Wednesday, October 21, 2009

Little Miss Mischief Wearing Her Elmo P.J.'s and Elmo Slippers....Sitting In Her Elmo Chair Surrounded By Stuffed Elmos.

"I hear kids with Down Syndrome are the sweetest kids"........
"Bless your heart, you have your hands full, but I hear they're sweet kids"......
"Does your little girl have Down Syndrome? I bet she's real sweet".....
If you are a parent of a child with Down Syndrome, can you even begin to count the number of times you have heard these same things??? Do you laugh about it like I do???
While Hope and Charlie do have an extra Chromosome, they are very "normal". And it will surprise some to know, they are also very, very smart! They do not communicate with words, but they communicate loud and clear.....both their likes and dislikes! I said I had a funny story to tell, and here goes:
Yesterday, Caleb and Lydia were gone to their homeschool tutorial classes, and I was at home with Natalie, Hopey and Charlie. It was a glorious day, so Natalie asked if she could do her school work out on the porch. I opened the windows to let fresh air in the house, and Natalie began her work outside one of the windows. From the time Hope awoke, I noticed she seemed to be acting more like herself....a bit feisty, but thought I could handle she and Charlie by myself without Natalie's extra set of eyes. I was wrong!
Hopey quickly took notice of the situation.....Hopey and Charlie.....and mom. Two against one. She seems to have forgotten she has just had open heart surgery, because she is beginning to feel better, so she will go about her regular business of playing and then move a certain way that "smarts" and brings such pain to her chest that she remembers with a tremendous cry! This has happened a few times, so I am keeping a closer eye on her to try to prevent her from doing something that might end up hurting her and/or causing damage to her chest.
Our morning began with Hope sneaking up the stairs before I could put the gate up to prevent her from climbing them......she isn't supposed to go up and down stairs so soon after surgery and frankly, since her surgery, she hasn't been feeling good enough to show interest in the steps. When I saw her on the stairs, I told myself to not freak out, because I didn't want to freak Hope out and cause her to fall. I began to walk slowly toward her and calmly spoke: "Wait just a minute Hopey until mommy can come help you." She understood every single word I said....... and took up those stairs so fast it was like she was running from a fire. My soft, calm voice turned into a shriek.....and my tiptoe became a full sprint. She laughed and laughed (communicating). I caught the top of the steps.....still laughing!
I carried her back downstairs, fed her breakfast, then took her into her play room while I exchanged the laundry from the washer to the dryer. The laundry room is right next to her play room, so I thought it seemed safe enough.
During the moment I turned my back, somehow she managed to get by me. I found out she had escaped when I heard a loud CRASH!!! I ran into the great room, and Hopey had pushed on the window screen, because she saw Natalie on the porch doing her school work and wanted to go outside too. I want you to know, she fell right through the screen.....onto the deck outside. PANIC!!!
I picked her up and rushed her to the bedroom to check her chest to make sure she hadn't split it open. Thankfully, she was fine. So, I left the laundry undone, sat with her in my lap and watched Barney and Elmo.
Charlie, eventually, became hungry and started whining (communicating). I put Hopey into her little fuzzy Elmo chair and went to fix him some food. As soon as I left Hope to go to the kitchen, only for a few moments, she saw another opportunity to escape and disappeared. When I came to give Charlie his food, she was gone!
By this time, Charlie had gone from a whine to a cry (communicating). I searched for Hope for a good 5 minutes.....I searched the entire downstairs! She isn't able to turn a door knob yet, but I even went outside looking for her just in case she had figured the door knob/lock out. By this time, Charlie was sssccccrreeeaaaammmiinnnggg!!! (communicating). Natalie was walking our dog, Trudy, so she couldn't help.....I was screaming as loud as Charlie.....screaming Hope's name (of course she is non-verbal, so she wasn't answering me, though she was probably using sign language to answer me---not helpful in a time like this).
I finally found her. She had gone into my closet and closed the door.....she can't work a door knob, so she couldn't get back out. When I opened the door, she just fell over giggling! She had heard me calling for her and thought it was the funniest thing!!! She thought she had played a hilarious joke on momma.....nearly gave me a panic attack.
So, for the remainder of the day, I put aside laundry, cooking, and basically everything else (I still fed Charlie, I just waited until Natalie returned to help me keep an eye on Hopey)....and I held the little stinker and watched Barney and Elmo till I thought I'd lose my mind! I could see the glint in Hope's eye......"at some point, mommy is going to have to go do something....then I'll escape again!" She was wrong. I didn't even go to the bathroom! Even though she is quite smart, after three strikes, that little Elmo Pajama Wearing four-year old girly girl in a pigtail was "OUT"!!!
Does this answer the question of how I deal with 5 children.....2 who are special needs children? I just do the best job I can do......housework, obviously is last on my "to-do" list.....I love them every single moment......marvel at their them deal with their disabilities......giggle at the craziness that greets me in a brand new way each day when they decide to step outside of their comfort zone and test new territory a bit......and am reminded each and every time I look into their faces, I AM the luckiest mom in the whole world.....and I wouldn't change a thing! My life is full of the unexpected.....overflowing with laughter......and I get hugs constantly. Perfect? Not even close. Perfect Love? I'd say pretty close!


  1. Too funny. Kiddos love to hide from their parents. I use to hide in the clothes racks from my Mom. I thought it was hilarious myself to hear my Mom frantically calling for me. Now I know it is not funny but scary. Glad she is ok after falling through the window. Funny girl!! Hugs to everyone. Hope today is a better....or shall I say, less crazy day for all of you.

  2. That was quite a day you had! You must be loaded with patience and endurance. What a little mischievous one she is! She and Charlie are such little "love bugs". What a joy in spite of the hard work. So happy to hear she is still doing so well with her recovery.

  3. Hey Melanie & Family-We have been praying without ceasing for Hope's 1st week home, but haven't been on the blog b/c 2 had the flu & then 2 got a stomach bug. It was so fun tonight to catch up & see how God is touching Hope & we loved hearing all about Charlie too. You know every prayer in this household has Hope & Baby Charlie mentioned by name. I just read aloud the crazy day to the boys & I wish you could have heard their laughs. Payton is always hiding from us & he was soooo PROUD of Hope for keeping you on your toes. We all were panicky about falling through the screen though. Thanks Hope for giving us a funny story before we go to bed. We are so glad you are feeling well enough to keep your Mommy running! God Bless you all. Love, Stacey, Neil, Parker & Payton Miller

  4. Sitting In Her Elmo Chair Surrounded By Stuffed Elmos. ...