Tonight's picture was taken around Halloween of 2008. Mattie was home recovering from his first limb salvaging surgery, and he built "Mattie's Haunted Mansion." He used tinker toys, ghost and pumpkin cut outs, spiders, and what you can't see in this picture were the Halloween lights he eventually wrapped around this structure. At night time, this mansion had an amazing glow to it. Notice also that Mattie placed a pumpkin right in the middle of the mansion. In fact, as that week went on, more and more things were added and attached to this structure! By the time he was finished it was definitely a conversation piece.
Quote of the day: The heart hath its own memory, like the mind. And in it are enshrined the precious keepsakes, into which is wrought the giver's loving thought. ~ Henry Wadsworth Longfellow
On the 59th week that Mattie has been gone from our lives, Longfellow's quote seems to capture the sentiments Peter and I feel. The heart may not have a memory, or a memory like we associate with our minds, but the heart can most definitely recall feelings instantly. The heart's recall is so vivid, that in many cases these memories can transported right back in time, to a time where that feeling was first captured. Feelings can be evoked from a sight, a fragrance, or the sound of a musical note. I have found these are all very true for me since Mattie's death.
It is ironic that Mattie began his life with difficulties understanding and processing his sensory environment. Here are some examples, Mattie did not like wearing certain clothes because of the texture, all clothing tags were a major issue, he had a huge physical space issue, so much so that if you came within 5 feet of him, this would make him upset and sometimes provoke aggression and biting attacks, Mattie had issues swallowing certain foods, he did not like the feeling of water against his skin, nor did he like sand or anything with a texture against him. Noises also induced fear. There were other sensory issues as well, but I wanted to give you a few examples so you understood what I was talking about and also understood the amazing work Mattie and I put into his occupational therapy sessions for two and a half years. He worked very hard to overcome these issues. Mattie was a trooper, his occupational therapist was a God sent, and in this learning process Mattie and I became even closer. In many respects, Mattie was like me. We are both overly sensitive to our environment, and therefore, many of the things I see, hear, and smell stimulate my feelings and memories of Mattie.
I went to the mall today with Ann, and one of the kiosks there was selling products that were scented with natural herbs. I quickly deciphered the smells of lavender and chamomile. Two fragrances that bring me back to the days when Mattie was a baby. Mattie had to be taught to go to sleep. Sleep did not come natural to him, and some of you may recall that by 16 months of NO sleep, I finally broke down read Richard Ferber's book, Solve your child's sleep problems, and within two days, Mattie was sleeping like a charm! Ferber became my first hero while raising Mattie! But prior to Ferber, I tried music, special lights, blankets, and of course baths with lavender and chamomile. Forget it! Nothing worked, other than I have associated lavender and chamomile with training Mattie to fall asleep!
I began my trip to the mall however, in a very fragile state. When Ann got to the Mall, I was sitting on a bench crying. Moments can hit me at certain times, and this morning was one of them. Ann and I have different styles. I am typically a very touchy feely person, and Ann may be perceived as the opposite. However, she understood how I was feeling and worked very hard at getting me out of my funk. Needless to say, when in a funk, shopping can be very good medicine. We went into Ann Taylor, and I learned about Miracle Pants today. What a NAME! Any case, they feel and look lovely and before I knew it, funk and all, I bought pants. We bopped around to different stores, and landed up in a tea store. Ann bought me jasmine tea, which is a fragrance that takes me back to the days I lived in California. I remember the first time I tasted jasmine tea with my parents on a vacation. So in essence today was a VERY sensory filled day for me, that reminded me of various points in my life.
When I got home, I decided to go walking on a treadmill. While in our complex's exercise room, I bumped into Maria, a big Mattie supporter, who runs our rental office. Maria follows the blog each day, so while I was walking, I began chatting with her about my visit to see my parents. We exchanged vacation plans and caught up with each other since we last saw each other. I landed up walking 3.78 miles and I find when I am bothered by things, I walk. The longer I walk, the greater the problem. Needless to say, I am all aches and pains tonight.
I would like to end tonight's posting with a message from my friend and colleague, Nancy. Nancy lives in New York and is coming into town on Thursday for a conference. I haven't seen Nancy in over a year, so it will be nice to have this opportunity to reconnect with a friend who has been so supportive through this journey! Nancy wrote, "I was so interested in yesterday's blog as it spoke on a very personal level. Not that others haven't , but, this one seemed more intimate. I am so proud of you for continuing to write and think that this account of your journey provides hope even when hope is dwindling within a family and this diagnosis. I believe children concentrate on what is in the moment, that's what becomes so frustrating for parents. They tend to project and worry about other consequences. Children see what they want and go for it, if allowed. I am so taken by Mattie's desire for creation and inventiveness during his illness. He wanted to experience everything he could. Peter and you gave him the tools by spending time and energy with him, no matter what the circumstances. I remember your feelings of frustration when times were tough and you gave of yourselves anyway. That behavior is what separates wonderful, caring parents from those that see their children as a symbol of their competence. I continue to be in awe of all the pictures you have of Mattie. What a history, although, one that ended too soon."
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