I have been very emotional again this week. Let's face it, I am most weeks, but this week my emotions have been all over the place! I've been thinking about A LOT! I've been thinking about God's grace, family, Gavin, politics, the suffering of this world.....the list goes on! The conclusion that I've come to is that we are VERY blessed! I'm talking about our family and most of you too. I've been thinking of the freedoms our country has and the conveniences we have. It has been so cold outside lately and I think about how most of us are blessed with warm places to live, food to eat, etc. I've also been thinking about others who aren't as blessed. Although, you wouldn't know it by looking at their outlook on the situation. I'm refering to some people I recently read about on another blog site. I have been crying my eyes out this week thinking about all that they are going through, but also crying for the peace that they have been graced with by God. You all know that Gavin was born with Down syndrome, which is a chromosomal abnormality called Trisomy 21. This week I learned about something called Trisomy 18. I had never heard of this. I have found this syndrome to be almost unbearable to think about. I have read about several women pregnant with babies who have or had this. What this means, basically, is that they won't have their babies for long. These women find out that the child that they are carrying may not live until birth or that they WILL die shortly after birth. Can you imagine facing months of this certainty?! You lovingly carry this child, name this child, LOVE this child, all the while knowing that you may not bring this baby home and if you do, it may not be for long! In these mothers' blogs they tell of the journey. I've read of 4 so far. Three babies have died and one is still living at almost 2 months old. The time these babies were alive on earth is between only a moment and 6 hours! I was able to read about these hours and see pictures of these hours that family was able to hold their child, love their child and say goodbye to their child. All I can say is that it's heartbreaking! But, like I said, these families were given such peace during this time and talked about how blessed they were by God for this opportunity of growth in Him and in life in general! Reading all of these stories made me realize even more, just how blessed we are! I know that our life since Gavin has changed radically, but mostly for the good! I know that I've said this many times, but I have learned SO much! I know that these families' lives are changed forever too. I quoted something awhile back that "those like Gavin weren't put on earth to learn, but to teach." I believe that God uses these children of His to do just that! What lessons we learn from them! Sometimes those who never speak are the ones that speak the loudest, through Him that knows all! Some of the most difficult times in a person's life can also be the ones that bring the most clarity. A quote from one of these mothers is this; "Eyes cleansed with tears often see the clearest." Another is this; "Much of what we fill our life with, simply doesn't matter." I agree! I'm thankful for these lessons! Please pray for these families!
Another thing I'm thankful for are grandparents! Our children our blessed with wonderful grandparents! I wonder if they even realize this?! Probably not, but they sure do enjoy having them! Not only grandparents, but great-grandparents! Add in a couple of step-grandparents, whom our children adore, and I'd say they won the jackpot! Our family has been very blessed indeed! We miss and long for those no longer with us, but gained so much from them while they were here! We use the funny words that they used still to this day and see expressions from them even in our children's faces! God is so good! Our boys and we are blessed by having them! So, I want to thank our parents and grandparents for all that they bring to our life!!! I also have added a couple of pictures to share with you. Unfortunately, I have found that we need more pictures with them, since I found that we don't have many, that are digital anyway. So, get ready to smile and say cheese grandmas and grandpas! We love you!
I also want to let you know that Gavin is having another great week! The seizure med increase must be helping because I haven't seen a seizure for the last five days! This is the longest that he has gone without one since the seizures started again! I am over the moon about this!! I am so much more relaxed when I don't have to watch him having them! In fact, despite my emotional week, I can happily say that I've even had a few carefree moments! I have enjoyed my time with Gavin a lot! He's been more 'talkative' again and more alert and active! Praise God from whom all blessings flow!!! Before the med increase he was probably having mini seizures in his brain that we just couldn't see visually, but that were making him unable to do what he's doing this week. Please pray that he continues to progress!
Have a great week! Thanks for your continued prayers for our family and others who are in need of them as well!
Love, Alicia and Family
Friday, January 18, 2008
Could Someone Please Tell Me What My Name Is?!
I have a feeling that Gavin is quite confused. Not only does he live with a family that, most days, is crazy and sounds like a school playground (You know I'm telling the truth if you've ever been over to visit! Jacob, Nolan and Caleb have loud voices and LOTS of energy!) Anyway, he is also called by MANY names! Jacob and I sat down the other day to write down all the nick-names that have been given to Gavin. Here is the list: Vinster, Vin, Mister, Mitter, Mitter Moo, Munchkin, Pip Squeak, Little Fella, Bubba, Bubby, Buddy, Little Buddy, Bugga, Bugga Boo, Little guy, The G Man and Snuggle Bug! Whew!!! Now you know why he may be just a little confused! He must think we have a lot of people living here! I guess it just means he's really loved!
Last week Gavin had a TERRIFIC week! He was so alert and active. He was also 'talking' to us tons! I was so thankful and happy about this! This week, unfortunately, he's been very sleepy and hardly 'talking' at all. He's also having more seizures than normal. I called the neurologist's office and they increased one of his meds. They are keeping him on the lower dose of Phenobarb though, thankfully! Hopefully the dose change helps and he will become more alive again. It's really hard on me when he does well with something and then has a step back again. I become so hopeful...and then it feels like a punch to the gut! Since Gavin has been born, I find myself worrying a lot more in some ways. In other ways I worry less. I feel like I'm in a constant state of worry. I always have a sick feeling in my stomach. I can be feeling so happy, but there is always a nagging feeling inside me. Sometimes I stop and think, "Why are you feeling like this?" and then I remember, "Oh Yeah, I'm worried about Gavin's seizures, etc." I hate having this 'cloud' constantly hanging over me! I don't think I've felt totally carefree since the day he was born. You know how you get that absolute feeling of joy when you hear a certain song, smell the Spring air, or whatever it might be for you? Well, I still have those feelings, but it's always smothered by my worries for Gavin. I pray about this often! The closest I've come to being able to sigh and take a deep breath is when I pray or read the Bible. Sometimes I don't even feel the tension, but then I read something or pray and I feel so much lighter! It amazes me every time! When I said that I worry less than before it's because I have truely found the knowledge that I'm not the one in control and even my worst fear (That being, the fear of having a child who is very ill), can be conquered by God's grace! It's difficult, but not impossibe as I thought it would be before I had Gavin. So, would I go back and change having Gavin? Not on your life! I'm greatful for this knowledge and all that I've learned! I read in a devotional today, "I will smile, knowing that the weight of the world is not on my shoulders; it's on God's." In this book I have a note as my bookmark. It was given to us by friends from church. All it reads is "You are not alone." I feel such peace every time I read this! I'm not alone! God is here. Always. This is what I've most learned from having Gavin in our lives. What a blessing this feeling and Gavin are!
On a side note, I want to thank so many of you who sent me birthday greetings by way of: cards, phone messages and even flowers! How thoughtful of you! Not only am I not alone with God's love, but he has blessed me with so many like you! Thankyou!
Love, Alicia and Family
Tuesday, January 1, 2008
We had a CRABBY New Year's Eve.....Literally!
December 31st is also Nolan's birthday! His choice for his birthday dinner was crab legs! I've decided he's an expensive child and not the typical 8 year old! We had lots of fun though! It was nice starting the new year off with our whole family home TOGETHER, including Grandma Doty! Last year we were separated with Gavin in the hospital. We were thankful to be home and healthy!
Gavin has been making a little more progress as well! He's 'talking' to us even more and he seems to have more strength! He's attempting to sit up while being held on my lap. This is a very small step, but a good one! His head and neck strength are still very poor, but at least he's trying!
I recently read a quote from a devotional book for caregivers that was given to us. "Joy in caregiving, like fine jewelry, usually comes in a small box." I felt this really sums up joys found when having to care for someone who is chronically ill. It is A LOT of work and some days it's hard to want to even get up in the morning, thinking about all the day entails, but when the joy comes it's abounding! I think many of you might agree with me that being a parent is often a thankless, yet very rewarding job! When you care for a child who has special needs, often it's even more thankless, but when those rewards come...WOW! With our other boys it's a lot of work, but they say something funny, or give us a smile, an "I love you", or a hug. This makes the 'work' all 'worth' it! With Gavin, somedays it just feels like 'work'. He can't smile. He can't talk. He can't do what the average 1 year old does. So, sometimes it feels like the joy isn't there. But, like getting a "small box with fine jewelry", when you do get it, it's WONDERFUL! The small box usually holds something very precious and unforgettable! We don't get those small boxes very often, but when we do get them it means so much more to us! This is how it is for me with Gavin. He requires a lot, but when he 'gives' it surely isn't taken for granted! We may have had to wait a LONG time for things, but we sure do rejoice when they happen! He may not be able to smile and make us laugh, but he has his own way of showing affection towards us. Often times throughout each day while I am holding him on my lap with him facing out he wiggles and 'complains' and digs his feet into my legs trying to get his face closer to mine. Then he arches his back and leans his head back until our faces are touching...and he settles right down...then he licks my face! I take this as his way of saying, "I love you and Thank you"! It really touches my heart and brings that joy that I'm talking about! I only hope he knows how much we Love him and are Thankful for him too!
May all of you find the little joys in life during this new year! Our prayer is that you will see God's blessing in all that this year brings to you and that you have a blessed 2008! Thanks for your continued prayers and support!
Love, Alicia and Family
P.S. There are some new pictures on Gavin's carepage as well!