Monday, February 25, 2008

One of Joel's many sayings is that "God gave men wives to to keep them humble." I always laugh at this! Thankfully for Joel, I take the job God gave me very seriously! :) I have a new saying as well! Mine is that God gave women children to keep her humble! Sometimes I begin to feel proud when I think about our children. I am proud of them of course, but sometimes I probably start to think too highly of my parenting skills when they do or say some things. Some examples might be when I recently asked Jacob what he wanted for his birthday and his reply was, "Probably money, since I should start saving for college." I probably thought, What a responsible boy we've raised! Or like when I recently looked over at Nolan in church to find him taking notes on the sermon, and later after reading them found them to be just about as good as mine are! I probably thought, What a smart and godly minded boy we are raising! Or like when Caleb comes up to me and says, "Mom, you are the loveliest and best mom in the world." I probably think, What a loveable child we are raising! Or, finally, when Gavin does something that doctors have told us he probably shouldn't be doing, due to his stroke. I probably think it has something to do with mine and Joel's care of him! No sooner do I have these thoughts when one of our children does something to put me in my place! World War III might break out between two of the brothers over a spiderman coloring book! Or, one of them does or says something that makes me wonder if they use their brain at all! Thankfully, our boys take their job at humbling me very seriously as well! I don't enjoy it at the moment of chaos, but I am thankful for these reminders of how we should humble ourselves before God. I am also thankful for the many reminders I've been given since having Gavin. I don't think I would have encountered or been told of so many life changing experiences of others, if not for God's gift of Gavin. Daily, it seems, since his birth I've been humbled by something I've learned or stories I have heard of others facing trials. For this I am thankful and for this I give praise!

Gavin continues to be free from seizures and may be able to go down on the amount of Phenobarb that he is getting for them again this week. I'm waiting to hear from the doctor about this. Gavin should be getting his glasses this week as well. He looked so cute in them when he was measured for them! He was not as impressed with them as Caleb was though! I'm sure it will take awhile for him to get used to wearing them. So, Gavin continues to do well for Gavin! For this I am humbled and for this I give praise!

"For I say, through the grace given to me, to everyone who is among you, not to think of himself more highly than he ought to think, but to think soberly, as God has dealt to each one a measure of faith." Romans 12:3

Love, Alicia and Family

Monday, February 18, 2008

I Am The Child - Author Unknown

I am the child who cannot talk. You often pity me, I see it in your eyes. You wonder how much I am aware of. I see that as well. I am aware of much ... whether you are happy or sad or fearful, patient or impatient, full of love and desire, or if you are just doing your duty by me. I marvel at your frustration, knowing mine to be far greater, for I cannot express myself or my needs as you do. You cannot conceive my isolation, so complete it is at times. I do not gift you with clever conversation, cute remarks to be laughed over and repeated. I do not give you answers to your everyday questions, responses over my well being, sharing my needs, or comments about the world about me. I do not give you rewards as defined by the world's standards.. great strides in development that you can credit yourself; I do not give you understanding as you know it. What I give you is so much more valuable... I give you instead opportunities. Opportunities to discover the depth of your character, not mine; the depth of your love, your commitment, your patience, your abilities; the opportunity to explore your spirit more deeply than you imagined possible. I drive you further than you would ever go on your own, working harder, seeking answers to your many questions with no answers. I am the child who cannot talk.I am the child who cannot walk. The world seems to pass me by. You see the longing in my eyes to get out of this chair, to run and play like other children. There is much you take for granted. I want the toys on the shelf, I need to go to the bathroom, oh I've dropped my fork again. I am dependant on you in these ways. My gift to you is to make you more aware of your great fortune, your healthy back and legs, your ability to do for yourself. Sometimes people appear not to notice me; I always notice them. I feel not so much envy as desire, desire to stand upright, to put one foot in front of the other, to be independent. I give you awareness. I am the child who cannot walk.I am the child who is mentally impaired. I don't learn easily, if you judge me by the world's measuring stick, what I do know is infinite joy in simple things. I am not burdened as you are with the strifes and conflicts of a more complicated life. My gift to you is to grant you the freedom to enjoy things as a child, to teach you how much your arms around me mean, to give you love. I give you the gift of simplicity. I am the child who is mentally impaired.I am the disabled child. I am your teacher. If you allow me, I will teach you what is really important in life. I will give you and teach you unconditional love. I gift you with my innocent trust, my dependency upon you. I teach you about how precious this life is and about not taking things for granted. I teach you about forgetting your own needs and desires and dreams. I teach you giving. Most of all I teach you hope and faith. I am the disabled child.

I read this poem on another blog that I've been reading. It touched me and summed up many feelings I've had concerning children with special needs. So, I thought I'd share it with all of you. I have also added a couple of items to the sidebar of this blog. I've added a few songs for your listening pleasure while you read from our site and I've also added some links to a few blog sites that I've been reading. These blogs are about families who have been blessed with some VERY special children! I talked about some of them awhile back.(Jan 25) Most have had children with Trisomy 18. I have been so humbled by reading their sites! They are suffering tremendously, but trusting in God every step of the way! Even though they are hurting so much, they have been such an inspiration to me by sharing their stories and their faith. I'm sharing them with you because I believe all of us could learn from their lessons of love, trust and faith.

Love, Alicia and Family

Saturday, February 16, 2008

Gavin has had a busy week! Last weekend he had his sleep study done at the hospital. The pictures above are from that night. All the stuff you see on him isn't even all the stuff they had to put on him! Poor little guy! At first he wasn't impressed by what the lady was doing to him. He never cried, but he wasn't very cooperative. The first sticker/lead that she put on his face he pulled off right away and politely said, "No thankyou, I don't need this." Of course, she put it back on and again he pulled it right off saying, "I said no thanks!" So, again she put it back on and he gave her a side glance of disgust, sighed and put up with the rest, knowing he was obviously defeated! I don't know how he got to sleep with all these annoyances, but soon after she was finished he dutifully went to sleep. What a good boy! The lady that conducted the test said that half the time they need to start the children on oxygen during the night because if the test is ordered the doctor feels there is a great chance that the child has sleep apnea. But, thankfully Gavin didn't even need the O2 on! This really surprised me! We won't know the results of the study for 4 weeks, but it's a good sign that he didn't need the oxygen! Yay! He also had his airway fluoroscopy test done. I was really worried that it was going to be an invasive test since it has the word "scope" in it, but it was really simple. He just had to lay under an x-ray machine while they looked at a monitor watching as he took breaths. They were specifically looking at his trachea to see if it pulled in when he took a breath. The physician assistant that did the test said that everything looked good to him, but that another doctor would have to read the test as well. So, more good news! Yay! Finally, Gavin had an eye doctor appointment. The last visit showed that he was far sighted and had an astigmatism in both eyes. This visit showed the same and that it had actually gotten a little worse. So, Gavin is getting glasses. Hopefully he will tolerate them because he really needs them. By wearing them he might even progress developmentally since it helps to be able to SEE to do things! The eye doctor did say that with the stroke he had, the glasses may not be enough, but they should help. Since Gavin's whole brain was affected by the stroke, the part that processes what you look at was most likely affected too. So, we'll just have to wait and see. There is a test that can be done to determine if the brain is 'seeing' what the eyes see, but they only do it on the east side of the state. We may look into this down the road.

Gavin did have a slight accident this week. He was sitting in his blue chair, hanging out while I was down in the basement. When I came back up he wasn't were I left him! He was laying on his belly, squirming about and, I believe, mumbling about "how inadequate the help is around this place!" Forgive me for what I'm about to say, but...I was so happy that he had fallen out! I took this as a good sign, because it means that he was being active enough to actually fall out! We have always been able to just leave him knowing that he will be where we left him, because he just hasn't been active since his stroke. Now we'll have to be a little more careful! Yay! This makes me feel a little more 'normal' as a mom to him! By the way, he did not get hurt. The chair is low to the ground and it was sitting on the floor, so no need to call social services on me or anything! Ha!

I have been so pleased with how Gavin is doing lately! My whole outlook is so much brighter! Gavin still has a LONG way to go and may not progress much further, but I'm so thankful for the progress he's made lately and that he has stayed out of the hospital for so long! He, as of now, has not had a seizure since January 15! I think this is why I have been able to feel so much lighter. I hated watching him have them! This doesn't mean that he isn't having mini ones that we just can't see, but it's great news!!! What a blessing from God!!! Oh, and he has smiled a few more times! Just little ones, but smiles all the same! Please continue to pray for seizure free days and more smiles! Thankyou!

Have a great weekend!

"I can do all things through Christ who strengthens me." Philippians 4:13

Love, Alicia and Family

Thursday, February 14, 2008

Happy Valentine's Day!

Just a quick note to wish everyone a Happy Valentine's day! Have a wonderful day!

Love, The Vander Walls

"Beloved, if God so loved us, we also ought to love one another." 1 John 4:11

"We love Him because He first loved us." 1 John 4:19

Wednesday, February 6, 2008

Our little red head is turning into a blond!

So, what do you think? Do you like Gavin as a red head or a blond? Yep, his hair color is changing just like Jacob's and Nolan's did! I like Gavin as a blond, but I think the grandmas are a little sad. At least they have Caleb, who's red hair is stickin' around! :)

Gavin has had an awesome 2 1/2 weeks! No seizures that we can see! I am sooooo excited about this! He has also been active a lot more and still 'talking' to us a lot! AND.....He has actually smiled!!! Joel said that Gavin smiled for him on Saturday, but I didn't believe him. Lastnight I believed him, because Gavin gave one to me too! It was the most precious sight I've ever seen I think! The last time that I saw Gavin smile was back in April before his stroke. Like I've said before, he gives happy looks, but hadn't actually smiled since then. That's a long time to wait for a smile! But, it was so worth it! God is so good! It's funny how differently you can look at a situation. We are so excited when Gavin does ANYTHING! We just don't know how advanced he will become due to the stroke. This may be it, but it's more than he was doing 2 weeks ago! People ask me how he's doing and when I tell them Great!, I think they are surprised by my answer since he's at a 1-2 month level at 16 months of age. But, we see progress and are thankful for EVERY little thing! So, I usually say Gavin is doing great for Gavin! (He's not in the hospital, he's trying to do things and he's alive!) And this week I feel he's doing really great!

Gavin has his sleep study this weekend and an airway fluoroscopy at the hospital to rule out trachea malaysia. I'm hoping that he doesn't have sleep apnea because then he would probably have to wear oxygen or cpap at night. He would NOT appreciate this at all! Please pray that he handles the tests well and that we are given good reports!

"Oh, give thanks to the Lord, for He is good! For His mercy endures forever!" Psalm 136:1

Love Alicia and Family