Jenny has demonstrated more improvments with producing voluntary sounds. She also is getting better at using a key board. She reads e-mail (if it is in a font large enough to see), but has only writen a couple. She wrote an e-mail to her mom two days ago that took 2 hours. It was less than a typical paragraph, but difficult as could be. She cried and wailed out of frustration but refused to quit until she was done. I have decided that we have not done as much as we use to do, so Jenny is aware that things will be stepping up. She agrees that she has not improved as much since we have been getting out more, and therfore not been home to do vigorous therapy. I am trying to include movement/therapy in all activites of her day.
Right now, Jenny is sitting next to me and working on her augmentative “speaking keyboard”. She did not know what to say, so I told her to write all the things she wanted to tell me, but never was able to. That was a huge mistake on my part. I realized I opened the flood gate of complaints that no man should ever open for his wife. “The tilt table is boring.” “The kids watch too much tv.” “I hate the therapy ball because it makes me drool and the spit gets on my hand.” It goes on from here for quite a while. She gets a kick out of watching me cringe as she hits the “SPEAK” button, and then laughs as I muster the strength to say, “good job Honey, keep typing.”
We did have another tube party to celebrate getting her last tube out. Like the trache party (where everyone had to wear a trache except Jenny) everyone had to wear tubes, except Jenny. It was a huge morale booster. She has been feeling like a burden to the family and a failure as a mom. After the party, she has been more positive about her contributions. She wants to be active in discipline, affection, and day-to-day raising of the kids. Little does she know (or want to realize), but she plays a huge role. The kids fight to see who sits next to her at dinner. We now have a schedule. Anytime she is on the ground doing therapy, she is attacked by a kid with love and hugs. If the kids are misbehaving, one ring of her bell can bring the kids to a stop more than what I do. They start defending or bring there conflcits to her right away, before and/or after she stops them with the magic bell. Even though I am a child therapist- she has taught and reinforced to me that parents over lecture their kids and there is sometimes power in her silence that allows the kids to work out their own problems (with occassional redirects by the bell). If she is not actively participating in the role of a mom, than I don’t know who is. Because of the great mom that she has always been, she does not feel like she does enough- but she never thought she ever did enough.
Dear Jenny and Mark, I really enjoyed reading your post of the 22nd. I think as mothers we tend to believe we are not doing enough… I really sat back and thought of what you wrote Mark – of Jenny never feeling like she did enough… I guess expectations tend to be that way for mothers…. I’ve experienced that many times myself – and I only have one child (a 17 year old) Of course I can get into that with my teaching too (5th graders) where I feel that I should be better at “this” or “that”. I’m come to the conclusion that it’s just maternal guilt…. every woman I know feels it at times.
Jenny- I really enjoyed seeing your recent pictures (even though you may not like them)The pictures showed what you go through…. I’m more a visual person anyway… so I am more able to understand some of what things are like for you.
My students continue to pray for your family each day… is there an address they could write to you? I think they would enjoy that.
I wish God’s greatest blessing for your family over Thanksgiving.
I had to write. As I read about all that is going on and trials that you are going through, I am amazed at how your able to go after things. You do have that drive that will help you succeed. I can only imagine you as a Marathon Runner training for the most important race ever. Your returning health. With a husband to help with that training and your own cheerleaders off to the side or right there….
I hope to see you at the finish line. Enjoy the bountiful love that your family and friends have for you and keep your chin up. We will be cheering for you too!
Dawn Riddle, Omaha NE Old Mill Ward
Jenny…Keep up the good work. I am so excited to hear that you are making voluntary sounds. I think that you are making such wonderful strides. I am so very proud of you….keep it up!
Stay true to the therapy though. It is so important. You will find the time balance to do the things you want to do outside of the house a nd the therapy at home. I think you guys are doing great though.
Take care and kkep up the good work. It sounds liket he chair is a big improvment. I know when my friend got his chair, it helped his esteem go throught teh roof. Keep it up.
In Love and Faith
A very happy Thanksgiving to everyone there at the Lynn home. We think of you always and you are by name specifically always in our daily prayers. We are so thankful that you are doing so well, Jenny, and that your children and family can be there with you. What a wonderful blessing for them! I just read a quote this morning that talked about how important time with children is, rather than things. I think it is wonderful that the children know you are there and that they want to sit by you and lay by you. We hope that your Thanksgiving is a special one this year. Know that we are thinking of you. Love, Uncle Dee and Aunt Lois Ann