Tuesday, March 31, 2009

Help Spread the Word!

Gavin is asking for your assistance today.


For some the word retarded is just a word. But for others it's a medical condition, which in turn, makes it their life. Help spread the word to stop people from using this derogatory word! Let's change the way people think about the r-word! Just like "Green is the new black" (or whatever color it may be at the moment), "RESPECT is the new r-word!" Think about it.....and pass it on!

For more information go to www.r-word.org or click on the badge above.

***********************THANK YOU!***********************

"Have respect to the covenant; For the dark places of the earth are full of the haunts of cruelty. Oh, do not let the oppressed return ashamed! Let the poor and needy praise Your name." Psalm 74:20-21

Saturday, March 28, 2009


Six years ago today we were blessed with our 3rd son, Caleb! The boy that has brought us so much joy and laughter!

The boy that keeps us on our toes with his many emotions and older than his age wisdom! The boy that this family wouldn't be complete without!

Happy 6th Birthday Caleb! We Love You!!!

"I will sing of the mercies of the Lord forever; with my mouth will I make known Your faithfulness to all generations." Psalm 89:1

Friday, March 27, 2009

Why Gavin???

After conversing back and forth with another mom who has a sweet boy (Jaxson) with Down syndrome the last couple of days, I am feeling very sad! Both of our sons were born with Down syndrome and heart defects. Both of them have had to go through a lot in their short life. Both of them have had many surgeries, many hospitalizations, many times on a ventilator, and both of them suffered a brain injury due to errors on the part of medical staff caring for them. WHY?

I know that this is not for me to ask! I know that there is a reason for this happening and I know that our heaven in not meant to be here on earth! But, WHY??!!

I'm just here venting, instead of spending the day crying about it. I can't change what has happened and I really wouldn't want to in the grand plan of it all. Because I know that God's plans are far greater than my own. Yet, I wish that I could be given a script of our lives and know the reason why this has all taken place! I struggle daily with this! I try to give it all to God and for the most part I am able to, but then these darn emotions of mine have to get in the way! I told Joel last night, that I wished that I were not so sensitive and I wish that my emotions wouldn't take over the rational part of my brain!

When I think rationally, it all makes perfect sense! We are not here to be happy all of the time. We are not here to fill our selfish desires! We are here for a GREATER PLAN! We are here to become more holy and to glorify God. As a Christian, I know all of this and I am grateful for all of this! But, why do I have to have emotions to make it so hard in the mean time?! Some days I wish that I were a robot and could just go about my business doing what I need to do and not feeling the pain in all of it......what a horrible thought really......but it sure would be easier some days! UGH!

Gavin could be doing so much now, if not for errors that were made in his care! He could be crawling or walking. He could be eating and talking! But, the reality is.....he isn't! I accept that there is a reason for all of this. I pray that I will be able to know that reason some day soon. If not, I will continue to hope in our AWESOME Lord and know that some day I WILL know why and that I will see Gavin and Jaxson walk, and I will hear them talk, and that it is all worth it until that day!

Thanks for listening! Please pray for Gavin and Jaxson and the many out there like them! And please pray that I can keep those emotions at bay and continue to trust that good WILL come from this!

The following verses come thanks to Nolan having to do devotions at school this week. These are a couple of them that he shared with his class:

"Blessed are those who mourn, for they will be comforted." Matthew 5:4

"God will wipe away every tear from their eyes." Revelation 7:17

Monday, March 23, 2009

Gavin's Voice

I'm quite sure that all parents, from time to time, sit and wonder what their child(ren) will become when they grow up. Will they be productive and kind citizens? Will they go to college? What profession will they choose? Will they know and follow God? Joel and I sit and talk about these things concerning our boys.

Our older boys aleady have some ideas of what they plan to do with their life. Jacob says he may or may not go to college and that he wants to be an actor or a stunt man. (I know...he has big dreams. I think that I read that only 1-2% of actors actually earn a paycheck, but at least he's thinking about his future.) He says he'll probably get married and have children, but at the moment he claims that he doesn't even like girls! ("They are annoying and not very nice!") Nolan has a desire to become an astronomer. He loves reading books on space and knows a whole lot more about it than I do! He is still weighing his options on who he'd like to marry, but says it's definitely in his plans! As for Caleb, he thinks that he has his whole future figured out! He plans to become a plumber, Get married to a certain young girl in his kindergarten class ("Because she is really nice and has pretty hair."), They will have 2-3 children and name two of them "Patrick and Sally.", They will go to the church that we go to now and his children will attend the school that our boys go to. He's so cute! Anyway, parents and children all have dreams of what the future might hold.

This brings me to my hopes for Gavin. What will the future hold for Gavin? His past has been littered with plenty of suffering. The present finds him doing better than many ever expected, yet still unable to do much of anything. As a mother, it is so heart wrenching to want so much for your child and not be able to do anything to change the circumstances! As a mother, I wish that I could feed him. (Mothers have a strong desire to feed their children! Jacob participated in a 24 hour fast this weekend, to raise money for a mission project and it actually made me sad to watch him not eat, while the rest of us were able to! He really wanted to do this and we were proud of him for doing it, especially knowing how much this boy loves to eat! Still, it was hard for me as his mom.) Anyway, I would love to be able to feed Gavin by mouth, but it's just not possible for him right now. As a mom, I would love to be able to watch Gavin sit up and play with his toys and find pleasure in things. I often feel so guilty that the only pleasure I can really give him is to snuggle him, kiss him and talk to him. He IS a happy little guy, but being a mom, you want to be able to give your child so much more than that!

So, what does the future hold for Gavin? Will he ever sit up, walk or talk? He may sit up one day or be able to say a few words, Lord willing, but the ability to walk seems like a dream that will never come true for him. He will likely live with Joel and I until we can no longer care for him ourselves. He will likely never get a job or even be able to dress himself. He may never eat by mouth. He may never have the ability to do anything for himself. He may never have a voice for himself.

This is part of the reason that I come here to type my feelings and chart my days with Gavin. I am trying to give a voice to Gavin and many like him in this world. (That is why this is called "Gavin's Voice.") I am normally a very private person and actually feel somewhat 'naked' sharing so much with all of you. And yet, I have such a strong desire to do this for Gavin! I am his voice and I may be the only voice, here on earth, that he will ever have. I also come here for my own well being. It has been wonderful getting to know others through this site and finding support from so many. And, it's been a great way to ask for prayers for Gavin and to get things off my chest. But, primarily the reason for this blog (in my mind) is to give a voice to someone who is not capable of giving one to himself.

I pray that those who read my words here, come away feeling more compassionate for those with special needs. I pray that they are kinder to those who aren't capable of giving or taking. I pray that they are kinder to those who are having to walk in the shoes of a caregiver. I pray that they see the love that is felt and given and know that these children or people are here for a reason and have a purpose! I pray that they see God's hand in all of this and that without Him, our days would be so much harder than they are. I pray that they will look to God in their times of suffering, and know that He is a loving God and that He has a plan for all of our lives.

As a mother to Gavin, I may not be able to do that much for him and I may not be able to do anything to change what his future holds, but I can give him love. This I can do without even thinking. I would do anything for this sweet boy! I will stand up to those who are ignorant. I will fight for his rights and comfort. I will be a voice for him, even when I sometimes feel my voice is very weak and I am uncomfortable being that voice. I will love him with all that I have, even if that means giving more than I have to give! After all, God gave me life and the ability to be this voice for Gavin. And, He gave me a great gift when He gave me Gavin!

My other boys may be able to tell me that they love me. They may grow up to do great things and to make Joel and I proud. They may teach others about God and hopefully follow Him with all of their heart. I pray that this is God's will for their lives! Gavin may not grow up to do so many things, but the fact is, he has already done all of these things, just by being here! Thank You God for Gavin! And, Thank You for sending others like him, to teach us so many great lessons. The greatest lesson of all.....Love!

I tried to download a video of Gavin using what voice he does have in this world, but being computer illiterate, I wasn't capable of figuring it out. So, here are some pictures of Gavin using his voice and 'talking' to us. His voice is truly the sweetest voice that my ears have ever heard!

"A man's heart plans his way, but the Lord directs his steps." Proverbs 16:9

Friday, March 20, 2009

Happy 1st Day of Spring!!!

As I type this, it is about 25 degrees outside. Not very Spring like weather, but still, the Robins are out and about.

And, the daffodils are springing up through the cold Winter ground.

Spring is HERE!!!

This time of year always amazes me! Some of God's most beautiful creation becomes anew again. Isn't it awesome how the earth knows just what to do this time of year, even if the temperature may still feel like Winter? I can't wait for warmer weather and anticipate watching all that God has in store for us this season! The beauty of Spring!

Until then, I'll just try to be patient for the warm weather and spend my time looking at this other miracle of God!

"Behold, I make all things new." Revelation 21:5

Tuesday, March 17, 2009

Nothing Much.....

Nothing much going on around here. Nothing relevant to say. But, something I do seem to have an abundance of: Cute pictures of Gavin! Hope you enjoy them as much as I do!

Here in Michigan it's supposed to be 70 degrees today! Yay!!! This is so refreshing, but I'm not going to get excited because by Thursday it's supposed to be around 39 degrees again! I even heard that it might snow towards the end of the month! Oh well, I guess we'll have to enjoy it while it lasts! Have a great day!

"I will meditate on the glorious splendor of Your majesty, And on Your wondrous works. Men shall speak of the might of Your awesome acts, and I will declare Your greatness." Psalm 145:5&6

Thursday, March 12, 2009

Gaining Strength

Gavin has had a great day! He seems to have most of his strength back and has been a busy boy today! I didn't realize just how weak and inactive he was until today, when he started doing things that he was doing before he was so sick. He's been scooting himself around the living room. (He does this by lying on his back and digging his heals into the floor to pivot himself or move around.) He's been rolling over again. (He does this over and over and then gets mad because he hasn't figured out how to roll onto his back by himself again!) And, he's been smiling and very 'talkative'! I'm so happy to see him coming around!

Please pray that he continues to get well, that his cough goes away completely and that he doesn't catch another virus that would bring him back down again! Thanks for your prayers and support!

"My grace is sufficient for you, for My strength is made perfect in weakness." 2 Corinthians 13:9

Monday, March 9, 2009

Happy to be Home!

Gavin is very glad to be home and we are so happy that he is! We got home yesterday evening and it felt so good! Gavin slept so good last night, in his own bed, and so did we! I even had to wake him up this morning at 9:00 so that I could do his breathing treatments. (Thanks Grandpa for taking my big brothers to school so that I could sleep in!!) He never sleeps this late, so he must have needed some extra sleep after being rudely awakened all week long by those pesky nurses and annoying oxygen masks!

He came home still coughing a lot, having to do extra breathing treatments than he normally does and having to take steroids for the next 10 days, but HE'S HOME!!! Thanks for your prayers, help and support! We are so blessed!

"Let everything that has breath praise the Lord. Praise the Lord!" Psalm 150:6

Sunday, March 8, 2009

Home Today???

Gavin is doing much better and there is talk of him being able to go home today! Yay! He was able to get through the night without any additional oxygen and slept very well! He is still coughing tons, but his lungs are sounding much more clear. Hopefully my next post will be from home! Thanks for your prayers and support! God is so good!

Friday, March 6, 2009


I can't believe that I am now the mother of a teenager! When did this happen?! I feel so old! I told Jacob this and he said, "Mom, you are probably the youngest parents out of all the kids in my class." Thanks Jake for trying to lighten the shock, but I can't believe that I actually have a teenager! I also can't believe that he is one inch away from being as tall as me!

Happy Birthday Jacob!!!!!

We love you and are very blessed to have you as our son! Now would you please stop getting older and taller?! And, Have a great day!


As for Gavin:

He has had a great day! He has been off oxygen so far today except for when he was sleeping. As soon as he goes to sleep, his sats drop immediately. It's almost as if he has sleep apnea, but he's had a sleep study and he passed it, so hopefully it's just this illness that is causing this.

The doctors have decided that this is probably a case of bronchitis that was exasperated by his having congestive heart failure, which he has due to the leak in his mitral valve. He probably had too much fluid on the lungs and just couldn't handle the illness because of it.

He has made great improvement over the last 24 hours, so hopefully we will be out of the hospital real soon! He didn't even need to wear the breathing mask over night, just the nasal canula! A HUGE turnaround! I am very happy about this!

Gavin without the oxygen on today:

Keep those prayers coming! And, Have a great weekend!

"Anxiety in the heart of man causes depression, But a good word makes it glad." Proverbs 12:25

Thursday, March 5, 2009

Some Improvement

Gavin is headed in the right direction. He is slowly going down on his need for oxygen, although he really struggles to keep his sats up when he is sleeping. This worries me because they won't send him home if he continues to have such a high need for oxygen while sleeping. He has needed to wear an oxygen mask during the night because his sats don't stay high enough with the nasal canula alone. He HATES the mask and is quite irritated by it! He pulls it off, his oxygen saturation plummets, Joel or I hear beeping and have to wake up to put the mask back on, he gets mad and pulls it off again and no one gets much sleep! It's an ongoing cycle that I pray stops very soon!

He was able to get down to 1/2 a liter of O2 this afternoon while awake, so this is a huge improvement! I was beginning to feel anxious that we could be in the hospital for weeks until he showed us that he could stay stable on a low amount for part of the day. This made me breathe a huge sigh of relief! I was kind of depressed this morning watching him struggle to breathe and thinking that this seemed never ending, but this afternoon he showed us that he was capable, plus I got a long breather from the hospital today, which definitely lightened my mood! Joel's mom came to sit with him for a few hours and my mom came this evening for a few hours, (On her birthday at that! Happy Birthday Mom!) We are so blessed with caring and helpful mothers!!! So, I was able to run some errands, do homework with the boys, and we were all able to eat dinner together at home! (Meal supplied by a wonderful friend from church! Thank You friend! YUM!!) So, tonight I am feeling refreshed and so thankful for the help that God has supplied us with!

Gavin had a lot more energy today and was kicking and 'talking' up a storm, not to mention spending lots of time playing with his tubing and trying to remove the tubing from his face! He has to have at least 8 hands it seems! He's quick and determined and it seems to be the only thing on his mind! His little face is raw from the tape that holds the tubing on his face. It looks so painful! I told the nurses that they couldn't use tape anymore. He will pull the O2 off his face whether he has tape on it or not and when it's on, his skin gets ripped off from the force that he pulls the tubing with! He cries so hard when this happens! A nurse finally made a sign that says NO TAPE because everytime I left the room to get a drink or something, someone had put tape back on the tubing to stick it to his face. Hopefully the sign will help because I don't think that his face can handle much more!

We were told to expect to stay through the weekend at least. We figured this, but were hoping to all be home by tomorrow for Jacob's birthday, but we'll celebrate another time!

Check out the decorations that are hanging up in Gavin's hospital room:

Nolan's third grade class made Gavin cards! I thought that this was so sweet and thoughtful of his teacher! The cards are adorable and made my day! They are filled with such sweet 9 year old words of comfort and even perfect Bible verses to help us on this road! We are so thankful to be apart of such a godly minded school! I know that our boys are being supported through this crazy time at school as well! Their teachers are the best!

I read this on a church sign this afternoon:

"How to get rich quick!.....Count your blessings!"

This was a perfect sign for me to see today! We may all be going through a time of trial, but if we take the time to count the blessings that we actually have in our life, we are really very wealthy! I know that I'm thankful for our many blessings this week! Thanks for all of your prayers, well wishes and support! God has blessed us with all of you!

One more thing. Today Caleb and I went to the hospital gift shop to buy my mom a ballon for her birthday. While we were paying for it, he was looking at some coins that had angels imprinted on them. He asked the lady what they were and she told him that they were coins with angels that would bless you if you asked them to. Caleb said, "I don't believe that, do you?" She said, "Yes, I do!" He looked at me like she was nuts and then looked back at her and said, "God is the one Who gives blessings to us, not angels!" I tried so hard not to laugh and felt so proud that he wasn't afraid to set her straight on Who actually brings us blessings! He is a handful, but he sure is a blessing to have around!

"Every good gift and every perfect gift is from above, and comes down from the Father of lights, with whom there is no variation or shadow of turning." James 1:17

Wednesday, March 4, 2009

Still in the Hospital

Gavin is starting to come around a little, but will be in the hospital a couple more days at least. He is still on oxygen, which is running at 2 1/2 - 3 liters, except for when he is sleeping, then he is requiring more. He is coughing less, but still quite forcefully when he does. He seems to be feeling a whole lot better. He's sleeping less, "talking" more and even gave me a couple of smiles again! It is great to see him acting more like himself! I am a little worried that he is requiring so much oxygen, but hopefully this will come around soon too!

I now remember why I hate being in the hospital so much! Life is just too hectic! It's difficult rearranging schedules, finding people to watch our other boys, trying to make sure that they aren't being neglected during all of this too, running back and forth from home to hospital, not getting enough sleep, not seeing your husband except for in passing as you switch shifts,etc............Not Fun!!! We are doing well considering, but only because we have wonderful mothers who are always there for us! THANK YOU MOMS!!! I just hate feeling so spread thin and worrying how our other boys are doing because of all the craziness! I hope they are doing well, they seem to being doing well, but who knows?

Gavin has been able to stay in ICU up until now, but will have to move to the dreaded floor this evening! This will make things more difficult, but we'll survive I'm sure. I just dread going there because this is where Gavin had his stroke and where he wasn't observed as well as he should have been, so it's kind of scary.

I am a firm believer of there always being a reason for everything. So, I'm always looking for the silver lining of why things happen. I think being back in the hospital will make me more thankful for the health that Gavin has been having up until now and make me happier being 'stuck' at home. I had been feeling depressed about things and found myself trying to control things that were just out of my hands. I am going to look at this hospitalization as a gift from God. It may be stressful and not where I want to be, but I am learning a lesson and can actually say that I'm thankful for it! I had been feeling so anxious and not giving all of my fears to God. This time of testing has made me realize that my fears are just that, fears.....I can let them consume me, or I can let go and let God. My fear of being back in the hospital and having Gavin become sick were seriously consuming me and it didn't feel good at all! Now that Gavin is in the hospital, I can see that my fears were out of control and that I should not have worried so much! It will just be another lesson to add to my very big book! Hopefully some day I will be able to look back on this time and it will help me when I am in a state like I had been in! I always say that our boys are slow learners when it comes to many things, but obviously I am too in this regard! :)

I am happy to report that Gavin's heart condition has nothing to do with this episode. They did an echo of his heart yesterday and his heart function is good, his pulmonary pressures are still good and the leak in his mitral valve has not worsened at all! YAY! Another fear removed from my always thinking mind!

So, although not where I want to be, there is still A LOT to be thankful for! Thank you for the many messages of support! Thank you for your prayers! And, Thanks to everyone that has helped us or who have offered to help us! We are VERY BLESSED!

""Come to Me, all you who labor and are heavy laden, and I will give you rest. Take My yoke upon you and learn from Me, for I am gentle and lowly in heart, and you will find rest for your souls."" Matthew 11:28-29