This morning, I finished another book about a child with Down syndrome entitled Matthew. Obviously, the main character is a boy named Matthew. His mother is the author. This book was almost devastating to me for several reasons.
When the parents found out that their second child had Down syndrome, the father really didn't want to have anything to with him and the mother hoped that he would die (not because she didn't love him, but because she knew how difficult his life would probably be). So that made me think about Seth -- would it have been better for him to go right to Heaven instead of deal with this life? Since Seth is pretty much healthy and times have REALLY changed since Matthew's birth in the 1960's, I think my answer is "no" -- God sent him to me because He knew how much good Seth's life would produce.
Matthew's parents put him in three different institutions and one private home (not their own) throughout his life. Some of the things that Matthew endured in the institutions are just too horrible for me to think about long enough to type them out. Neglect was one of the least awful. He was well taken care of in the private home, but my negative reaction to that one is that he wasn't with his own family. I really don't know why the mother didn't want him to live with her. She really did love him and want the best for him. Why didn't she KNOW as a mother that what he really needed and wanted was HER?! Again, I thought of Seth in this respect. I learned a valuable lesson from this book: NEVER, NEVER, NEVER put Seth anywhere that I can't be with him or at least know every detail of what will and won't be going on. My brother-in-law is involved with a special needs camp in Ohio, and I'm hoping that someday Seth will be able to enjoy going to this camp. BUT after reading this book, I will probably either go with him or at least take him there myself and "inspect" everything and everyone that he'll be around and check in on him often (yep, I'm going to be one of THOSE mothers!).
The most heartbreaking part of the book, of course, was Matthew's death. I cried so hard this morning, I was almost embarrassed to leave the house to go to the school for Luke's lunch because my eyes were still red and puffy. Matthew was born with something wrong with his heart. Apparently, back in the 1960's, doctors didn't have the knowledge or experience that they have now because there was nothing they could do for Matthew. He struggled with many different health issues throughout his life, but then died of heart failure (rather slowly and painfully) at the age of 25. Part of me realizes that 25 years with an angel really is a blessing, but part of me can NOT handle the idea of my own baby's mortality. Seth was also born with heart problems -- a pretty large hole that was repaired when he was about nine months old. The general consensus is still (as far as I know) that people with Down syndrome have shorter life spans than other people. In a way, I'm glad of that because I do NOT want him to have to worry about my not being around to take care of him. But I also don't want to have to live without him or have him suffer in any way. As a Christian, I know that his life (all life actually) is in God's hands, so there's no need to worry about it. As a sinful, selfish human being, I still worry.
Just think about the title of this post. Are you chuckling already? If you know Luke at all, you probably are! Tonight, he decided that he wanted to hear my heartbeat. Then he wanted to feel my heartbeat, but said, "Mom, I don't feel your heart beeping!" That's not a typo, either. He often gets words close, but incorrect :-) It makes conversations with him VERY entertaining!
Then when it was time for people to be baptized, he remembered that he wanted to be baptized. I had forgotten to really talk to him about why we get baptized, so I said that he'd have to wait until next week. The service ended, and we all got up to leave -- except Luke. He considerately put his feet up on the pew to let everyone else get past him. He had decided to sit right there until the next opportunity to be baptized! Thankfully, I had a mission to give him: we have to find his Bible in which I had written the date that he asked Jesus to be his Saviour because Pastor Tony would probably ask for that date before baptizing him. Whew -- Luke came home with me :-)
On a little side note -- I did something that I've never really done before: refuse to make allowances for a headache. I've had a migraine all day, been close to passing out a couple times, very close to upchucking several times. I decided, though, that I was going to ignore it and go to church anyway and not allow physical pain to change how I treat the kids (i.e. no yelling or be snippy with them at all, but trying instead to be more patient and kind than ever). I still have the headache, I couldn't stand up during any of the standing portions of the church service (which I HATE because that made me conspicuous which I always try very hard NOT to be!), but I didn't pass out or puke or really yell at the kids (only once and it wasn't really yelling). I am glad that the day is finally over :-)
I don't feel like looking back through old posts, so just in case I didn't mention it before I'm on twitter. (click on that word twitter to see my page) Twitter's kinda fun -- squeezing an often-times long thought into only a sentence. I joined it to be able to get Third Day's updates, but have found several other people on there, too, that I like to follow :-)
Luke is all wrapped up so that he doesn't "freeze" on the way downstairs to get dressed for church :-) We're going to be late if I don't hurry up and get Seth bathed, dressed, and fed! Seth is going to a new nursery today -- I hope it goes well. I'm sure it will -- he's such a sweet little guy, everyone will just fall in love with him :-)
Last night, Luke was playing around when I was trying to get him to lie down and get his braces on. I firmly told him, "You WILL lie down!" He smiled his ornery little grin and said, "in green pastures." :-)
Seth's face here cracks me up! I think he looks like a "typical" person with Down syndrome in this picture, but he's having so much fun in that water :-)
Joel needed a haircut badly, so I decided to take both boys in. They both begged me that if Fran was busy, I wouldn't cut it myself (not good for Mom's self-esteem, but I gladly agreed). I took them to a hair school (I think it was anyway). Most of the "ladies" in there looked like they'd come to work/school/whatever right from their night jobs on downtown corners! Some of the clothes were downright embarrassing! Anyway, the boys' hair is "A.C.S. acceptable" now and I guess that's what really matters.
Got a picture of Seth sleeping :-) He woke up at 6 a.m. today, so he took a GOOD nap! Since he woke up so early, though, we got to do a real Walmart run -- return stuff and everything. And I didn't have to race through the store like I normally do. Seth has been doing some really good work at his therapy appointments lately -- talking more, doing more difficult things with his hands such as using a spoon and putting wooden puzzle pieces in place. Very impressive :-)
I made pizza tonight for dinner -- YUM!!! A couple days ago when Makenzie and I were cleaning her room, I found a pencil that matches my calorie-counting notebook. I begged her to let me have it and took it as a sign that I needed to start counting my calorie intake again. I also took the eight-pound weight gain as a sign :-( I am REALLY looking forward to summer when I can walk every night again! I have a treadmill, but I can't find a good place to keep it (it's in the cold, dark garage right now -- a little spooky and COLD) or a good time to use it. As soon as it's still light until 9 p.m., I'll probably bundle up and start walking outside again. I don't think I can wait until summer.
If you turn on your speakers and wait a little bit, some music will start playing. If it's working correctly, you'll hear the long "Saved" by Third Day. Here are the lyrics:I was blinded by the devil, born already ruined Stone-cold dead as I stepped out of the womb By His grace I have been touched By His word I have been healed By His hand I've been delivered By His spirit I've been sealed Now I'm saved by the blood of the LambYes, I'm saved by the blood of the Lamb And I'm so glad Yes, I'm so gladI am so glad I want to thank you, Lord I just want to thank you, Lord Thank You, Lord! By His truth I can be upright By His strength I do endure By His power I've been lifted In His love I am secure He bought me with a price Freed me from the pit Full of emptiness and wrath And the fire that burns in it. Now I'm saved by the blood of the Lamb Yes, I'm saved by the blood of the Lamb And I'm so glad Yes, I'm so glad I am so glad I want to thank you, Lord I just want to thank you, Lord Thank You, Lord! Nobody to rescue me Nobody was there. I was going down for the last time By His mercy I've been spared Not by works By faith in Him is all For so long I've been hindered For so long I've been stalled. Now I'm saved by the blood of the Lamb Yes, I'm saved by the blood of the Lamb(Lots of "I'm saved" and "I'm so glad") Thank You, Lord!This song can take a truly rotten day and make it great, just to KNOW that I'm SAVED, God loves me enough to SAVE me and to love me NOW!This song can also take a pretty ok day and make it even better :-)
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