Pictures, Six-Month Visit

This is Jonathan at bathtime. Look at his scar - it is healing so nicely!
This is Jackson with Noah. Noah is the son of my best friend growing up. Her mom and my mom were friends while they were pregnant with us, too!
Jackson out on the beach with his "cheese" smile.
Daddy and Jack at the beach.
Jackson and Jonathan with their cousins, Emma and Eric, wearing Nana-designed outfits.
Jonathan and Jackson at the beach.
Jackson put a "hat" on Jonathan this morning at breakfast. When Jackson was little, his first joke was in the car. One day I looked in the back seat and he had a cup on his head and he said, "Hat" and just grinned! He is now passing the joke on to Jonathan.

At Jonathan's six-month visit today, he weighed in at 13 pounds, three ounces and is now 25 inches long. He is still in the third and fifth percentiles in regard to typcial weight and length. However, he is in the 25th and 90th percentiles on the Down Syndrome growth chart. So, he is doing just fine!

Yesterday was Jonathan's last day at the Bell Center for this school year. The therapists again raved about his development. One therapist had not seen him before and asked, "Is he really only six months old?" She told me, from her perspective, that he was doing great. We'll take it!

Have a great Memorial Day,
Julie:)

juliewarren@mindspring.com

Visits, Vacation, Doctor, Thoughts

As I sit here to update you all, Jamie is at work, Jackson is snoozing in his room, and Jonathan is on the floor, doing raspberries, rolling, and scooting/crawling. All is well in my world at this moment.

We saw my parents a couple of weeks ago. It was a great visit. My sister came to stay here with us for a week. I was able to cram in tons of appointments and errands and was so grateful for the help. We went to the beach last week with Jamie's family - his parents, his sister and her husband and children. Jackson and Jonathan did not sleep well while we were there but we had a wonderful time. We got sun, ate constantly, and relaxed.

I took Jonathan to an opthamologist today to have his vision checked. Jackson went with us. He was fairly well-behaved. "Toy Story" was piped into the room which he found thrilling. We are trying to phase out movies like that because he is starting to mimic fight scenes and the cynical banter. However, I was grateful for the distraction! The doctor promised him some treats and he seemed disappointed and, upon receiving a sticker, asked where the suckers were.:) Children with Down Syndrome are more likely to have vision problems so it is wise to stay on top of it. Jonathan's vision was 20/20 today although it seems he is tending toward nearsightedness and will probably need glasses in a few years. The doctor said that his eyes look 100% healthy with the exception of his blocked tear ducts. His eyes tear a lot and get kind of gooey from a back-up in the channel that should drain his tears. He has had this since birth and it seems to be getting better. Hopefully, it will correct itself. If not, he can have a procedure done at 12 months that should clear it up.

It is hard to say how we are doing these days. Some days are wonderful and others are really tough. I am really speaking for myself rather than Jamie. I find that the days I dwell on a blurry past or unknown future combined with filling in the blanks with my imagination, I can develope quite a case of emotional upheaval. At the beach last week, I was able to have a really meaningful conversation with my mother-in-law despite children shouting, snatching, crying, etc. so it is significant that it stuck with me. It is just what I needed to hear.

1 - God is more concerned with my character than my circumstances. What we put so much emphasis on is not necessarily what He finds important. I felt immediate relief upon hearing this from Betty. I don't need to cling to my circumstances and rant and rail about how unfair they are or how tough they are. He knows but He is more concerned with my response.

2 - I put too much stock in lies from Satan. I have noticed recently that a lot of my unhappiness stems from believing lies...

a. Weight is very important.
b. You need to have a perfectly clean house if you stay at home because... you stay at home. Otherwise people will
think you sit around and eat candy and watch TV.:)
c. What others think is very important.
d. Your children should behave in a way others find appropriate even if those people don't know what has transpired that day.
e. If someone has hurt you in the past, keep your distance from them and don't let them close. They will only hurt
you again.
f. The way to please God is to strive for perfection on your own strength. He will be impressed... as will others.
g. You must be tough. Don't ask for help - it suggests weakness.

I put so much pressure on myself to be perfect and to be tough. The last six months have really taken a toll on me and hammered me in these areas. I have been struggling in these areas for far longer than Jonathan has been alive but the circumstances under which he was born have really highlighted my struggles and have given me a perspective I might have been lacking the rest of my life had he not been born with his condition.

3 - There is no magic pill. I know this but I forget and find myself trying to analyze my life to death, convinced I will find the one thing that will take away the pain. I will never find the formula to make everything perfect in my life. I will struggle on a daily basis for the rest of my life. Being a Christian does not make my life easier - sometimes I think it is tougher. Being a Christian means recognizing that I am powerless and I need help. I have worked my whole life not to need God and I never knew it. He has allowed me to be brought to this place where I need help and I cannot deny it. I cannot go it alone. It is not about more scripture memory, more Bible studies, better behavior, etc. It is about committing to surrendering my will to His on a daily basis.

4 - It is a daily choice. Not only is there no magic pill, but it is a daily choice to choose to allow the Holy Spirit to live through me. I must choose to live for Him rather than myself. Again, I find a sense of peace in that. I don't have to live for me anymore. I don't need to be living in a constant state of self-preservation. I can let go of hurts and disappointments, focusing on living for Him instead of myself. However, I have to commit to it every day because complete healing will not occur with one prayer. In fact, I won't find complete peace until I get to heaven. I cannot do it alone. I thought I could keep searching until one day I would be one of those people that you read about - those people that are Christians and seem perfectly at peace all the time, who don't appear to struggle with anything. That is a myth! Maybe those people exist but I don't think so. What is probably more accurate is that those people get up every morning, recognize they are powerless, pray intensely for help, and surrender their own desires on a daily basis.

Thanks for following our story. I will post pictures when I find them. We had some great ones from the beach!

Julie

juliewarren@mindspring.com

Jesus Loves Me

Sunday morning I woke up to the sound of "Jesus Loves Me." Jackson's room is right above ours and he was singing to himself. There is nothing like the sound of a child's voice, singing praises. He constantly reminds me to have the faith of a child because I complicate things so much with my analytical brain. He also walks around the house singing, "Jesus, you're my star, my best friend, you're my super hero." He must have learned that one at Mothers' Morning Out because I have never heard it. Again, a reminder from a child of where my focus should be. Yesterday, he took Jonathan's arms, raised them up in the air, and said, "Praise the Lord! Mommy, I just helped Jonathan praise the Lord!" Wow. From the lips of children come the most brilliant things.

Wednesday, Jonathan and I attended Farm Day for the Bell Center. It was a day out at the farm of a retired PT. I knew Jonathan may not remember the animals but I am always on the prowl for new friends, positive people to interact with, who can provide encouragement. It proved to be a good move. I had had some dark days and needed some positive feedback. Tina, another mother, introduced me to her son with DS, Charlie. Charlie is 20 months old and just as cute as he could be. He was wearing a little smocked outfit and had a cute haircut. He could not speak well or walk but was on his way to both. He could sign what he wanted to communicate. It is amazing how different that makes someone appear. If they cannot talk, your perception is so different. The fact that he could communicate really made a difference in the way I perceived his functionality.

Charlie's mom reminded me not to look into the future, which is what I had been doing over the past several days. It always gets me down. The problem with it is that I don't know the future and so my imagination runs wild. It is where Satan gets a foothold in my life everytime. She also said that it is not even accurate to assume Jonathan is going to be where current DS twenty-somethings and up are because most of them have not had the early intervention our kids are getting now. She said she met a young adult with DS the other day and he was entertaining, silly, and very concerned about his hair and clothes. They said he was so refreshing and such an positive picture.

We did not have the Bell Center on Tuesday but our PT from the government organization, Jane, came. She worked with Jonathan and told me at the end that she was very impressed with his progress. Jonathan is rolling - a lot. You put him down and he rolls across the room. When he is placed on the floor, he lies on his tummy and looks around. He is getting very strong. He likes to roll left rather than right. If you push him to roll right, he resists. It must not be as comfortable yet that demonstrates his strength because he is pushing against you. He is also scooting. This child is so determined and works so hard. I am so proud for him! He is doing raspberries with his mouth and has been for a couple of months. He will catch my eye, smile, and start talking. I love it! He is batting at toys and figuring out how to get them to work. He pushed a truck yesterday and I was thrilled. Amazing how excited you get over the smallest things.

Yesterday Jonathan worked with Holley, his PT at the Bell Center. She worked him hard and also commented on his strength and progress. She wants us to start working on helping him to roll to a sitting position. He can already sit well with help, without toddling. She showed me ways to help him prop sit and then to roll to a sitting position. I am having to do what they show me and take notes now so I don't forget what to do.

Jackson is such an asset to Jonathan and I am sure the reverse is true. I could not ask for a more loving relationship. Jackson wants to kiss him, hug him, and hold him all the time. He likes to feed him with a bottle, too.

I talked to a mother this week who found out that she is having a girl who tested positive for DS. I was glad that I could "pay it forward" and encourage her, empathize, and offer advice. I am grateful for the opportunity to help others in this way.

Please pray for our continued good health. Jonathan is over 12 pounds now - pray he continues to grow. Pray that his ear canals are not blocked so he can hear sounds. Blocked ear canals will stunt his ability to speak well and to develop cognitively. Pray for my outlook and that I have a day-to-day attitude rather than venturing to an imagined future. Pray we are positive.

Thank you for your prayers,
Julie:)