My Little Fighter and My Big Slugger!

When I saw this costume, I had to buy it for Gavin! If you were to define the word fighter.....it would have Gavin's picture behind it! Gavin has, and continues to, battle lots of obstacles in his short life. But, even when the doctors have had him down for the count.....with the help of God, Gavin has always stood up to fight once again!








I simply adore my little fighter and I couldn't be more proud of him!

As for Caleb, the following pictures definitely have him in his element! If you are ever looking for Caleb, you can almost always find him doing one of the following:

1. Playing some form of Sport.
2. Dressing up in some kind of outfit or uniform.
3. Running, catching, throwing or MOVING!!!







I just wish that I could be that cute and have that much energy!

My boys can be so much fun!

"The Lord will fight for you, and you shall hold your peace." Exodus 14:14

Emotional Momma

Let's see.....

Gavin has been sick for over 3 weeks. The weird thing is, it doesn't seem like he's sick because he is happy as can be, he has no fever and his O2 sats are great.....but, he is extremely stuffy and it sounds like he's snoring BIG time when he is just breathing. He's gagging, retching and spitting up a ton. And, he is coughing lots too.....probably from all the spitting up that he is doing, which means that some of it may be getting into his airway. I have had 2 Dr. appointments for him, and both have been canceled. One due to an error of mine and one due to the doctor having to cancel, because he was sick. (Nolan and Caleb thought that the latter was very funny, because he's a doctor.....I guess they think doctors don't get sick?.....and also because this would mean that the doctor would have to go see a doctor!.....insert cracking up here!.....my boys are nuts!) :)

Anyway, I have no idea what is going on with Gavin, but I do know that all of this is wearing on the Momma! I don't like to see him suffer and when he is gagging and retching....which is a normal daily occurrence, but lately it's an all day long thing!.....he definitely looks like he's suffering! Plus, he has been having some weird seizures, although the neurologist doesn't think that they are seizures, because he is totally coherent while having them. But, they sure look and feel like seizures to me! They say that it's something neurologically going on, but not seizures??? Whatever they are, I don't like them and neither does Gavin, because he usually fusses and cries when he has them....which is not typical of Gavin, unless you put him in water. Seriously, Gavin almost never cries or fusses, unless he is mad or not feeling well.

Anyone have any ideas what is going on with him?????

All of this wondering, and running to help Gavin when he is gagging, and mostly being stuck inside is making this Momma a little grumpy and a lot emotional!

Well, there is more to the emotional part, but I'll get to that later. First, here are some cute pictures of Gavin and Daddy. I love them, because it shows Gavin being silly, cute and showing off his happy personality!






Isn't he a little honey?! Well, I think so anyway!

Here he is with Daddy's hat on. Oh, and you might notice in the background, a girl that also has Down syndrome. She is the one at the table behind them. She is wearing an orange headband in her hair.



Seeing her made me so happy! I get such a swelled heart when I see someone else who has Ds, like Gavin does! She was so cute!

But.....seeing her also made me emotional.

She was so high functioning, and this is what made me feel sad and emotional.

There is such an instant bond with parents that have a child who has Down syndrome, but for parents like Joel and I, there is also a sense of abnormalcy, to be around the typical person who has Ds. It's difficult not to feel a huge let down, knowing that Gavin could have grown up to be like this girl. He could have had the opportunity to walk one day, eat at the table with his family, enjoy numerous activities......etc., if only he hadn't had that massive stroke, which was the fault of non-observing and non-listening medical professionals! You have no idea what it feels like to see your son in someone else, but to know that they will never be like that person! Gavin's brain was severely damaged by this stroke and it could have been prevented, but it wasn't, and now our life is forever in a stand still. Gavin is 4 years old, but at a 4 month level mentally and developmentally.....this is a hard pill to swallow every single day! Most days I am really good with all of this, because at least I have my sweet boy and he can smile and he brings so much happiness to our family.....but when I think of the "what could have been's", all of this really STINKS!

Right now, caring for Gavin is difficult at times, but it's only going to get harder, as he grows. Each and every day I try to come up with things to do with him and places to put him to lay down or sit.....but, when your 4 year old can't even sit up on his own, there aren't a whole lot of options! And, this makes me sad and it makes me feel guilty when I have to leave him lying on the floor by himself to do......pretty much NOTHING! He is legally blind from the stroke, plus he's mentally a 4 month old, so watching cartoons isn't an activity for him to do. He has to be bored, just sitting there or lying there, with almost nothing to do! But, I can't and don't even want to always entertain him and stimulate him.....but when I'm not, I feel sad and guilty! At school he gets lots of stimulation, but he hasn't been to school for 3 weeks, so he must be bored out of his mind....of course I don't even know what is going on in that mind of his, because he is only at a 4 month level!

Can you see how this would be emotional on a Momma?!

I really feel alone in this world. There is almost no one who knows what I am going through and what I feel on a daily basis. I don't "fit in" with Mommas who have all typical children, and I don't "fit in" with mommas who have other children with Ds, because although they are going through hurdles of their own with their child, their child still has the opportunity to advance......Gavin is likely to stay at this level forever. Gavin and I just don't fit in and this makes me feel sad.

I feel so blessed to know of one Momma and child who has an idea of what this life is like. But, I only know them through blogging and they live far away, so the support isn't really there. And, actually, I can't even say that I know exactly what their life is like, because Jax is even more fragile than Gavin is and he's gone through way more than Gavin has had to go through. But, I feel blessed to "know" them and have the long distance support of such an amazing Mom and boy! They even have 4 boys in their family, like we do! We have lots in common.....except too many miles between us. :(

I recently read a blog about a Momma who's child passed away. She said that people tell her that the saddness gets better with time. But, she said that this is so far from the truth! Each day may even get MORE difficult, since having lost her sweet girl! ( I can't even imagine the hole that would be there if one of my children died before me! I seriously don't know how I could go on each and every day! ) While I'm not even trying to correlate the two, I'm going to use this to explain something.....Gavin having lost his opportunity for a future of advancement, is somewhat similiar to suffering a death of a child. The promise of a productive future with Gavin is gone in so many ways. Gavin will never be what he could have been.....and this leaves me with a hole in my heart and mourning every single day. BUT.....I still have Gavin and my heart's hole is no where near the size of this Mother's. My hole can be filled in an instant, with one of Gavin's sweet smiles and with the Grace that God supplies me with every day!

Please pray for all the Mommas out there who are longing to be with their child today!!! The thought of this pain literally breaks my heart!

Well.....I'm actually feeling quite better after typing all of this out! Sometimes I just need to release all of these feelings, then I can get on with my day and feel happy again. Because, Gavin TRULY makes me feel happy! I just wish that his life could have turned out a bit different.

Enough of the sad.....how about some Gavin pics to put a smile on your face!


"OK Dad, enough of the hat already! It doesn't even fit me and it totally doesn't match my outfit either!"



"Thank you! That makes me much happier!"





"He who heeds the word wisely will find good, and whoever trusts in the Lord, happy is he." Proverbs 16:20

Busy living life!

31 days of blogging?.....That went well, didn't it?! We have been too busy living life to keep up with a blog too! I should have known I couldn't do it! But, I'm back at it....just not every day. I don't know how people find time or enough to say to blog every single day?!

So, what have we been up to during my blogging absence? We have been busy with soccer, school, laundry, camp-outs, appointments, SOCCER, homework, visiting family, LAUNDRY, having fun, cleaning, being SICK, oh.....and more soccer and laundry! :) In other words, Living Life!

Gavin has been sick for the last 2 weeks. He appeared to be better last week and then a day later, it came back even worse. He has been so junky, mainly in his airway and he sounds like a bullhorn when he breathes. He is coughing lots and gagging and spitting up a ton! He was generous and gave it to me, but thankfully I got over it fast. I felt so tired and grumpy when I had the illness, but you would never know that Gavin was sick if he didn't sound like he does! He is still such a happy boy and so good natured! Have I mentioned how happy this boy makes me and what a lesson he is to all of us?

Here are some pictures of Gavin lastnight.....sick and all!






Yep, he's a trooper!

Since he hasn't had a fever and his O2 sats are staying good, I haven't taken him to the doctor, but he hasn't gone to school for 2 weeks. He has an appointment on Thursday, so maybe we'll have to start an antibiotic, if he isn't better by then?

We haven't stopped living life just because he's sick though.....and I'm thankful that we haven't had to. It's been a year and a half since Gavin has had to be in the hospital and this is really quite amazing! For a boy with so many health issues, he is doing remarkably well! I am so thankful for this! With a child like Gavin, you never know when life will have to stop for a while, so until then, we plan on living life to it's fullest, each and every day!..........I just wish laundry wasn't such a big part of that life! :) I'm off to do some more of it, and also to give my sweet boy another breathing treatment..........with a SMILE on my face, because we are able to be at home, and not in the hospital! :) Life really is good! And, so is God!




"A merry heart does good, like medicine, but a broken spirit dries the bones." Proverbs 17:22

BETTER Brothers - Day 7

In my opinion, having Gavin in our lives helps to make us better people. Since Gavin always has a smile for us, and he is usually in a great mood, it tends to ware off onto the rest of us. Plus, since Gavin is very dependent on us, we have had to become less selfish than we would naturally tend to be. I know this is true for me anyway, and I have noticed that it has had an affect on our other boys as well.

Our older boys are quite competitive with each other, but they are never like this with Gavin. Many times during the day I hear things like, "He wasn't playing fairly! He cheated! He took this from me!", when they are playing a sport or game with each other. But, when they are "playing" a game with Gavin, they are always kind and let him "win".

It is so cute to see Caleb wrestling with Gavin!




Of course, Gavin can't take part in the wrestling match what so ever, but Caleb has a great imagination, and in his head, Gavin is the BEST wrestler ever! Nolan agrees with this and calls Gavin the "ULTIMATE baby", who can take down anyone who might try to fight him! Nolan and Caleb come up with some great stories about all that Gavin has done in his life.....of course everything they say is a big story, but in their heads it appears to be the truth! There is absolutely no competition when it comes to Gavin.....according to his big brothers, he is the best at everything!





Maybe it's because they wish that Gavin could do more or maybe they are just playing with him as if he can do more? I'm not sure what they are thinking, but it's nice to see them want to play with Gavin, even though Gavin can't really play with them. It has made our boys less selfish and more thoughtful of others.....and I think this is a great thing!

Another thing...Caleb is not very keen on reading. It's a struggle to get him to practice reading each day. He complains and tries to get out of it, and is constantly asking when he can stop. But.....I have found that if I ask him to read out loud to Gavin, he will read better and longer, than if he reads with me. Maybe it's because he knows Gavin can't read on his own or maybe he just wants to be nice to his little brother and spend time with him? Whatever the reason is, it's adorable to me that he is willing to read to Gavin, plus it helps him learn to read better in the long run!







There are many more instances where Gavin helps to make our family learn to become better people. The point that I'm trying to make is this.....we really needed Gavin in our lives! Considering he isn't capable of doing much of anything, he has certainly brought about many great blessings, just by being here!

Each day we have with Gavin can only make us better brothers and better people! The world we live in can be such a selfish place! Having Gavin helps to ensure that we always have someone else to think of besides ourselves. And for this alone, we are very thankful to God for sending us Gavin!


"And be kind to one another, tenderhearted, forgiving one another, even as God in Christ forgave you." Ephesians 4:32

SWEETER - Day 6

This past weekend our family, and my Mom, took part in our yearly Fall tradition of driving to a town near us that holds a Harvest Festival every year. On the way there we stopped at an apple orchard, where they make their own apple cider. YUM!

Here is a picture of the boys getting ready to watch them make the cider:



And, here are some pictures of the cider being made:

They have a machine that grinds up all the apples, and then the apples get squirted out through a tube onto a layered platform.




After they have about 10 layers of ground up apples, they use a machine that squishes all the layers together, to squeeze out all the juice from the apples.




Then the juice drips into a metal bin, and then they fill up the gallons with the prepared apple cider from there.



Watching them make the cider this way doesn't make the cider look very appetizing to me. It almost makes me not want to drink it at all! All I kept thinking was "how clean are all those machines and tools that they are using? And, don't they have to sterilize it or something?!" But, I knew that it would taste good, so I tried to put the process out of my mind and took a drink of it anyway. I'm glad that I took that first drink, because it was delicious and very thirst quenching!



When I think about it, this is kind of how it was to be given a child with Down syndrome. When Gavin was first born and they told us that they suspected he had Ds, I was a little sick to my stomach. I was fearful that I wouldn't like the "taste" of this life. I was unsure of how to digest this news at first.

Like watching the apple cider being made and thinking about drinking it, after it was just made before my eyes.....I took a look at my son and wondered far down the road about how appetizing this life would be. I knew that I would most likely like many of the "tastes" that would come with having Gavin.....but would I love being his mother, like I loved being the mother to my other boys?

While I watched the apple cider being made, I was very interested! I couldn't take my eyes off of the guys working hard to produce that sweet juice. That's how I felt when I first laid eyes on Gavin. I couldn't take my eyes off of him and I was very curious about how life would be for our family, with him as our son/brother.

I'm certain that some people are too frightened to "take that first drink", once they hear the news that their baby has Down syndrome. Some people never attempt to "take a drink" at all. Now that I know what life is like having a child with Ds, I find it extremely sad that many people don't give these sweet children a chance!

I am so happy that Joel and I weren't frightened off by this unexpected gift! Gavin has been such a WONDERFUL addition to our family! I can't imagine life without him!

Gavin may have been prepared a little differently than we were used to, and he may have come packaged in a slighty complex package.....but who wants to drink plain old water all the time, when you can drink delicious apple cider too?! Water still tastes great, but cider is definitely such a wonderful treat!

Gavin may have come to us with many "gallons" full of health issues, but in the end, he has only made everything in our life taste a WHOLE LOT SWEETER!

We are so blessed!






"How sweet are Your words to my taste, sweeter than honey to my mouth!" Psalm 119:103

Revisiting Jon - Day 5

Two years ago I blogged about a man named Jon. I had "met" him by watching a short film that his sister had made about him. I watched the film and fell in love with Jon, so I had to share him with others.

Since it's Down syndrome awareness month, I have decided that we should revisit Jon again.....just because he makes me happy!

The following are the posts that I wrote about Jon 2 years ago. If you want to read them, just click on the words "HERE".

HERE

HERE

Here are a couple of pictures of Jon:





Does he make you smile too?! :)

The film that was written by his sister was made about 9 years ago. He was 40 years old during the making of the film. That would make him about 50 years old today.....I often wonder how he is doing.

Here is a quote, written by his sister Jennifer, talking about her film and about Jon:

""The Teachings of Jon" is an insightful, soul-touching and funny documentary about my brother Jon, a 40-yr old man, severely and profoundly affected by Down syndrome. He has an IQ of 20, doesn't talk and earns less than $13.00 a year. Although Jon may never accomplish much in this world, he has an important purpose here... not necessarily to learn, but to teach."

You can get to know Jon more, by visiting his site HERE.

I think that Jon, and many like him, have a lot to teach us! If you go to their website and watch some clips from the film, you will see that Jon teaches us that we should be happy with the simpler things in life. It doesn't take much to make Jon happy and feel fulfilled.....and I think this is an important lesson for us all!

Jon, Gavin and the many wonderful people who have Ds may be different than a lot of us.....but I truly inspire to be more like them every single day!






"The entrance of Your words gives light; it gives understanding to the simple." Psalm 119:130

Such TROOPERS! - Day 4

I have met so many kiddos, who were born with Down syndrome, on this beautiful road that we've been on since Gavin came into our lives. I have fallen in love with so many of them and I have learned a lot from them in the process! One thing that I have learned from them is that they are such troopers! They persevere though it all.....and usually with a smile on their face!

Not only do these sweet children come with an extra 21st Chromosome, many times they come with serious health conditions. About half of them are born with a heart defect, or some other health concern. And, unfortunately, more than their share end up having to battle an ugly disease called Cancer! Many people with Ds have lots of obstacles to overcome in their life. It's difficult not to question, "WHY?!", sometimes! One answer that always comes to me when I am wondering why these children have to face so much in their lives is this: They provide us with such an amazing lesson in all of their hardships! You will NEVER meet a person who copes with pain and heartache better than a person who has Down syndrome does!

A physical therapist that cared for Gavin in the hospital once told me this: "You know how you feel when you are coming down with an illness? You feel slowed down and achey and just not good. This is how it feels to a person with Ds everyday." People with Ds have to work so much harder just to get through their days and when you add a heart defect or Cancer to the mix....they must feel ROTTEN! But, you would probably never know how rotten they feel, because it's just not in their nature to show it! They are such an example to all of us!

Gavin has been through so much in his short life! He has had many surgeries, many hospitializations, many blood draws, many nebulizer treatments, many illnesses.....but he has been such a trooper through it all! When he has to go in for a blood draw, the person who has to draw his blood always gets a worried look on their face, and they usually call for help from a co-worker. They say to me, "I hate drawing blood from little ones! I feel so bad and they fight me so hard!" I usually say to them, "I feel badly for him too, but don't worry he won't fight you and he will barely flinch either." They don't believe me, but as they go about drawing the blood they always say, "WOW! He takes this so well!" And, he does! He takes everything well and often times with a smile on his face for you! (Of course, there is always the exception....Gavin HATES water and he will let you know this!)

The point that I'm trying to make here is that those with Down syndrome are AMAZING! They can take a lot and they actually make it easier on us, as their parents, to watch them have to suffer.....because they do it all with such grace! I wish people were more aware of the profound lessons that people with Down syndrome have to offer to the world! They have the capability to teach us more than any classroom will ever be able to! So, open your eyes, mind and heart to those with special needs....you might just learn something great!







"The Lord is their strength, and He is the saving refuge of His anointed." Psalm 28:8

CUTE - Day 3

Enough said! :)


"So God created man in His own image; in the image of God He created him; male and female He created them." Genesis 1:27

HAPPINESS - Day 2

So........

I said that I was going to blog for the next consecutive 31 days, to talk about Gavin and to raise awareness to Down syndrome.

It's only Day 2, and I have already had a hard time finding time to blog! How am I going to do this for 31 days straight?!

Anyway, I've decided over the next month to talk about the characteristics of Gavin and what he brings to this world. Today's topic is HAPPINESS.

Gavin may not be able to talk or walk, but he can brighten up a room like no one else can! He is such a HAPPY boy and almost always has a smile for you!

There is nothing like a smile from a person who has Down syndrome! Gavin's entire face lights up when he smiles and he radiates happiness! In fact, half the time when he smiles, he smiles with his entire body! How can you be in a bad mood with this face around you everyday?!





I bet he made you smile! :)

I know that he brightens my days, and he also seems to brighten other's days too. Here are some pictures of him visiting with Grandma. She says that he is "the light of her life." Well.....she says that about all of our boys, but I can definitely tell that Gavin makes her happy!






The world is definitely a happier place with Gavin in it!


"Happy are the people who are in such a state; Happy are the people whose God is the Lord!" Psalm 144:15