Sunday, October 21, 2007

Gavin came home Saturday evening. They never did find out what was wrong with him. He must have just caught a virus and, as usual, his body just can't handle what yours and mine can. He is still on oxygen. Hopefully we can wean him off from it again soon!

While in the hospital his neurologist was on call, so he came to see him there. This was a relief since the next available appointment was in December! We did not receive good news from him. The stroke that Gavin had back in April was throughout his entire brain it looks like! The damage is not reversible either! The stroke he had is not like the ones adults have. When an adult has one it basically kills off part of the brain and hopefully the person is able to use the rest of the brain to recover. The type Gavin had is all over, but it did not "kill off" the whole brain. The neurologist says the CAT scan looks a lot worse than Gavin does visually. I don't know if this is a good thing or not. It could mean that Gavin is a tough little guy(we knew this already though!)and he's fighting through to make some contact with us and could progress further down the road OR it could mean that there is little hope for him progressing mentally or physically. The neurologist just doesn't know, but he didn't seem very hopeful. He also said that we may never be able to fully stop the seizures. He did increase one of the meds that he is on for them though. I have tried to always hope for the best, but it's not looking like a bright future for Gavin. We all really just need to accept that Gavin may never progress any further than he already has. I'm REALLY depressed about this! I don't want to accept this, but it's looking to be this way. I would really appreciate it if people would be considerate of my feelings right now and down the road. I really can't answer your questions anymore about how Gavin is doing, if he's progressing, if physical therapy is helping, if Gavin is eating by mouth. It wears me out emotionally having to go through these conversations all the time, especially knowing now that he may never get further. I understand that you ask to be supportive, but I'm just tired. This doesn't mean that we don't want to talk about Gavin and it doesn't mean that we've given up the fight. It just means that I need some space right now and that I don't want to have to always be consumed with what is going on, because quite frankly, this is how I feel---totally consumed! Please pray that I/we can not feel this way and that we are given the strength needed to care for Gavin and our other boys. Thankyou for your love and support!

I am so thankful for our other boys right now! They exhaust me sometimes, but they are such a distraction and amusement to us! I am so proud of them and thankful for them! I have been so worried that they aren't getting all that they need with all that we have to do with Gavin. I've also been worried that they will be negatively impacted by all of this. This hospitalization turned out to be a blessing for me because one of Gavin's nurses grew up with a severely special needs sister. He was very helpful to us by sharing his feelings about growing up with a sibling who required alot like Gavin does. I asked him how it has affected his life. He just smiled and thought about it a minute, then he said that "the benefits far outweigh the negatives!" He said that he wouldn't change his past and that he is a lot more compassionate and has learned so much from the experience! I could definately tell this about him! He was one of the most helpful nurses that we have had for Gavin and he had such a kindness about him! So, though this hospitalization was quite an inconvenience, it helped me tremendously in this aspect!

Please keep those prayers going for Gavin and our family! Also, please don't be afraid to talk to me about Gavin just because I don't want to answer a lot of questions. I still need your support and friendship, as it is quite a lonely feeling living like we've had to the last year. I really appreciate all of you!

Love, Alicia and Family


Anonymous said...

Alicia, We pray that God will grant you the peace that you and your family needs right now. You have been through so much and been told so much about Gavin recently. Thank you for sharing your feeling with us. May God continue to Bless you, Gavin and the rest of the family. Trust in the Lord. Love The Hilton's

Anonymous said...

Alicia and family,
My husband and I have prayed for you, Gavin and your family quite a bit in the past year. We will continue to do so. Keep looking to the Great Physician for your strength. We also have a severely, medically fragile child. We have taken care of him for 17 years and we completely can relate to your dealings with people in the public as well as the constant hospitalizations and doctor's visits. My daughter is 21 and going to be an RN in May 2008. She is going into the critical care pediatrics. I feel and she would share as well that a great deal of this reason is because of what she has experienced with her brother through her life. God has a plan for your boys as well as for you and Joel through this. God is asking you to take care of Gavin for Him. You were chosen by God to be Gavin's parents. You are doing great!!! Just know that you are in our thoughts and prayers often. Keep looking to Jesus for your strength!! Chris Corwin (friends of Steve/Bev VanderWall & Rachel Weesner)

Julie said...

You are amazing & we love you so much.
Julie, Tim & Rena

Anonymous said...

I understand your fatigue. One lesson I learned is that the best way to communicate what you need is to just come right out and say it. If distance from all the questions is what you need, I admire that you said it!

As always, Gavin's little "neighbor" prays for him every night. Just know that you are thought of daily.

Anonymous said...


You are a very strong person and I give you lots of credit for being so "brave" through all of this--you need to vent your feeling and not let them bottle up inside of you. I can relate to your pain and fustration in some asspects--and I can only say that "god has a plan"--we might not understand right now but we will. Our thoughts and prayers are with you daily.

Ryan and April Ruehs

Anonymous said...

Alicia and family, God be with you all. It is so hard when we can't see what God's plan is for us or those we love and care for. We know that "all things work for the good for those who love the Lord" but sometimes it is hard to keep going and focus on that. We continue to pray for you all. Love, Dalene and Mike Wilkinson

Anonymous said...

Once upon a time, God knew he had a very special child to send down to earth. God had to pick a special family and especially a special woman to gift this child to. A special woman to be a good Mother to this special child ( His child). A woman of grace. A woman who would give this child the best care and love she possibly could while he was here on this earth. A woman, who because of this child who would somehow galvanize people and help people to become closer to God. A woman, who would help people to become better at prayer and at seeing God’s way and truth through their own difficult times. A woman, who is of great faith and strength. A woman who is also loving and kind. God knew it would be so hard on this woman, so he decided He had to pick a woman who has already been raising children and pointing them towards God. He needed an exceptional woman, her exceptional husband, and her exceptional family. A woman who would unconditionally love this child even if this child did not thrive or progress in the way the world thinks every child should. God knew that this woman would care for His child, would bring people to Him through her faithfulness. Alicia, God picked you. Do you know the thousands of people YOU and Gavin have touched? Literally thousands!!!! More than even some ministers have. Gavin knows a mother’s care and love because of you. You have been an inspiration to every person who has ever visited your site and even to people who have only heard of Gavin and you from others.

You need to rest right now, you need to take care of yourself and Gavin. Your other children will be fine because you are “raising them up in the way they should go.” It isn’t your job to heal Gavin, just to love him and take care of him. I hope you don’t think this message is to patronize you. It has been in my head since I read your latest posting and I believe God wants me to say these things to you. May God bless you, Gavin, Joel and your boys

Anonymous said...


EVERYONE I know with who has a person with disabilities in their families says that. They wouldn't trade the experience. Right now, that doesn't seem possible, I'm sure. But, I have witnessed teenage boys(!) minister to the their dad in such a way that is not common amongst teenage boys. A friend who works in victim witness work does so b/c her brother who has Down Syndrome helped make her such a compassionate person.

You are already a woman of great faith. Some days I read your blog just to remember what a woman of faith is like!

So, I'll continue to pray for your peace and for Gavin's comfort. He (and your family) have had one very difficult first year. It's really okay to feel consumed, as it would any mom. The fact that you have three other healthy boys is a blessing, but it sure turns up the "tired" feeling a bunch. I just have one at home now and some days that's a struggle.

Do know that you continue to inspire so many of us. Thank you for that incredible gift.

A bit of poetry from Gibran:

Your joy is your sorrow unmasked.

And the selfsame well from which your laughter rises was oftentimes filled with your tears.

And how else can it be?

The deeper that sorrow carves into your being, the more joy you can contain.

Is not the cup that hold your wine the very cup that was burned in the potter's oven?

And is not the lute that soothes your spirit, the very wood that was hollowed with knives?

When you are joyous, look deep into your heart and you shall find it is only that which has given you sorrow that is giving you joy.

When you are sorrowful look again in your heart, and you shall see that in truth you are weeping for that which has been your delight.

Some of you say, "Joy is greater than sorrow," and others say, "Nay, sorrow is the greater."

But I say unto you, they are inseparable.

Together they come, and when one sits alone with you at your board, remember that the other is asleep upon your bed.

Verily you are suspended like scales between your sorrow and your joy.

Only when you are empty are you at standstill and balanced.

When the treasure-keeper lifts you to weigh his gold and his silver, needs must your joy or your sorrow rise or fall.

Helen Lehman

Anonymous said...

Alicia and family,

I am continually praying for Gavin and your family. Gavin is close to my heart because I am a special education teacher and one of my very first interactions with a special needs individual was a little boy with Down Syndrome. I have found that it is those with special needs are the individuals that you can learn the most from. They are patient when we become demanding, they show love at the most difficult times, and they know just how to cheer you up when you are down. I know that Gavin was brought into this world to be a blessing, no matter what God has in store. I will continue to pray for Gavin and your family.

Melissa Beld (Jim and Sharon's niece)

Anonymous said...

Alicia, my heart aches for you - I wish I could do something to make things easier for you.

My good friend's niece was shaken as a baby at her daycare and suffered from severe brain damage. Every doctor told their family that Olivia would never eat on her own, smile, talk, crawl, walk. Guess what! She does all of those things and MORE.

Please don’t lose hope. I look back and think about all of the progress Gavin has made so far, he has come such a long way!!

Gavin is so lucky to have such a phenomenal mother who cares so deeply for his health and wellbeing.

PLEASE call us if there is ANYTHING we can do!!!

We love you so much, Jill and Mike