Thursday, January 28, 2010
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.
Saturday, January 23, 2010
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 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!
Friday, January 22, 2010
Saturday, January 16, 2010
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.
Friday, January 15, 2010
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??
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?
Tuesday, January 12, 2010
There is no need for Justin to walk for them to be able to play. Seeing them play together has made me think back over all the ways they have been connecting over the nearly two years that they have been brothers. Justin first starting watching Travis by tracking his movements through his field of vision. Travis began mauling/hugging Justin from the very beginning. He wanted Justin to watch him play trucks and he told me to put Justin, "Right here!" as he slapped the ground. Now he wants to feed him and console him when he cries. We often make "Justin sandwiches" when we hug, or we all "pile on" Justin. I can carry "two boys in my two arms"- Travis' words. (Admittedly, getting harder by the day...) I will say that there is a little jealousy over toys now that Justin can crawl to go after Travis' toys, but so far there have been very few battles over mommy or daddy. They both seem to know when the other needs mommy, and the other acquiesces. This was the first time Travis shared his toys with Justin.
Travis gave one of his dolls to Justin, while he kept the other in his lap. I remember being touched to see how good that made Travis feel. Of course, I know they are still young, and Travis doesn't know peer pressure yet, but I am reveling in the forming on a tight family bond for future times when those bonds are tested and stretched. A couple of weeks ago I said something that made Travis think that we were going to give Justin away, and he got very upset and said that we couldn't do that because Justin was in our family. While I don't ever want Travis to feel like he has to be responsible for Justin in any other way than a brotherly way, I love that he is drawn to that without prompting. Things are hopping here, and I am thrilled at the direction we are headed!
Saturday, January 9, 2010
Heart defects are more common than Down syndrome, according to this book, in about 1-2% of births. Not all require surgery, and not all are severe, but that is a really high percentage! The book recounts how some of the more "simple fixes" were developed, like to fix PDAs and ASD and VSD. And how surgeons first used the heart/lung bypass machine, the discovery that makes open heart surgery even possible. The first "bypasses" were using other live people! So many amazing discoveries that we owe to the bravado and unabashed pride with which we credit many of the best doctors and surgeons. It was hard for me to swallow to think that the attitude of "I am the best, I can do no wrong" actually has helped in the field of medicine. One doctor scheduled two landmark surgeries for the same day thinking that if he attempted only one and it failed, he would never be allowed to try again. But if he tried two and one succeeded, he would be allowed to continue. His first patient died and the second one lived! I was awed to learn that a doctor tested on himself his theory that a catheter could be inserted in a vein in a leg and end up in the heart. He stopped when he felt it touch his heart!
The part that scared me to my core was that Dr. Mee does many surgeries a year to fix "botched" jobs. Some of them were true difficulties that any surgeon would face and have trouble correcting. But others were simple ASDs or Tetralogy of Fallot that should have been straightforward and instead were attempted by an unqualified or ill-prepared surgeon. And what gets me is that the parents are not made aware of their choices or alternatives! When statistics are quoted, a surgeon will quote the very best stats, either national stats or personal stats, whatever will get him the job. When they say that a transplant is the only alternative, they don't explain how involved the life-long care that is required. The book describes a hospital in which the cardiologists stopped referring patients to their own surgeons because of their poor results. One family came to Dr. Mee after a botched job and she said, "I never heard of Dr. Mee. I never knew this was an option." Even in the very toughest cases, like transposition of the great arteries or hypoplastic left-heart syndrome, which are best handled by the best of the best, are being attempted in sub-par hospitals because parents don't know! In the book the author quotes doctors as saying, "It's a crime." Wouldn't you want the best for your child? And yet parents don't even know how to find the best. They aren't told there are surgeons with better results or more experience. A hospital in Michigan said that they get referrals from Cleveland all the time, and yet Cleveland has Dr. Mee, who has been summoned by foreign royalty to operate on their children.
Today there are some defects that are still offered "compassionate care" and death because the surgery, and more often surgeries, are so risky and challenging for even the best surgeons. I am thankful for the positive outcome that we had for Justin, and yet I want everyone who ever plans to have children to read this book just so they know! The risks are high, but when it's a child, and sometimes a baby, a slim chance may be all there is. Please share this information and this book with whomever you think would benefit. I feel like I didn't ask our surgeon the right questions, and I considered myself fairly well-informed. In a pressure situation, with little time for processing, I can't imagine how anyone without advance knowledge could possibly know any better. Prayer is the first and best answer in every situation, and this book makes that abundantly clear to me.
Friday, January 8, 2010
I have to tell you that I am in a bit over my head. Or at least I have been. Today (I know, Friday, what's that all about??) is the first day I feel almost back to normal. Everyone at my house for the holidays got sick, except for me and my brother. I am not sure how my brother avoided it, except for maybe that he didn't stay long enough. But it started with Randy, went through the boys, my sister and brother-in-law, and then my mom. And it finished with a vengeance with my mom. I spent yesterday in the ER with her. She was severely dehydrated and had the end of a virus, beginning of an infection. Whew! You know how days don't go how they are planned? And then with kids there are always the unplanned things that are still somewhat expected? Well, this wasn't on my radar at all. Randy came home last night to the trash that I has taken to the back door at 8 am and still hadn't gotten outside into the can. I have been feeling behind the eight ball, trying to keep my head above water, and any other cliches that cross your mind. My one huge prayer of thanksgiving has been for the stellar immune system I have developed while being a flight attendant. It's kind of like being a kindergarten teacher.
It's the new year, but last year hasn't finished yet with thank-you notes, gift exchanges, remnant decorations and leftover turkey still in the freezer. There is a song by Amy Grant that really says it all. I think it's called something like "In a Little While" or something like that (I am eternally bad with song titles and artists, but lyrics, I can do.) In it she talks about all the things that are happening and how overwhelmed she is and then she gets a letter that reminds her that "in a little while we'll be with the Father (can't you see him smile?) In a little while we'll be home forever. We're just here to learn to love Him; we'll be home, in just a little while."
This Christmas I learned more about how to love Him. And to anticipate what is coming. Hearing it come from Travis' mouth about the angels and wise men and baby Jesus has been like hearing it the first time. And seeing him excited about the gift of a savior. He regularly says, "Mommy, if Jesus didn't die on the cross, then we would have to die on the cross." It takes a bit of explaining to clarify things a bit, but really on some level, he is right: If Jesus didn't die, we would die. Not necessarily on the cross, but death would be the end. We listen to CDs when we drive in the car, and I changed them to Christmas CDs for the month of December. One of them has the Nativity story read from the Bible, and expanded and explained a bit. It goes through Elizabeth and Zacharias, all the way to explaining what happened to John and Jesus after their births. The last part of it says, "What an amazing gift! What an amazing story!" Travis can recite things we listen to in the car with uncanny accuracy. So I love that the person reading this story actually gets excited when he tells what happens later. Why Christmas is so special. Travis gets excited too! I want to have that same uncontrolled enthusiasm when I talk about Jesus. It is the most amazing story!
One of my New Year's resolutions this year has been to practice praise. Praising God in all ways, times, and circumstances. I am starting by learning about praise by reading the very best book of praise, Psalms. Already it has lifted me up and touched me. I am hoping to attain that same unabashed, truthful, and heartfelt hope that David expressed. It's a year that I expect will make me a different person. Another song lyric that comes to mind is "Our God inhabits praise." If that is true, and I believe it to be, then praising him will bring me closer to the one who made me, and open me up to change from the inside out. What an amazing gift!
Sunday, January 3, 2010
Saturday, January 2, 2010
Yeah! We are so excited! It took 16 months, but it is finally nearly finished! (It just needs one more coat of poly.) Travis enjoys telling people about our new french sliding doors. We just like that the color looks so much better than the pink doors we used to have. They definitely did NOT match. Oh, and the plywood didn't work with our decor either. Mireille and Jerry missed seeing them stained by one day, so I promised I would post a picture when they were done. You'll have to excuse the snowflakes and other art work. :)
Friday, January 1, 2010
Travis was in good spirits, but I heard that it wasn't always that way. He was fairly inconsolable, and Justin is quite a sympathy crier, so he launched in to a good harmony with Travis. Somehow he calmed Travis, but only slightly, and put aloe and a few other things on the burns. Travis decided that mac and cheese would not be good thing for him to eat, so Randy made him a sandwich. Randy got Justin to nap and then was still trying to get Travis to eat. That never really happened, so after about an hour of on and off wailing, Randy decided that he needed reinforcements and he called a friend whose daughter had been burned a couple of years ago and she came over with her sack of ointments and lotions. She made some major headway in calming Travis. She was fabulous! And her bandage is what Travis had on his hand when I came home. He was much better by that time, and we discovered an inadvertent bonus: Travis is a thumb-sucker and his thumb of choice is you guessed it, his LEFT thumb! He was watching TV and brought his thumb to his mouth and then realized he couldn't suck and said, "Oh, rats!" I love it!
- Schedule: It has gotten better. Of course the holidays messed things up a bit, but it seems to be working for now. I created a schedule book, so everyone knows when and where all of our therapy sessions are, as well as all of Justin's doctor's appointments, errands, and other responsibilities. One of the things that was impressed on us when were were doing estate planning was to write information sheets about daily life with Justin so that if anything were to happen to us, someone could come in and take over with at least some cursory knowledge of Justin's habits and tastes. It's difficult to make yourself dispensable, but that is essentially my goal.
- Justin's crawling is going fabulously! He is going farther and farther very day. And he is willing to take risks and go over obstacles like pillows and small steps. I can tell his shoulder and arm strength is really improving.
- The Buddy Walk went great! We met our goal of raising $150,00 (and more!) and the day was so much fun!
- The Down Syndrome clinic appointment went well, and we learned that Justin will need to visit an endocrinologist for low thyroid. We have an appointment in early February.
- Justin's separation issues: They seem to be getting worse instead of better. If he sees me in the room, he wants me to hold him. Only me. He does okay if I have to leave him, but he will fuss and whine off and on until he hears noise at the door. Then he lets out a full-fledged wail. I love snuggling and holding him, and he is great hugger, but I need to be able to put him down to get some things done! And now he won't eat in his high chair. He wants me to hold him and then he will eat just fine.
- Travis' sleeping: He had to sleep on his mattress in our room during the holidays with people here. He got sick and ended up in our bed many nights. Now he hurt himself (see previous post) and he thinks someone is coming to get him! And my mother is sick and coughing in the room next to him. Arg! We need health and sleep! All of us!
- Our family's resolutions: We are wanting to spend more time together and in an effort to achieve this we are having one Travis and mommy day per month, one Justin and mommy day per month, 2 mommy and daddy days per month (dates!), and one family outing per month. Nothing big necessarily, but time dedicated to each other with no distractions. I am very bad with this so I am hoping this will help!
We hope you all had a very happy holiday season and we wish you a blessed new year! Thank you for all of your prayers!