the summer off too! We'll just have to work him hard ourselves!

I hope most of you are enjoying your summer! It is SO HOT and I feel like I'm melting! (Better than snow though!) But, I wish that I could walk around in onsies or bathing suits, like our boys do! They complain that it's hot and I tell them, "Don't complain to me! At least you have short hair and can walk around without a shirt on!"

Please continue to pray for Jaxson and his family! (I posted about him last week.) His surgery went well, but he is in lots of pain and having some other issues now. It breaks my heart to know that he has had to suffer so much in his short life and to know that his future is so very uncertain! Remember this family in your prayers! Thank you!

"But may the God of all grace, who called us to His eternal glory by Christ Jesus, after you have suffered a while, perfect, establish, strengthen, and settle you." 1 Peter 5:10

Thursday, June 18, 2009

Great Times With My Brothers!

I see a big difference in Gavin since our other boys have been home for summer vacation. He is SO happy! I think that he is happier having all the commotion going on with his brothers home all day. He is more vocal and more active. And, he is certainly getting a lot more attention!

Snuggle time with big brother Caleb:

Playtime with big brother Nolan:

Sleepy time with big brother Jacob:

I love that our older boys love Gavin! It makes me so happy to see them WANT to be with him and WANT to play with him! They truly enjoy having him as their brother, even though he can't do a whole lot or get up and play with them. As I type this they are all rolling around the living room floor and making silly noises together. This makes their Momma's heart feel so full!

Gavin LOVES his brothers and his brothers LOVE him!

*Just so you know, as soon as I typed about them playing so well together, Nolan came to tell me that Caleb had bitten his leg and then Caleb came to tell me that he bit Nolan's leg because Nolan was sitting on top of him! I guess we have to take the good with the bad! Life with the VW brothers is never boring, that's for sure!*

"Honor all people. Love the brotherhood. Fear God. Honor the king." 1 Peter 2:17

Monday, June 15, 2009

Pray For Jaxson!

My heart belongs to 5 guys:

But there is a 6th little guy that has stolen my heart!

Jaxson is an inspirational little man, who I've had the pleasure of 'meeting' through this wonderful world of blogging. He and his mom have made quite an impression on me and I am so thankful to call them my friends!

Tuesday morning Jaxson will be going in for surgery. I'm asking that you please pray for Jax and his family and maybe even visit their site ("Jaxson's Fight", which the link is found on the left sidebar of my blog) to offer them words of comfort. Jax and his family have gone through a lot with Jaxson's health and they have a trying road ahead of them as well! Jax reminds me a lot of Gavin, because they have both encountered similiar trials. Please lift him and his family up in prayer! I pray for only the best for this adorable child, who has captured my heart!


"Rejoice always, pray without ceasing." 1 Thessalonians 5:16-17

Friday, June 12, 2009

Parenting Ideas

I'm not sure if I've mentioned before how much of a handful our boys can be. But, just so you all know, they can be a couple of handfulls actually! They really are GREAT boys and I love that they all have a personality of their own! They each have such a kind spirit to them, but they each also have quite an overwhelmingly emotional side to them too! When I say emotional, I mean that they express what they are feeling, at any given moment, very well! That means that when they are happy, they are very happy! When they are excited, they are very excited! When they are acting goofy, they are acting VERY goofy! And, when they are upset, they are very upset!

I LOVE having them home for summer vacation!!! (I am serious about this! I love it!) But, I also struggle with dealing with ALL of their emotions ALL day long!

In the past month or so, I have come up with a couple of things that are kind of working to help me better parent our boys. And, since I know how crazy parenting can be, I thought that you might want to hear about them!

I have found that very little really helps to get a point across to our boys. It's usually in one ear and out the other! I've tried LOTS of forms of punishment with them and it seems that they are all futile most of the time! Our boys don't really care if they are punished or not. They may show some form of unhappiness about it, but then they just take the punishment and go off on their merry way and forget what they should have learned in the process! Plus, they are VERY stubborn, so it's difficult for them to see that they were wrong in the first place. And, like I said, they are very emotional! So all they can think about at the time of the punishment is what they are feeling at the time and since their feelings are enormous, forget about getting past what they are thinking long enough to explain to them what is right or wrong!

I HAVE found a couple of things that work better with our boys. Here they are:

1. I have them pick their own punishment. I didn't think that this would really work the first time, but I have found that their punishment is actually better than my own punishment a lot of the time and they seem to learn from it more when they have to put thought into it.

The next one requires telling you a story, that you may have heard before. The story is about a boy that is playing on the railroad tracks, when a train starts to come and the child is not aware of the train coming. The dad has to yell for the child to "Lay down on the tracks!" because they didn't have time to get to the child and the child would not have had time to run off the tracks. So, because the boy heard and listened to their dad RIGHT AWAY!, they were saved from getting injured or killed by the train!

2. This story made an impression on our boy's minds, so now when I tell them to do something and they aren't doing it right away, I tell them to remember the "Train story." This is a huge one at our house, because our boys listen and act at their own speed.....which is very SLOW! I say to them, "You would have been dead already, if a train were coming, since you aren't listening to me fast enough!" This makes them think about it and move a little faster.

The next one helps when Nolan and Caleb are goofing around and not finishing something that they need to finish quickly. (For example: eating, getting dressed, picking up their toys.) They are CONSTANTLY goofing around and like to make each other laugh! This can be VERY frustruating and makes my blood boil when we are on a schedule and need to get moving fast! Everything takes at least double the time for both of them, compared to the rest of our family. So, this is a big one for me.

3. When they are being slow about getting something done, I say to them, "The first one done gets a hug and a kiss!" Surprisingly, this usually works! They rush to finish and come running for their prize! I'm sure that this will only work a while longer, because soon they won't want hugs and kisses from their mom, but for now it works wonders with them!

The next one is something that I just tried out recently with them. With summer break here, they are getting on each other's nerves a whole lot more than normal. They are constantly trying to get a rise out of one another and coming to me to complain about each other. So...

4. I decided since money seems to motivate them, I was going to make them give me some of their money every time they did something that I had told them multiple times not to do! For example, Jacob and Nolan love to call Caleb a munchkin! Caleb gets SO angry when they do this, so I told them that this was a naughty word at our house. They kept saying this to him, so I said that they would have to pay me everytime that they said this to him. This finally got their attention! I've used it in other situations as well. So, either they will try harder this summer, or else I'll make a profit from their mistakes! :)

There you go! Parenting advice from Alicia! (A mom that never seems to have her children under control! HA!) Also, just so you know, I don't always use these rational tactics to try to control my children. Some times, (more times than I'd like to admit) I absolutely LOSE IT and then feel guilty for turning into such a horrible mom! I try my hardest to always try to teach our boys lessons in a peaceful manner. But, remember...our boys are WILD!.....Wild boys, that I wouldn't trade for anything else!

I would love to hear from all of you as well! What advice do you have for this Momma of 4 that might help to make this summer run smoothly? Please share!!! And, have a great summer!

"The beginning of strife is like releasing water; therefore stop contention before a quarrel starts." Proverbs 17:14

Thursday, June 11, 2009

A Couple Updates

We went to the neurologist this week to talk about getting Botox injections for Gavin. There is so much conflicting information on getting this done. I went in not sure about the whole thing, but I left feeling fairly confident that it's something that we should at least try with Gavin.

I really trust his neurologist! I am confident that he would not steer us in a bad direction. He has done this for the last 5 years, for 100's of patients. He has had great success with it. He said that he only had 1 patient that had any adverse side effects, so I'm feeling pretty good about those results. Gavin's neurologist used to be an orthopedic surgeon, so he's a very smart guy. He said that he thinks that it could help Gavin a lot. Gavin has so much spasticity in his lower body and it makes it difficult to bend his hips, legs and ankles. The Botox would help to losen the muscles and allow us to do some really good therapy on Gavin while he is more loose. That is the biggest thing, after getting the shots, we would have to work his muscles hard to losen them up. The doctor said that sometimes you only need a couple of injections between 3-6 months apart and if therapy is done between times, some patients haven't needed to come back for more Botox because the therapy helped to losen the patient up enough. Right now, Gavin is too tight and spastic to do good therapy on him. So, as of today, I am planning on giving this a try soon. Hopefully this will benefit Gavin greatly!

Also, I wanted to update all of you on the "mall incident." I decided to call the management of the mall, instead of writing them a letter. This way I would know that something was done about the situation. I called them last week and this week a manager called me back. She was very nice and said that I was right in my thinking. She said that exceptions to their rule should be made for children with handicaps! She said that she would talk to the security guard about this. She also said that the general manager might be giving me a call to talk more about this with me. I hope that he does, because I really want this matter to be cleared up and I want to make sure that children with special needs or adults with special needs are able to do what everyone else gets to do! I told the lady that I wasn't upset with the guard, because he was just doing his job, but that I NEEDED to stand up and fight for my child and others like him. I believe that this is a great responsibility that I have now. Gavin and others like him deserve others fighting for their comforts and rights! And, this Momma is not sitting down without a fight, if that is what is needed! But, I will do it with a smile on my face and a good attitude. "The squeaky wheel may get the grease," but I also believe that one with a good attitude gets even more! :)

And, just because I think posts are better with pictures, here is one of my little guy! Isn't he precious?!

"Better is the poor who walks in his integrity, than one who is perverse in his lips, and is a fool." Proverbs 19:1

Tuesday, June 9, 2009


Success never seems to come easily to the members of our family. None of us really stand out in the crowd, having a great talent or achievement. Sure, we all are fairly good at one thing or another. For example, Nolan has a great memory and school seems to come fairly easy to him. Jacob is a fairly good artist. And, Caleb has always been very agile. Otherwise we all have to work fairly hard to get to a level of success. This can be frustruating some times. It always seems like getting from point A to point B takes so much effort!

Take for example, yesterday. I dropped the older boys off at Vacation Bible School and left to have Gavin's blood drawn down the street. I figured that I would be back within an hour. Wrong! I got back just in time to pick them up, 2 1/2 hours later! I was told that an order had been faxed to the clinic to draw Gavin's blood. I had talked to our doctor's office 3 times to make sure that it was, but when we got there.....there was no order! So, we had to wait for almost an hour for the order to be faxed over. Then, we got back to the phlebotimist and he said, "I hate drawing blood from little ones." I should have taken this as a sign to just leave and go to another clinic, because usually when they aren't hip on drawing his blood, then they also aren't good at doing it! Gavin was SO good! The first 2 pokes he didn't even flinch or make a noise at all! He just sat there looking around and tolerating all the annoying things this guy was doing to him. The guy missed to first stick, and the second one he moved and lost the vein! And, he would'nt even attempt a third poke, even though Gavin was tolerating it VERY well!

So, we were sent to another clinic to have them try. I only had 40 minutes left to get there, have his blood drawn and get back to church to pick up the boys! We got there and thankfully got in right away! We were told that we came to the right clinic, because the girl there was "the best!" Her first try didn't succeed either and by then, Gavin started to complain a little. (I don't blame him!) Her second attempt worked, but Gavin was ANGRY!!! I felt so badly for him. But, after 2 1/2 hours, we got success!

Last week was the same for us, at the cardiologist's office. An hour visit turned into over 2 hours, because they couldn't get a good EKG reading on Gavin., The blood pressure cuff wasn't working properly and they had to get 4 readings from each of his limbs!, And, the echo of his heart took FOREVER! But, we finally got success and we were told that Gavin was doing well. He still has a moderate leak in his Mitral Valve, but his heart and body are tolerating it for now. Often times when you have a significant leak in a valve of the heart, your heart can become enlarged. Thankfully, Gavin's is not at this time, so we are very happy about this!

Gavin has also had a tiny bit of success in regaining some of the weight that he lost. He has only gained about 3/4 of a pound since we increased his calories, but at least he isn't losing any more weight!

The biggest success that our family has had in the last week is that Caleb learned to ride his bike! Our children have had a difficult time learning to ride a bike. In fact, Nolan still hasn't mastered this skill! (I feel so badly for him! He is very smart mentally, but physically he has always had to work hard. He crawled late. He walked late., Etc.) He is getting a little better at the bike thing and hopefully he will taste success by the end of the summer! Then there is Jacob, who does fairly well with physical attributes, but he struggles grasping things in school. He has to work harder than his brother, Nolan, and this really bothers him. But, when he does really well with something in school, he feels so good about it, because he had to work so hard to find success! Anyway back to Caleb, he decided that he wanted to try out the bike at Grandma's house last week and within 1/2 an hour he had great success! He is so proud and we are too! Here he is learning and mastering his bike. (His 2 favorite things lately are his bike and the football uniform that he got at a garage sale last week! He's so cute!)

Then, there's Gavin. Success has always come hard for him! He has been through so much in his short life and so much has been taken away from him, due to the stroke that he had. He lost his sight. He lost most of his brain function. He lost his smile for the longest time. But still, he finds success sometimes. Look at him! He's happy and he's alive! And, because it takes so much more time and effort to get to progress, success tastes so much sweeter and it means SO MUCH MORE to us when it comes!

I just wish that it wasn't so tiring in the process! I need a nap and I just woke up a couple of hours ago! :)

"If the ax is dull, and one does not sharpen the edge, then he must use more strength; But wisdom brings success." Ecclesiastes 10:10

Thursday, June 4, 2009

No Strollers or Wheelchairs Allowed!

I want to start out this post with a disclaimer that I rarely play the "handicap card." I try to do all the things that I need to do with Gavin, such as going places, without acting like I have a child with disabilities. I have been told by several doctors that we are eligible for a handicap sticker for our van, but I told them that we don't need it. I'm not handicapped, so why do we need one? I'd rather save the spots available for people that really need them. It IS more difficult having to walk further sometimes with all of his equipment and especially when it's so cold and snowy outside in the winter, but I CAN do it! Someday I may reevaluate the need for this, but for now I'm fine. And, I only mention that he is handicapped if there is no other option available for us to do what we want and need to do.

Having said all of this, yesterday we went to the mall. I normally don't allow Caleb to play on the children's play area at the mall because it's a germ fest, but yesterday he was behaving really well and there weren't many children playing there, so I consented. There was a sign that said "No Strollers." I saw 2 other strollers in the area and I had Gavin hooked up to his feeding pump, so I decided to break the rules and wheeled him on in. I was watching Caleb play with a new buddy he had met for just a little while, when a security guy came and told me that "strollers aren't allowed." I said, "O.K., We'll leave", but then I asked if the "rule applied to Children that have special needs?" He said, "Yes, if I bend the rule for you then I have to bend the rule for everyone." I understood his dilema. Since Gavin was hooked up to his pump, was half asleep and doesn't sit up at all on his own anyway, we had to leave the play area. I was fine with this and surprisingly, Caleb was too!

We walked around the mall some more and I started thinking that it wasn't quite as fine as I had originally thought that it was! I went back to the customer service area to speak with the security guard. I asked him if the answer would have been different if he was in a wheelchair. He said, "No." So, I said, "Children who are handicapped and unable to get around on their own aren't allowed to enjoy your play area?" He told me, "Not if they are in strollers and wheelchairs. It wouldn't be fair to others if we let them go in when others can't." This response did not settle very well with me! So, I'm thinking to myself, "How fair is it to exclude a child just because they can't crawl or walk?!" I said this to him and I also said that "I'm sure that others would understand the circumstances and just be thankful that their child doesn't have to be in a wheelchair!" Life isn't always fair! It's not fair to me that Gavin had a stroke, due to hospital error, and now he will probably never be able to get up and go play with his brother in the play area! It's not fair that other children will be excluded from so many normal childhood experiences, just because they can't walk!

The security guard said that he understood my feelings, but that I had to understand his rules. He also told me that I should "plan accordingly for the day and come to the mall when your son is NOT on his feeding pump, so that it would be easier to carry him in." (Yes, he said this to me!) I said, "Yes, I could do this, but what about when he gets too big to be carried in? What about other children who are too big now to walk in, but their parents want their other children to be able to enjoy things too and they want their special needs child to not be left out of the fun." Gavin may not be able to sit up, crawl or walk, but he truly finds and shows pleasure in hearing his brothers and other kids playing. He smiles and yells and he is happy as can be while being a part of all the fun! Why should he and others be excluded because life wasn't fair to them?!

All of this conversation with the security guard got me and Gavin no where, but I couldn't just sit back and accept "their rules." I was very calm and I do understand his point to some extent, but it really infuriates me to know that because my child has to live a lot of his life from a stroller or wheelchair, he also has to be excluded from so many things! And, don't even get me started on entrances into stores and other places! Since having Gavin, I've noticed how difficult it is for people who are wheelchair bound to just get into places! I realize that things have improved over the years, but they have not improved enough for this Momma!

Gavin has had to go through a lot in his short life and he has had to be tough a lot of the time!

This makes me want to stand up and be "tough!" for him and others like him! Because of him, I will most likely have to encounter many more outings like this, but I can tell you one thing, I will fight for his rights and I'll do it with a smile on my face, because I believe Gavin would want me to, for him and all of his buddies!

***Oh, and I do plan on sending a nice, friendly and educational letter to the management of this mall. I believe that they need to, at least, be made aware of my feelings and hopefully they will take them into consideration. If not for Gavin, then for some other child who wants to play there one day!***

"I have fought the good fight, I have finished the race, I have kept the faith. Finally, there is laid up for me the crown of righteousness, which the Lord, the righteous Judge, will give to me on that Day, and not to me only but also to all who have loved His appearing." 2 Timothy 4:7-8

Wednesday, June 3, 2009

Multi-Million Dollar Boy

This week we got a bill in the mail for Gavin's feeding supplies. Normally and THANKFULLY we don't get a bill because, between the two insurances that we have for Gavin, the amount is covered by them. I was shocked to see the amount of money it takes to keep Gavin fed for a month. The total was $671!!! This includes the formula that he is on and the feeding pump bags. The total to feed Gavin per month is actually more like $500 since I try to conserve the feeding pump bags. They say to use 1 per day, but I use the bag for 2 days, because it seems like such a waste of money and a waste of plastic. So, it's around $500 to feed Gavin for 1 month! The rest of our family eats for less than this per month and there are 5 of us! Yet, one little guy, who doesn't even like to eat, is needing $500 to eat on his own!

After I saw this bill, I started thinking about how expensive Mr. Gavin is! We are very blessed to have almost everything covered by our 2 insurances! Of course, we have to pay the premiums each year for both and occasionally there is something that isn't covered, but for the most part we are VERY BLESSED that we don't have to pay for everything! There is NO WAY that we could, if we had to! In addition to his feeding supplies, there are his medicines! This would cost an arm and a leg! I joke around that we keep the pharmacy down the road in business with just our family alone! There is also the cost of physical therapy, the many doctor's visits, all the equipment that he has and needs. Then add in the cost of his hospitilizations over the last couple of years! I saw one bill from when he was in the hospital for a long time and it was over a million dollars!!! I also saw a bill for the helicopter ride that he took, it was for $25,000!! And, he took 2 of these transport rides!

So, this week, although it seems like there is never enough money to pay for everything we need and want in life, I am taking time out to be thankful for the money we do have! I know that there will be MANY things that Gavin will need in the future that insurances will not cover. We have already had to pay for many things that they wouldn't and his needs will only become greater as he grows, but all in all we are BLESSED beyond belief! Not only do we have insurance, but we have had the blessings of many friends and family who have helped us out in SO MANY ways when Gavin was away in the hospital and we were having to live in hotels and travel a lot. Plus, we've had people give to us to save for Gavin's future needs, like a wheelchair ramp, etc.

This road has not been an easy one and I'm sure that the future will be filled with many more bumps in the road, but God has shown us in so many ways that we WILL be cared for, no matter what the future holds for Gavin and the rest of our family! I am SO THANKFUL for this!

So, you may be wondering if this little man is worth all this expense.....?????

If you ask me, he is worth EVERY penny and a whole lot more!

"You are worthy, O Lord, to receive glory and honor and power; for You created all things, and by Your will they exist and were created." Revelation 4:11

Monday, June 1, 2009


I usually try to keep this blog dedicated to Gavin, our other boys and thoughts on being a mother to them. But, today I'm here to write about something that I just don't understand. I'm here to talk about this crazy thing called Facebook. I am so confused about this thing that has overtaken my inbox. Are any of you able to help me with my confusion?

This past week alone, I've been sent about 20 requests to join other people's facebook page. The email says that the person is requesting to be my friend. I don't get this! I thought that we already were friends! Why do I have to click on the link to affirm this friendship?! What is the purpose of Facebook?! I just don't get it! It seems so 'high school' to me.

I usually just make fun of Facebook, but now I'm starting to feel peer pressure to build a site of my own! (Peer pressure...I told you that I thought it was just like high school!) Will someone PLEASE explain to me what all the hype is about this phenomenon?! Is there a good reason to join Facebook? Are people actually benefitting from having a site of their own? Like I said, I just don't get it! Help me to understand this craziness!

I refuse to build a site of my own, unless there is a good reason for it. Often times, in the past, I thought doing a blog was crazy too. I only started this blog to update family and friends on Gavin when he was so sick and in the hospital all of the time. Now I'm glad that I did this, because I have met so many WONDERFUL friends who have been SO SUPPORTIVE to me! I know that I would not have met so many fantastic Mommas, who are caring for their inspirational children, if not for this site. Blogging shares feelings, tips, support and an outlet for bad days. What does Facebook do for you? I've been to a few sites and I am not certain of the reason behind it all. Please help! What is the point? I don't want to be rude and not accept these friendships, but I just don't understand the logic behind it all.

If any of you can give me a great reason why I should jump on the band wagon, then I may just let myself be pulled into all this peer pressure. But, if you can't, then I'm going to just focus on the faces that God has blessed me with, like this adorable one and the faces of his big brothers!

Please enlighten me. Thanks for your help!

"For You will light my lamp; The Lord my God will enlighten my darkness." Psalm 18:28