Caught Between Two Worlds

My husband I and I were talking over dinner how we feel caught between the two worlds of parenting. We have come to the realization that we will never leave the diaper bag phase of our lives and yet we can not imagine what life would be like with out Eric. Yet at the same time we are going through the empty nest phase with our oldest Teri leaving for law school.

Each child has brought extreme joys and challenges to our marriage. Both of our children are so different they only way to know that they are siblings is by those gorgeous hazel eyes. We have managed to raise to the challenge of both children, lets just say that they both dropped off the pediatric developmental chart at 18 months of age but in opposite directions.

It is physically challenging to raise a disable child and the hours are long. The toll on the body is great. I love Eric's smile and gleeful chortle that seems to make it all worth while. Eric has taken us to places that we never would have imagined going to. He has gotten us special tours of places when we did not know that we needed to make reservations for a tour a year in advance in the first place. He has opened out lives to some of the best people on the planet. He has the knack of bring out the extremes in people either the best or worst, but mainly the best.

Teri on the other hand is the precocious child always asking, why, how, what. This can be harder then the challenge of the disabled child. While most of my friends were trying to keep their children from stuffing food into the VCR, Teri just had to know why when she put in tapes that looked the same on the outside gave her different stories, at 3 she just had to know how magnetic coding worked and how it was applied. We went through the same questioning with the solar system and volcanoes and just about any other subject. Her melt downs were usually because I could not explain how something like a laser worked. She did not like me to put her in time outs or to get in trouble so by the time she was in 1st grade she usually figured out on her own what she did wrong and anticipated what her punishment would be. She must have been one of the few children on the planet to utter the following phrase " leave me alone I in time out because I did____" with out being put in time out by an adult. So we taught Teri that you must look at a problem from all sides, that if you had 2 people in a room and could not come up with a least 3 view points that someone was asleep. This trend continued through out her life. I was at a speaking engagement once and had to excuse myself to take a call from Teri. Teri knew that I could not drive her home that day but called to see if she could go to a lecture on black holes with her friend and that her friend's mom would drive them home. It was the same day a highly anticipate CD was to be release and the malls were going to be packed. Some one had ask if she was asking to go get the CD, and I had to say no she wanted to go to a lecture on black holes. By the look on the persons face I could tell this was not a usual high school students reply, but it was typical Teri.

One would believe that with 22 years of experience with these two children that we would be prepared for this stage of life. We feel like empty nester's yet we have one child that will need care for the rest of his life. We would love to travel but you should see the amount of gear that Eric travels with, let put it this way, we fill the van to overflowing and yet everyone but Eric, only has an overnight bag for the week.

If you are ahead of us on this curve of life please let me know how you manage to handle things, otherwise we will just muddle through like we have for the last 22 years.

Have a good day and enjoy your families.

Eric

Eric's room is closer to looking more like a hospital room than ever. Yesterday we got the new suction machine. It is not that I wanted a suction machine but in order to get nursing respite when Eric is really sick, I needed to have a suction machine in the house. I hope that Eric does not get sick any time soon, in his healthy state his needs are high enough. One a healthy day his care needs take 6 to 8 hours per day.

I know that I have a creative bent but I can not figure out how to decorate the suction machine with out destroying it or impeding its functionality. It is a rental so it has to go back when we are done with it. The same goes with the IV pole. I wish that manufactures would realize that these things go into homes to and we do not like institutional gray. Can't they come up with one covered in say Sesame Street friends? If you my dear readers have any ideas please let me know.

Today Eric is having a good day, so he is off to camp and I get to go to do errands and a Tucson Police Department training. This means that I talk about what it is like to be Eric's mom and what I would like the police to be aware of when they come into contact with Eric. I will also include my usual plea to ticket people who park in handicapped parking places without a permit. After all there are not many places I can deploy the ramp on my car.

I wish you a fantastic day and a short to-do list.

Friends

Everyone should have a friend like Justin. Justin is Eric's friend at camp. Justin has gone from a shy boy to a great advocate. Take today for instance, I made a big time mommy boo boo. When I packed Eric's lunch for today I forgot to check to see if there were any extensions and syringes in Eric's lunch pail. Just to clarify Eric has a mickey button( better know as a g-tube) which goes right to the tummy, we don't fool around with food, we send it straight to where it is suppose to go.

I got the panic call that there was no tube or syringes, so Teri gathered the supplies and I my purse,pod, knitting and headed off to camp with the supplies. Eric's camp councilor was happy for the supplies, Justin on the other hand told me to "be more careful next time and don't ever forget it again" He said I was not doing my job right. I needed to take better care of his friend.

There are other times that Justin will tell me about Eric's day or what supplies I need to bring to camp for the current fundraising effort. I am so glad that Justin is in Eric's life. Justin will go far. Some day I hope to see him on the Governor's Council for Developmental Disabilities as a Self Advocate. I can also see him answering questions and providing training to public servants on how to handle the disabled.

Thank You Justin for being a wonderful part of Eric's life. And for the rest of the world please look beyond the physical and learn to look at the person. I know that if you meet Justin you will know just what I mean.