Monday, July 28, 2008

Nolan's Journal

So often I find myself worried about how Jacob, Nolan and Caleb may be affected by having Gavin as a brother. They all seem to go with the flow and are such great big brothers to him, but I wonder sometimes how they are feeling and handling it all deep down. Jacob talks about his feelings about Gavin quite often and Caleb was fairly young when Gavin was born, so he may just think that this is just a way of life. But Nolan is a thinker and keeps a lot of his feelings to himself. I was able to gain some insight on what goes on in his inquisitive little mind recently. This year Nolan's class worked on journals. The following is one of the entries he wrote. It is about one of Gavin's many trips to the hospital. (Note: I've corrected the spelling, although it is more cute to read it his way!)

Gavin Gets Dehydrated (originally spelled dihistrated :) )

Chapter 1:

Have you ever had a baby that had Down syndrome? Our baby, Gavin, has Down syndrome. When a baby has Down syndrome, it is hard for them to learn things. It is bad when a Down syndrome baby gets dehydrated. Gavin got dehydrated. He had to to go to the emergency room.

Chapter 2:

At first mom was with Gavin in the hospital. But Gavin wasn't doing so good. So they had to bring him to the emergency room. Mom came home and told us that Gavin was in the emergency room. I was scared, nervous and worried. A day after that we went to the hospital. We went in an elevator to floor 2. We went in the parking lot. There was a door to the emergency room. It was so scary that my teeth were chattering. When we went in the emergency room there was a place where you would tell a nurse where you were going. Then we would go and wait for a nurse to bring you to where you wanted to go. There was a big white hallway with pictures on the white walls. We found the room next to the place. I saw the computer that had the heart rate on it. It had squiggles to tell how his heart was doing. Then we had to move and we went further down the hall that went left. The floor was slanted down. Then it turned right to opened doors and then turned sharply into the room. The pediasure that he eats was going through a tube into his mouth, but then they put it through his belly. God helped Gavin to get out of the hospital. Because the next day he was back at our house.

While the events he described are accurate, the timing of when and how they occured were a little different, but obviously he was paying attention to a lot and was concerned about what was happening. It makes me sad to know that he was scared during this time and that he has had to go through many days of visiting his brother in the hospital. It also makes me happy because he obviously knows that God is caring for Gavin and us through all of this!

I know all of this has been hard for my mature mind to grasp, so it must be tremendously hard for a child to understand! But, I know that I have learned A LOT and grown a lot in my faith and even as a person, and I pray that the same holds true for our children. I'm quite sure that having an outlet like writing helped Nolan, so I am thankful that they had this opportunity this year. I'm also quite sure that the knowledge of God's love and purpose for us all has helped our boys deal with this and that He will sufficiently supply all that we will ever stand in need of! And, for this I am especially thankful!

"Not that we are sufficient of ourselves to think of anything as being from ourselves, but our sufficiency is from God." 2 Corinthians 3:5

Thursday, July 17, 2008

I finally caught one!

Joel's mom and I were just talking today about how stingy Gavin can be with his smiles and then when he's giving them out, it's impossible to get a picture of him giving one! Well, he must have heard us talking and was feeling generous, because I finally got a couple of them on camera! Yahoo!

........................ "I'm happy, but bored. Oh wait.....I have an idea!" .................

.............................. "I'll just take my glasses off for something to do!"................

..................................................."OK, Now What?!" .......................................

................................................"Oh Yeah!.....Celebrate!"........................

Isn't he precious?!!

I've added a fun thing to the sidebar, a guestbook, that you can add a picture of yourself to and where you are from! Let us know you've visited!

I've also added a couple of other family's sites to visit to the sidebar. One is a family with an amazing little miracle named Annabel, born with Trisomy 18. Their site is called "By God's Grace." Another is of a family with an adorable little guy named Tucker, who was born with heart defects and suffered a stroke like Gavin did. There is another one that you'll have to go to to see, and type in coopertrooper as the carepage name. Cooper was also born with heart defects and suffered a stroke. These families have been going through a lot and I'm sure could use your prayers! So, visit their sites and give them some support! I ask that you visit Abigail's "Life song" as well. Abby is suffering from seizures, and from personal experience, I know how difficult it can be to watch your child having them! So, send out some prayers for Abby and her family too please! I know how much this means when you are facing uncertainty!

Have a great day!

"This is the day the Lord has made; We will rejoice and be glad in it." Psalm 118:24

Monday, July 14, 2008

Faith's Foundation

Somedays having a child with special needs can be overwhelming. I'm thankful to say that today is not one of these days, but there are days when I feel like I'm walking this road all alone and everything seems so uncertain. At these times I feel almost sufficated by my fears. I fear the future. I fear when the next seizure may come on. I fear when the next hospitalization may occur. I fear that Gavin's leaking heart may, all of a sudden, not be able to keep up with all that his body demands. I fear what we will have to do when we are no longer able to pick him up and carry him around. I fear. I HATE days like these! I hate that I let my mind go wandering and that I let it bring me down.

Last week we were reading from Hebrews 11, at dinner time. I gained a whole lot of perspective from this chapter in the Bible. It talks about how, by faith we understand. This life's road for many is complicated and it's so hard to understand sometimes! By reading these verses it helped me to realize that we aren't really supposed to understand. We are to just have faith in God's word, love and plan for us all. That's questions thinking that we can control our situation......Just have faith in HIM!

In Hebrews 11 it talks of those who kept their faith in God, even when they didn't understand why or want to do what was asked of them. These men of God just had faith in Him! "By faith, Noah, being warned of things not yet seen, moved with godly fear, prepared an ark for the saving of his household." (11:7) "By faith Abraham obeyed when he was called to go out to the place which he would receive as an inheritance." (11:8) "By faith Sarah herself also received strength to conceive seed, and she bore a child when she was past the age, because she judged Him faithful who had promised." (11:11) "By faith Abraham, when he was tested, offered up Isaac, and he who received the promises offered up his only begotten son." (11:17) "By faith Moses, when he was born, was hidden three months by his parents, because they saw he was a beautiful child; and they were not afraid of the king's command." (11:23) "By faith Moses, when he became of age, refused to be called the son of Pharoh's daughter, choosing rather to suffer affliction with the people of God than to enjoy the passing pleasures of sin, esteeming the reproach of Christ greater riches than the treasures in Egypt; for he looked to the reward." (11:24-26) And, the list goes on.....

These stories are in the Bible for us to learn from and to gain comfort from. Like I said, some days are hard! I learn of so many children and families suffering from uncertainty, illness, just doesn't make sense with our limited brain's capacity! But, when I look at it through the eyes of God and His message to me through the Bible, it ALL makes sense! I am so thankful for this clarity, as it's the only way to truly get past suffering and be able to continue the road God has set out before us! "Therefore we also, since we are surrounded by so great a cloud of witnesses, let us lay aside every weight, and the sin which so easily ensnares us, and let us run with endurance the race that is set before us." (Hebrews 12:1)

I was also reminded of the awesomeness of having faith in God, when Jacob quoted to us that same night at dinner; "that if we had just an ounce of faith or as much faith as a mustard seed, we could move a mountain!" He was talking of what Jesus said to the disciples in Matthew 17:20. Imagine that kind of faith?! The point of all of this is that we should put our faith and trust only in the Lord above and He will take care of the rest!

We sang the following song last week in church and, it too, gave me comfort. I pray that it may comfort you as well!

How firm a foundation, ye saints of the Lord,
Is laid for your faith in His excellent Word!
What more can He say than to you He hath said,
You, who unto Jesus for refuge have fled?

In every condition, in sickness, in health;
In poverty’s vale, or abounding in wealth;
At home and abroad, on the land, on the sea,
As thy days may demand, shall thy strength ever be.

Fear not, I am with thee, O be not dismayed,
For I am thy God and will still give thee aid;
I’ll strengthen and help thee, and cause thee to stand
Upheld by My righteous, omnipotent hand.

When through the deep waters I call thee to go,
The rivers of woe shall not thee overflow;
For I will be with thee, thy troubles to bless,
And sanctify to thee thy deepest distress.

When through fiery trials thy pathways shall lie,
My grace, all sufficient, shall be thy supply;
The flame shall not hurt thee; I only design
Thy dross to consume, and thy gold to refine.

Even down to old age all My people shall prove
My sovereign, eternal, unchangeable love;
And when hoary hairs shall their temples adorn,
Like lambs they shall still in My bosom be borne.

The soul that on Jesus has leaned for repose,
I will not, I will not desert to its foes;
That soul, though all hell should endeavor to shake,
I’ll never, no never, no never forsake.
"Now faith is the substance of things hoped for, the evidence of things not seen." Hebrews 11:1

Saturday, July 5, 2008

Proud to be an American!

Thank You Lord for blessing us with a country where we have freedom!
Thank you to those who fought for our freedom!
Lord, Please be with those who are fighting to free others not as blessed as we are.
Lord, May our country always look to You and not forget how blessed we are! Amen!

Friday, July 4, 2008

Happy 4th of July!

"The Lord by wisdom founded the earth; By understanding He established the heavens." Proverbs 3:19

"You shall love your neighbor as yourself." Matthew 19:19

Tuesday, July 1, 2008

Gavin is more than Down syndrome

This past weekend my mom and I took the boys to a Whitecaps baseball game. We had been given tickets to go to the game by the West Michigan Down syndrome Association. Someone had donated the tickets to the association and the boys were excited to go, especially since it was Star Wars night at the ballpark! We had lots of fun, but I came away feeling quite sad. We sat near 4 other children with Down syndrome. They all were about 4-5 years of age. They were all just adorable! I found myself watching them more than the game. I just took in ALL that they were doing and COULD do! It broke my heart watching them because it made me realize, even more, what we will never see with Gavin. I really wanted to tell these families how blessed they were to have their child with Down syndrome and that they should feel blessed that they were doing so well. I didn't, but I thought about it.

So often I think back to the days when Gavin was born. When I was pregnant with him, I knew that there was something wrong. I told my doctor this and I told Joel this. They just thought I was crazy, I think. But, for some reason, I just knew that Gavin would be born with a health issue. We had an ultrasound, but nothing was found to be abnormal. I believe God gave me this feeling so that I could be somewhat prepared for what was to come. Driving to the hospital for the delivery I was very calm, and never felt excitement. I don't really know how to explain it. After he was born he had difficulty breathing. Before they took him to the NICU, they placed him in my arms and told us that they thought that he had Down syndrome. I remember just staring at him and having a feeling of relief in some way. He just looked so familiar to me, like this is what I expected or something. I loved him before I had him, but at that moment I fell deeper in love.

Later that evening a doctor came to tell us that they had done an echo on his heart and that he had heart defects. The first thing out of my mouth was, "What's his life expectancy?" I didn't really care that he had Down syndrome, but I really wanted him to live! I had NO idea what would be in store for our family that day, but I knew that we were going to fight with this little guy! Needless to say, we have had quite an adventurous journey with Gavin, but one SO WORTH IT! I remember in the days after his birth having a couple of family members and friends saying that they were more upset or would be more upset about the fact that he was born with Down syndrome than the fact that he had heart defects. I thought that they were nuts and maybe even a little bit too vain or something. I felt bad thinking this, but it also made me kind of angry. Why should they care if he had Down syndrome? What's the big deal about that?! People with Down syndrome live wonderful lives! They are ADORABLE, if you ask me and they teach so much to others. I thought this long before I had Gavin, so it's not just me being biased. Anyway, Was I happy right away that my son was born with Down syndrome? NO, but I knew it would be O.K. and that there was a reason for it. But, for others to be more concerned with his Down syndrome than his heart defects was just ridiculous to me!

Looking back to those days now, especially after seeing some precious children with Down syndrome this weekend, makes me feel sad. What I wouldn't give to have had a child with JUST Down syndrome! We would not have spent over 6 months in the hospital. Gavin would not have had a stroke. Gavin would most likely be crawling around, eating, laughing, talking.....!

Jacob really noticed these children at the game as well. He said to me, "You know that boy sitting next to me? He talked so well! He was funny! I bet he goes to college someday!" He was really impressed! I was too! I just wish others could see Down syndrome like Jacob and I are blessed to see it! What a blessing these humans are! I pray that people can see this more clearly by knowing Gavin and all that he has been through! I pray that others can see just how blessed they are to have a child in their lives with Down syndrome or some other genetic abnormality, and that they can look at them as being MORE than what they happen to HAVE! I'd take Down syndrome any day! That's what I would tell someone who is blessed with this God given gift and opportunity! I'd also tell them to Take it!, Enjoy it!, Learn from it! And, if I remember correctly, as my sister's husband said after Gavin was born: "Think of it as a dare to be great situation!" This is how I hope others can look at having a very special child in their lives!

"...that the God of our Lord Jesus Christ,...may give you the spirit of wisdom and revelation in the knowledge of Him, the eyes of your understanding being enlightened; that you may know what is the hope of His calling, what are the riches of the glory of His inheritance in the saints, and what is the exceeding greatness of His power toward us who believe, according to the working of His mighty power." Ephesians 1:17-19