Milestones

I have two pages left in Justin's baby book that I haven't completed yet. One is his tooth chart, because of my little oops with which teeth were coming in. I have a new chart now and I hope to finish it soon. The other one is his milestones page. Of course I have to wait for him to achieve the milestones before I can include them in the chart: rolling over, walking, saying his first word, first haircut. He has most of them but those two biggies: walking and talking. The cute scrapbooking set I bought has adorable stickers to decorate the pages to mark those momentous occasions, but I can't use them yet. I don't want the book to linger and have pictures of him at two or three when he reaches those milestones. And I don't feel bad that he isn't there yet (Ok, my BACK feels bad that he's not there yet, but that's it...) but I feel like there have been so many milestones that he has reached that deserve recognition in his book.

It was the most incredibly liberating feeling the first time we went out to eat as a family and I did not take any special food for Justin. Nothing. His bib and drinking cup, and that's it. We went to a Mexican restaurant and I knew that if nothing else he would eat at least one of the kinds of beans we would be served. I felt like the biggest weight was lifted off my shoulders knowing we could decide on a whim to go out to eat and I wouldn't have to run to a grocery store to buy a jar of food for Justin. Justin ate 2 plates full of refried beans and he loved every minute of it. The next day was not so good when they had to come out, but that's another story.

And his first kid's meal at Chick-fil-A. He ate all the chicken nuggets and a lot of the french fries. Without much help. A major milestone for me!

One of my biggest problems is that Justin cannot eat in the car by himself. I know that's kind of bad, since I know some of my friends don't allow food to be eaten in their cars at all, but there are times that there is just no time to eat while sitting at the table. So, the first time Justin ate french fries that Travis handed him it was awesome. Too cool! Justin did so well eating them and I felt relieved. Another baby step, but significant.

And the cupcake incident that I related last week. No words, but communication! That's just as important to me. His ability to point is crucial too. He can point to what he wants and he is very good at shaking his head "no" when we get it wrong, and fortunately he is still very patient with us when we do.

The first time he held on when I was holding him. Hugging me so tightly I thought my heart would melt. That was a moment I want recorded on paper the same way it's imprinted on my heart. Now it's the way when he's sitting on my lap facing me that he slides his arms under mine and around and hugs me, laying his head on my chest and looking up at me with those huge blue eyes. That's worth more than a thousand steps to me right now.

Justin's book is filled with stories of heart surgery, pictures of him tucked into the corner of the couch, and the moments of pure joy when we felt like the family God meant us to be. I might leave room for more of the "traditional" milestones, but I think I am going to include some of my own. They are what make Justin who he is and that's what I want his book to reflect.

Meat Day Mission and Bulk Cooking

Because status quo is never enough (ha!), I decided to expand the scope of Meat Day four months ago, and add Meat Day Mission. And Erin added bulk cooking this month. BIG learning curve for both, let me tell you!

Meat Day Mission is blessing a friend, neighbor, co-worker, teacher, or whomever, with a casserole from the Meat Day group. We all submit a name of someone who would be helped by having a meal prepared for them and then after Meat Day we meet and cook together. Anyone in the meat group can contribute a few dollars toward the ingredients. After the meals are assembled we pray over them. Then the meal is delivered along with a card signed by the group. It really makes the difference for someone who feels like things are really out of control. We have provided casseroles for people fighting cancer, who those who have lost loved ones, some who have added a family member, and many who have lost jobs. The most powerful part of MDM (Meat Day Mission) is the prayer. Knowing that you are covered in prayer gives strength and confidence in completely exciting ways! The first time we heard reports like, "Wow! That was the best baked ziti ever!" The things God can do with noodles and Ragu!

And this month we added bulk cooking! We found 10 people who wanted to do a meal exchange and we all prepared 10 identical dishes to trade for 10 different ones from the other participants. Not a new concept of course, but this was the first time with this group and we did great! Some people cooked at home and brought their food, others met with us as we prepared MDM meals, and others just sent their meals and will pick theirs up at another time. We set up tables and divided them with tape and labeled them so we could have designated areas to gather and collect all the meals. We got lots of yummy food: bistro burgers, beef stroganoff, mexican meatloaf, taco soup, poppy seed chicken, spaghetti and meatballs, alfredo chicken, tortellini soup, mexican layered casserole, tortilla soup, and pizza pasta casserole. I am excited because now my family has some different meals to try, not just the same ones I prepare and freeze every Meat Day. It took much less thought to prepare 10 of the same thing rather than the 10 different things I usually do! We had a few glitches, like some of the "topping" ingredients got left at home and will need to be distributed later, but all in all, a very rewarding day. All the stress was for naught!

The Softer Side of Meat Day

Meat Day was yesterday and it always requires a dedicated team of workers to make it happen. My faithful team usually consists of my mother and my friends Tonya and Erin. Three of us work, and one is on child duty. Occasionally, Randy is able to help when he is off from work. This was one of those times that it worked out for him to be with us. And unfortunately my mom couldn't make it this month, so Randy was pressed into child care duty. He was truly amazing!

The weather was beautiful, and it always helps us when the kids aren't underfoot, so he took them all, minus Asher (Erin's son) who was napping, for a very long walk. Travis practiced riding his bike and Alivia danced and played in the warm winter sun! They went to the park, and then they played bubbles and of course did some digging in Travis' flower bed. The biggest treat was having a picnic outside on the driveway. I have to ask what Erin is bringing for Alivia's lunch, because that is what Travis will want! I love that Travis and Alivia play so well together, and they look forward to being together. It's a near tragedy when it's time to go home! The kids make Meat Day fun too. The stories they share and the games they invent are worth more than the money we save from buying in bulk. That is part of what makes Meat Day special for me.

Next time will be our three year "Meativersary". The time has flown by! Both Erin and I have had second children since Meat Day began, and we have added and lost a couple of different workers. Meat Day has grown and changed but when it comes right down to it, it's still just bonding over raw meat!

It Took a Cupcake

Last week I made some cupcakes for the boys and they ate them for desert after lunch one day. Justin, my speed eater, finished his first and was sitting on my lap watching Travis eat his. Travis savors his food, and he was enjoying all aspects of his cupcake, when Justin started reaching for his cupcake and made the sign language sign for more (tapping all fingers together). I told him, "No, you ate your cupcake already, that's Travis'." And he made the sign for "more" and tapped even faster! It was the first time he did it completely unprompted! All it took was a cupcake!

A Difficult Lesson to Learn

I went to a seminar at the DSAH this morning on practical solutions for educating students with Down syndrome. I went to this event without Randy, and I so wish he could have come with me! The DSAH brought a speaker from Kansas City, Bridget Murphy, whose son, Jack, is 18 years old and prepared to graduate from high school this spring. This was very different from other events I have attended, particularly educational events, because so often it's a doctor telling people what studies have shown you should do and what will work well. Or it's a parent just saying that it's okay to feel what you're feeling, it's tough, and we're all in this together. This was a parent saying, "I have been there, and I didn't get it right all the time. This is what we found works well, and this is what you might want to try." It was great because it really spoke to families of all ages. She took very specific questions from parents struggling with particular situations, and she had some great ideas to try. I think she touched everyone in some way in the place they were at. She asked questions and she allowed people to admit failures. Heads nodded throughout the entire seminar. She said, "Doctors give you the news that your baby has DS, and they list the heart defects, intestinal issues, and developmental delays your child will face, but they do not tell you that your child will never want to leave the playground!" So many things that aren't published in books, but things that can only be gleaned from talking with other parents.

I was really impressed by many of the things that I have already learned from just regular parenting books, but that need to be tweaked and adapted for children with DS. For example, when kids throw tantrums it is best to ignore them because they are often seeking attention. Well, kids with DS are escape artists, and if you go too far away, even to another room in the house, you might find them gone. But cell phones have helped her solve some of the problems. She can still be near enough to prevent escape, but the cell phone (on a fake call!) allows her to divert attention and often stops the behavior!

She told some amazing stories of escaping (which she calls eloping, because when you elope you sneak away), letting kids deal with natural consequences, and fostering independence. Her son is very independent: he holds a job at a local restaurant and bring in more business than any other employee in any of the restaurants in the chain, he stays home by himself and he goes on dates about three nights a week!

It was a good lesson, but so hard for me! I love having all the information, but knowing it means I should do something about it. Repetition is one of the words I hear most frequently. Twelve to fifteen times for most children to learn something. I can understand that with a skill or task, but she was referring to things like not running out of the room without permission or getting in line when the recess bell rings. I couldn't help but break down in the car on the way home, again, and ask God if I am really the person for this job. Am I prepared for the time and energy this will take? What about Travis? What about Randy? And selfishly, what about me? I do not feel one ounce of prerequisite ability to do this job that God has given to Randy and me with full confidence. I understand about daily bread, and the need to return every day to the source of all strength and power, but sometimes the tides come too fast and too continuously for me to bear. Truly, is here ever a time that I, or any other person, would have said, "Okay Lord, I know enough, I am fully prepared for a child with DS. Bring it on! I know I can do it!" Never. That's not what God expects or wants.


Bridget Murphy pounded home the reality that whatever behavior issues are not dealt with now only become bigger and stronger as the child grows. Is my time running out? Will I still be influential in the kids' lives in five years? twenty years? Knowing what is to come brings that huge lump into my throat and I feel every in- you can imagine: in-capable, in-adequate, in-sufficient. It reminded me that I was supposed to have learned this lesson during surgery. Randy and I are not doing this alone. We have a tremendous wealth of resources! Why does my mind go blank and all I can see is the huge wall in front of me?

I suppose sometimes I just need a good cry (which I wouldn't recommend while driving) because I do eventually seem to come out better for it on the other side. There isn't always a moral, or an "ah-hah!" moment, but more often it's a quiet reminder that God will always be exactly what he promised he would be and do exactly what he promised he would do. Somehow, my drive began and ended with the same worship song in my head. But somehow it seemed bigger the second time.

Randy's Theory on our Sleep Issues

We all took a nap yesterday. It was raining, and I was tired. It is a treat for Travis to have me nap with him. We usually nap together after I have worked a red eye flight. He knows that Mommy will probably sleep longer than he will, and he is allowed to get out of bed and go find Daddy after he wakes up and leave me to sleep longer. He lets me get out my eye shades and ear plugs, and we are good to go. Once we had just laid down and he slowly slid out of the other side of the bed. He said he had napped long enough. Nice try, mister!

But yesterday it was just because. We all laid down and slept for three hours, an unheard of length of time! Well, I woke up and slowly crept towards the door. Travis sat up instantaneously. "I am done sleeping too, mommy!" Okay, so we went and sat in the rocking chair in the living room and he promptly feel asleep in my lap. Justin then woke up about 5 minutes later and I had to wake Travis to get Justin.

So I tell this all to Randy and he says that he thinks that the boys have a motion detector going on me. When I start moving, they wake up. That's why they wake up early in the morning, because I try to get up before they do to have devotionals and get dressed and organized for the day. His theory says that there is no way I can do all I want to do because I set off their motion sensors and they think that it's time to wake up.

So my question is, how do I turn it off??

Can You Give Your Child a Complex?

Admittedly, I am a bit of a neat freak. And a bit of a clean freak. But now I am worried that I am giving it to Travis! I appreciate the clean part, but not the freak part.


We were at Wal-mart the other day and I was looking at sponges and Travis asked to get his own sponge- orange with dots- to add to his collection of cleaning supplies. He already has a purple sponge, a cleaning cloth, and a spray bottle. Now he has his own cleaning bin for all his supplies. And yesterday he asked to clean the counter in our bathroom. Not a problem. When I came back he had taken everything off the counter so he could really clean it. He had put hand soap on the sponge and there were bubbles everywhere by the time he had finished. But it was clean!


And then in the afternoon he thought the kitchen floor looked dirty and he needed to mop. I was trying to make dinner and I didn't think it would help me to have a wet floor as I attempted to assemble a meal, so I said I didn't think it was the right time. He was very upset and came up with all sorts of ways he thought it would be okay, and the one I finally accepted was that he mop the back hall and close the door so Justin couldn't get in the wet floor. He jumped up and down with glee when I gave him the okay. I only gave him a few inches of water in the bucket and it was all gone by the time he was done, and the floor was an inch deep with water. But he was SO proud of himself. He told Randy what he had done when he arrived from work, and he also told him that it was now HIS job to mop and clean the counters, all by himself. Mommy said. Hmmmm, not quite. But this morning he was ready to clean the counters again and mop the floor. I convinced him that the floor would be okay for another day, but he cleaned the counter quite well. Should we start saving for therapy?