Thursday, February 25, 2010

Look to Him!

A while ago, I told you about a book that I am (slowly) reading. It's called "You will dream new dreams." It's a collection of stories written by parents who have a special needs child. I am gaining a lot from reading this book!

I recently read one of the stories and it was on a boy who has Down syndrome. It reminded me of Gavin. The mom talked about how her son had been through several surgeries, has to take numerous medications each day, has a severe heart defect (despite having surgery for it), has had pneumonia numerous times.......and yet, he is happy!

I find myself striving for happiness each day. I succeed one minute and fail miserably in the next. I have gone through and continue to go through many trials in my life, but none of them compare to what Gavin has gone through.......and yet, he is so happy!

Here are some thoughts from this book:


What He Doesn't Have

- the ability to conceive that some people can be untrustworthy;

- the ability to conceive that not everyone will have his best interest at heart, and

- the ability to conceive that some people make decisions that are self-beneficial.

This boy sees only goodness in people. No matter what happens to him, no matter what pain others may inflict upon him, he will never see, feel, or conceive that it may have been intentional.

What He Has

- an extra 21st chromosome;

- a label;

- people in his life who see beyond that label;

- a nonjudgmental attitude towards all individuals, and

- people who love him for who he is.....a sensitive, caring, beautiful, loving boy.

They say, "You have everything when you have your health." This boy certainly has changed the meaning of that phrase for me. I now understand that you have everything when you have a positive outlook on life. I realize that I have everything, because I am fortunate enough to share this boy's life. I am his mother.


I wish that I were more like Gavin! I wish that I were as forgiving as he is! I wish that I could live life with such a great attitude, and I wish that I could live life not knowing the pain of having people hurt me! I wish that I could put a smile on my face and heart as often as Gavin does!

I've decided that when I grow up.....I want to be just like Gavin!

He has taught me so much and he has brought me more happiness than anything else on earth possibly could! I can't even express the joy that he brings me each and every day! Joy that comes just by looking at him and seeing the good that radiates from him! God knew that I needed this special boy in my life!

Having Gavin in my life has not been an easy road, but it's a road that I would take over and over again, if I had the choice. Each day begins with me walking on tender ground, but with Gavin and God in my life.....each day is good!

So today, I will look to Him!!! And, I will also remember to take time to be happy with what I have been given, by having him!

"I love the Lord, because He has heard my voice, and my supplications. Because He has inclined His ear to me, therefore I will call upon Him as long as I live." Psalm 116:1-2

Thursday, February 18, 2010


I realize that I had my pity party just a short time ago.....but today has brought about additional emotions, so I've decided to have another one!

Have you ever gotten a phone call from your child's school? Maybe your child was not working to their potential.....or maybe they did something uncalled for at school.....or maybe they did something really nice and the teacher wanted to share that with you.....or maybe they just weren't feeling well and needed to be picked up from school. I've gotten all of these types of phone calls from school. This is normal. I can handle normal...well...most of the time.

Well, today I got a phone call from school that left me wanting to cry.

I was having a decent day. I planned to get a lot done. Life was good!

Then, I picked up the phone.

School Nurse: "Hi, Is this Gavin's Mom?"

Me: "Yes, it is." (Not yet worried.)

School Nurse: "This is the nurse at school. I wanted to let you know that Gavin had some sort of seizure on the bus. The attendant caring for him said that he was doing some spastic movements with his arms and kind of twitching and he had his eyes closed."

Me: "It kind of sounds like he had some clonus or spasm to me." (Still not worried.)

School Nurse: "Well, then he became unresponsive and went limp."

My heart sunk at this moment and I knew that he must have had some type of seizure!

Me: "He went limp?! Yes, that definitely sounds like a seizure or something. He had been sick and he usually has them when he's getting sick, is sick or is getting over a sickness."

School Nurse: "The bus attendant called me and let me know what had happened. I was waiting for him at the bus and I checked his pulse, respirations and oxygen saturations. He is doing fine now and even smiling, but I thought that you should know. Do you want to come pick him up or are you fine with him staying at school."

Me: "I'm fine with having him stay at school. Thanks for taking care of him and for calling me."

UGH!!!!! How I long for NORMAL calls from school!

This is why I hate sending Gavin to school! I'm not there to see what has happened. Now, I'm wondering how bad was this seizure? Is this like the ones that he normally has? Should I be worried? Was this really a seizure or did he just have a spasm and then go to sleep? He WAS very tired when I put him on the bus and he hadn't had his catnap for the day. Did he just zone out? So many questions and not enough answers! I feel sick about this and I don't know what to think!


Normal is gone forever.

I wish that I wasn't always waiting for the next thing to come up with Gavin. I wish that I could become comfortable with the future of Gavin and our family! I try to, but then I think; "Things are going great for Gavin. I wonder when he will get sick again and end up in the hospital? I wonder when his broken heart is going to give out and need to be repaired again, at a hospital that is 2 hours away from our house?! I wonder when his pacemaker battery is going to die and need to be replaced, with surgery, at a hospital that is 2 hours from our house?! I wonder if his seizures will stay under control?" And, on and on!

I have a deep faith in God and I know that our future is already written, but being human, I can't help but worry about Gavin and his future!

Oh, how I long for the normal illnesses of most children!

I wish that I enjoyed having Gavin go to school. I wish that I enjoyed those few hours of alone time, to get things done, but I don't! I want my 3 year old home with me! I want to be there if he has a seizure or something else happens! I don't want to get a phone call from school to learn about it!

I wish that Gavin had the normal, one or two doctors, like our other children do. But, Gavin has to have 10 doctors! I long for the days when I only had to take my child to the doctor for a check-up or a simple illness!

I hate that the pharmacy down the street knows my voice over the phone and knows my name when I walk in the door! I hate that I have to call and order food and supplies once a month from a home health supply company for my child! I wish that I could just make him meals and snacks everyday!

I hate that I can't just take him out to the store easily. I have to plan out my day around when his feeding pump is running or when he is in school. I really wish that I could just put my 3 year old into the car, drive to the store and have him walk into the store and sit in the front of the cart and ask me for snacks as we stroll through the store!

I wish that going out with my husband were easier and that getting a babysitter wasn't so difficult! We have wonderful support from our parents and they are eager to watch our children, but it's difficult to get away for long because Gavin has meds to take, treatments to do or a feeding pump to be turned on. Joel and I used to get away for a weekend, alone, once a year.....that hasn't happened since before Gavin came into our lives! There have been offers to watch him, but I just don't feel comfortable leaving him when so much can go wrong! I long for the days that I could just drop our boys off, feel at peace, and get away for some time alone!

I hate that I am complaining here! I hate that I have a difficult time just being content with my life. Lately, I wake up and actually say the word, "Content" to myself, just to remind myself that I should focus on this for the day! I should be content with my life! It's a WHOLE LOT better than a lot of people's lives, but it is SO DIFFICULT to just be content when you have a child that has gone through so much and who's future is more uncertain than most people's future!

God knows Gavin's future, but I don't, and it's difficult not knowing what is around the bend.

It's probably a good thing that I don't know, right?

I am confident that God will give me the strength to endure whatever is to come. I am at peace with this fact. I just wish that I could turn off my mind once in awhile. And, I wish that I didn't have to get phone calls like the one that I got today!

I LOVE Gavin! And, I wouldn't trade having him for the world! I love looking at his sweet little face and I love the joy and peace that he brings to my daily life!

But, I also long for "normal."

Thanks for listening again!

"Now godliness with contentment is great gain. For we brought nothing into this world, and it is certain we can carry nothing out. And having food and clothing, with these we shall be content." 2 Timothy 6:6-8

Tuesday, February 16, 2010

3 Things

Here are three things that bring such joy to my life!

No need to explain why this cute boy makes me happy! I mean, look at him! He is a natural smile inducer!

But, does he look like he is getting long to you in these pictures?! I think that I better measure him again! HMM...Now I'm beginning to understand why his pants have been looking short on him!


Then, there is Caleb!

This boy also drives me to insanity like no other child of mine, but he always makes up for it with his loveable antics!

When he dresses up into the part he is playing, he becomes the part! He has an imagination like no other and it is so fun to see those wheels turning in that little brain of his!

He is good for bringing me most of my laughs each day!


Lastly, there is Hunter.

I can't help but smile when I look into his big brown eyes! Of course, you can't see his eyes in this picture, because Caleb put glasses on him! He is such a good pup! Well.....most of the time!

I am so thankful for these 3 things today! And, I am so blessed!

Psalm 127

"Unless the LORD builds the house,
They labor in vain who build it;
Unless the LORD guards the city,
The watchman stays awake in vain.

It is vain for you to rise up early,
To sit up late,
To eat the bread of sorrows;
For so He gives His beloved sleep.

Behold, children are a heritage from the LORD,
The fruit of the womb is a reward.

Like arrows in the hand of a warrior,
So are the children of one’s youth.

Happy is the man who has his quiver full of them;
They shall not be ashamed,
But shall speak with their enemies in the gate."

Sunday, February 14, 2010

Happy Heart Day!!!

On this day we think of love and all kinds of hearts!

We may think of the love of God and the mercies and miracles that He shows to us everyday!

We may think of actual hearts:

And, Even broken hearts!

I usually think of broken hearts on this day.....not because I'm sad, but because Gavin's heart is anatomically broken. Today always reminds me how blessed we are to have this little guy in our lives! His heart may be broken, but because of God's mercy and love, we are blessed to be able to care for Gavin and his broken heart! God is so good!

This day also reminds me how blessed I am to have little hearts to love!

Little hearts that are so full of innocent love!

My heart is so full! And, I am so blessed!

Happy Heart Day to all of you! Thank you for showing love to our family!

Love and Hugs from our family to you!

"For God so loved the world that He gave His only begotten Son, that whoever believes in Him should not perish but have everlasting life." John 3:16

Thursday, February 11, 2010

Down syndrome 101

I'm not sure if I've mentioned this before, but sometimes I think that Gavin and I give a "bad name" to the condition, Down syndrome. Gavin is way more complex than the "typical" child that has DS. It's not Gavin's fault. Besides having DS, he also just happened to suffer a severe stroke at the hands of some "medical professionals". Gavin should be doing so much more than he is able to do, but because of the brain damage that was done to him, he will probably never be able to do much more than he is already capable of doing.

When others tell me that they know of someone who has recently had, or will be having, a child with DS and they want to share our blog with them to help them out, I usually say; "Are you sure about that?! If you share our story with them they might just freak out and want to go hide under a rock!"

Gavin and I can't help it, but we are not a great posterboard for Down syndrome! I wish that Gavin were just the "typical" child with DS, but he's not. This is our story and it's been a difficult one! I would LOVE IT if Gavin could do ALL that most people with DS are capable of doing! But, like I said, Gavin is not the "typical" child with Down syndrome.

In fact, I feel the need to tell others EVERYTHING about what has happened to Gavin when they first meet him because I don't want them to think that having Down syndrome is a "life sentence". I don't want them to ever even think about the word abortion, because they don't want to have a child "like Gavin". I also don't want people to get the wrong picture about what DS is. Down syndrome IS NOT a life sentence! Having the blessing of a child with Down syndrome might just be one of the GREATEST gifts given on this earth! SERIOUSLY!

Anyway, I am in love with children and adults who have Down syndrome and I believe that they actually offer the world MORE than the "average" person does. So, I almost feel guilty that Gavin and I are giving Down syndrome a "bad name".

I know that I've mentioned before that I hate that our other children have to live the life of being a sibling to a child with special needs. When I say this, it doesn't mean that I feel sorry for them. I actually think that they will probably grow up more well-rounded and be more sensitive to others, and this is a great thing! But, I do hate that they have to feel burdened by certain situations, such as, having to explain what Down syndrome is, or tell others why their brother is the way that he is.

I thought that I had done a decent job of explaining to them what DS is and why Gavin is the way that he is, but now I'm not so sure.

A couple of days ago, Caleb had to bring some pictures to school to share with his class, because he was the "special person of the week". He picked out 10 pictures and he really wanted to bring a picture of Gavin alone and also a picture of our family at the annual Buddy Walk, which raises money for the DS association.

Our boys are not embarrassed to have Gavin as a brother.....AT ALL! They cherish him and get joy from sharing him with the world. They think that Gavin is an awesome brother and they NEVER feel embarrassed by him. EVER! I am very proud of them for this, because I know that many young people would feel embarrassed to have a brother like Gavin, but not our boys! And, this is such a blessing and gift to me as their mother!

O.K., back to Caleb at school. When Caleb shared his pictures with the class and told them that one of them was a picture of our family at the Buddy Walk, his teacher asked him if he could tell the class what Down syndrome was? Caleb is 6 years old and only in 1st grade, so this is a tough thing to explain for him.

The following is what he summarized for the class:

"Babies that are born with Down syndrome have something wrong with them and it makes them not able to do much."

Then his teacher said something like this:

"It might be that when the baby was born it didn't get enough air to it's brain."

While I am not upset with his teacher for what she said, this is NOT how Down syndrome occurs! Her explanation actually makes sense in a way, because those that are born without enough oxygen to the brain, can also have similiar complications as Gavin has had.

Caleb came home feeling unsure about what he said and what the teacher said and I think that it had him thinking and a little bit concerned. This is why I hate that our other boys have to live a life with a brother who has special needs! I don't want them to feel unsure of what to say or to have to worry about what to say! It's not fair to them!

I am proud of Caleb for coming up with what he did and I am also happy that the teacher tried to teach the class what Down syndrome is! But, I was a little sad that the information was not correct.

So, I decided to do a little lesson with our boys on what Down syndrome is and I thought that I should share it with all of you, because I'm sure that there are lots of misconceptions out there! I've been asked some crazy questions of what DS is, or why Gavin is the way that he is. I've even been asked "What is WRONG with him?" and also asked, "What did you do wrong to have a child like Gavin?" It's my job, as Gavin's mother, to educate people in his defense, so here I go!


People are made up of millions of cells. Our cells have a nucleus, which is the brain of the cell, and in the nucleus there are chromosomes. "Chromosomes are DNA wrapped around proteins to form an X-shaped structure."

The diagram above helps you see that:

1. Chromosomes are found in the nucleus
2. Chromosomes are made of DNA
3. Sections of chromosomes are called genes

"DNA or deoxyribonucleic acid is the genetic code that contains all the information needed to build and maintain an organism."

Here is a Chromosome Structure:

"Each organism or person, in this case, has a distinct number of chromosomes. In humans, every cell contains 46 chromosomes.

Other organisms have different numbers, for instance, a dog has 78 chromosomes per cell."

"A karyotype is a picture of a person's (or fetus) chromosomes. It's like a picture of a person's genes. A karyotype is often done to determine if the offspring has the correct number of chromosomes. An incorrect number of chromosomes indicates that the child will have a condition, such as, Down Syndrome."

The following are charts of Karyotypes below:

This one is a picture or karyotype of an average male (boy):


This one is a picture or karyotype of an average female (girl):


This one is a picture or karyotype of a person who has Down syndrome:


"Notice that a person with Down Syndrome has an extra #21 chromosome. Instead of a pair, this person has 3 chromosomes - a condition called TRISOMY (tri = three)".

"Trisomy results when chromosomes fail to separate - NONDISJUNCTION - when sex cells are created. The resulting egg or sperm has 24 instead of the normal 23". This causes each cell, of a person with Down syndrome, to have 47 chromosomes.

This is what causes a person be born with Down syndrome. It happens in the womb, when the cells are dividing and forming the fetus. It is not anyone's fault.....It's just the way that God made them!

I printed some of this information out for Caleb to bring to school. He said that he wanted the class to know what Down syndrome was. I'm sure that it will be way over their heads, but now at least they will know the facts!

I basically told him to say that God wanted to make Gavin and others this way.
And, I summed it up for him by telling him to say that:

1. People are made up of lots of cells.

2. Cells normally have 46 chromosomes in them, but those with DS have 47 chromosomes.

3. And, this is what makes them different than the average person.....God just wanted to give them a little bit more!

There you go! A little lesson on what makes Gavin the way that he is! Of course, Gavin is way more complex than this! But, I happen to like him just the way that he is!

"For You formed my inward parts; You covered me in my mother's womb. I will praise You, for I am fearfully and wonderfully made; marvelous are Your works, and that my soul knows very well." Psalm 139:13-14

Jesus answered, "Neither this man nor his parents sinned, but that the works of God should be revealed in him." John 9:3

"I will instruct you and teach you in the way you should go; I will guide you with My eye. Do not be like the horse or like the mule, which have no understanding, which must be harnessed with bit and bridle, else they will not come near you." Psalm 32:8-9

Thursday, February 4, 2010

I'm having a pity party, want to come?!

I know, BooHoo for me! I have so many things to be grateful for, and yet, I feel the need to have a pity party for myself! But, it's my blog and that's what I feel like doing today, so either stop reading or join the party!

I should be focusing on the many blessings in my life! I have a great life! I'm without nothing. I have wonderful friends and family. I have had a full life. I have a husband who loves me and works hard for our family. And, I have 4 amazing boys that bring so much life to my days.

But, this week I guess I'm focusing on the negative.

Go ahead.....Tell me that I should be thankful! Tell me that I don't deserve all that I have to begin with! Tell me that others have it a whole lot worse than me! Tell me I'm being a big ole' baby! Remind me that a couple of days ago I posted about people going through a WHOLE LOT more than I am going though and I should feel guilty for even complaining a little bit!

I know! I know! All of this would be true!

But, still I feel like having a pity party! So here I go!

Part of my problem is the fact that I am feeling very sensitive to what others are going through and this really does get me down and thinking negatively! I hate to see others suffering and it is so difficult to just stand by and not be able to do anything about it! Life can be SO hard! And, this week I'm feeling it!

It could also be the fact that, here in Michigan, Winter seems to last FOREVER! And, I am sick of snow, ice and cold!

It could also be that Gavin has been sick and I have kept him home from school all week and I'm feeling a little bit cooped up!

It could also be that Gavin had a significant seizure the other night and I HATE watching my child have seizures and for him to have seizures in the last year usually this means that a bigger illness is coming on!

It could be that I am trying to organize our house right now and I really despise the act of organizing! I pride myself on being mentally organized, but my closets and basement are truly disorganized!

While organizing I have had to go through bins and boxes of clothing that our boys have worn, that no longer fit them. This always makes me emotional! I look at an outfit and it reminds me of them when they were young enough to wear it and I miss those days when they were small and really loveable!

So, throughout organizing their clothes, I also began to think about Gavin.

I look at the jeans that our other boys have worn and I wonder, should I keep this size? Will he ever get to be this big or will he stay small forever or not even be around at this size? (He does have a significant heart defect, even after having it "repaired" 2 times.) How long will Gavin even be around on this earth?

I know! One day at a time! And, God already has the future figured out, so why am I worried about it?! Because I'm his Momma, That's why!

Back to the jeans.....I look at the knees of the jeans and I think about how active our older boys are! Jeans don't usually last very long at our house! They get holes in the knees fast or they have patches on them that are really worn out on the knees. So, should Gavin wear his brother's jeans one day, they will have worn out patches on the knees.....and this will be a reminder to me of just how much Gavin can't do! The patches on the knees won't be from him! He'll be wearing old jeans that look worn out, but that he had no capability of even wearing out himself!

And, this makes me sad!!!

I have a 3 year old boy who can't even sit up on his own! This stinks! I hate this!

I have a 3 year old boy who goes to school, on a bus, and who started going to school at the age of 2! Our other boys didn't start school until the age of 4 and I LIKED it that way! I feel the need to send Gavin to school because I know that he is getting therapies there that he wouldn't at home, but I WANT HIM AT HOME WITH ME STILL!

I should be taking him to the mall with me to play on the play area, like I used to with our other boys! But, I wouldn't even consider it for Gavin, because there are too many germs and plus, HE CAN'T EVEN SIT UP, CRAWL, WALK OR PLAY THERE ANYWAY! I hate this!

I hate that Gavin sits at the table with us and he doesn't eat a thing! I hate that when we go to a restaurant we have to take in his stroller or wheelchair for him to sit in, because he can't sit up in a highchair and the hostess always seems to give us a funny or dirty look because she has to find a spot for our family that will fit a stroller! And, I don't like that the waitress always seems to wonder why we aren't feeding him, like we are mean parents who don't feed one of our children or something!

I may be reading into this, but this is how it feels to me! Probably because I REALLY wish that Gavin COULD sit in a highchair and could eat with us!

This stinks!!!

I despise that Gavin has to just lay around while his brothers are running all around him! I don't like that he can't join in on all the fun and activity! It breaks my heart!

I am so jealous of other families that have a child with Down syndrome, who's child can crawl or run and play! I want a "typical" child with Down syndrome! Why did Gavin have to be born with so many health issues and have to be hopitalized for so long and have a severe stroke that has left him unable to be like the "typical" child with Down syndrome?! I didn't sign up for this!!!

I never would have chosen this life! I really don't think that I would have ever willingly adopted a child who may never sit-up, crawl, walk or talk. Some people have a huge heart and sign up for this willingly.....that's just not me!

I definitely would have adopted a child with Down syndrome, in fact, I still want to! But, I would not have willingly took on the responsibilty of caring for a child that can't even sit up on his own, for maybe the rest of his life!

I'm just being honest here! I LOVE, LOVE, LOVE Gavin! And, now that I have him, I would never give him back, but it takes so many emotions to get through my day with him! I am sad every day that I go to get him up from his crib, knowing that his life seems so boring!

The funny thing is, Gavin doesn't even know that his life is boring or that it could be any better. This is his life and he is the happiest boy that I know! He is a fighter and he is so easy going and so loveable! And, it makes me want to cry just thinking of how positive he is!

Gavin doesn't have pity parties.....but his Momma does! Pretty sad, when I think about it!

But, this is how I feel. It makes me sad to see my son not able to do much. It makes me sad that our other boys' lives are different than their peers. It makes me sad thinking that this is our life.....forever! Whether Gavin lives a long life or not, he will always be a part of our family and it will always hurt knowing that he could have done more, had it not been for the stroke that he had.

It hurts! It sucks! It's sad! It's hard! It's our life.

Most days I'm really fine with all of this, but not today. I'm not fine with it and that's just the way that it is. I'll have a better day tomorrow, I always do, but today I'm having a pity party! Want to come?

"He who has pity on the poor lends to the Lord, and He will pay back what is given." Proverbs 19:17

Tuesday, February 2, 2010

Running A Marathon -- In Memory of Emma

Last week I asked you to pray for a special family who's young daughter was dying.

Emma Elizabeth Dunnam (March 1, 2006 - February 1, 2010) fought hard and ran a great race and is finally basking in the glory of her victory!

I am so saddened for her family, who fought and ran a great race as well! I can't imagine the pain that they are feeling today, but I know that they must be proud of their sweet girl!

Please be in prayer for this wonderful family! And, visit their blog and let them know you are thinking of them! May God continue to give them peace, grace, strength and love as they continue to run their race without Emma! Thank you!!!


My heart has been burdened by this family's story, and there are many others who are heavily on my mind as well. Life just seems to get more difficult each day! Sometimes I wish that I weren't so sensitive to others feelings and situations because I seriously lose sleep thinking about things! Life is so full of pain and suffering and lately it's really wearing on me. We all have our struggles, but some just seem to have more hardship placed on them than what's their fair share!

I've been thinking of Emma and her family, but also the following families who are in the hospital with their little ones:

Please send some love and prayers to these families as well:

Jaxson and his family

Ben and his family

Esther-Faith and her family

My heart is heavy for others as well, they just don't have a blog to share with you. Please think of others and remember them in prayer! I give you these blog links so that you can go to them and pray for these families. I don't wish to exploit them and make them into a "reality show" for others to get their entertainment from. Sometimes I feel that we take our blessed lives for granted and forget that there are people who are writing these blogs! People, who are writing about their most cherished thoughts and feelings and trying to share them with the world for support and prayers from others ,or to meet others who may be going through similiar trials or to share that their trials are made lighter by the grace of God. If you read about their trials, please let them know that you are thinking of them and praying!

We are ALL running the marathon of life. And, some people's races are much more difficult! Let's come together and support each other to our finish!

"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