A Knot In Our Rope

IMG_7534I blinked and our four week break at home had flown by; and while I enjoyed so many things about being back at home, all I could think about was getting right back to Denver. Tommy was so happy to be home, and mentally and physically he needed the break desperately. We spent a lot of time relaxing and playing with those Tommy knows best. He missed cousin J more than anything and when they finally reunited, their laughter was infectious.

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Around the third week of our break at home, Tommy started regressing. His food intake fluctuated more and more each day, he was waking up at 4:00 am every morning with a few appearances as early as 2:15 am, and he wouldn’t go back to sleep. He was exhausted, we were all exhausted and the cycle continued. The only thing that got me through those last few weeks was the comfort in knowing we would be back with his therapy teams very soon and they could hopefully help us through it.

I am beyond amazed and proud of my darling husband who, despite our excruciatingly early wake up calls, managed to work all day and head off to graduate school twice each week. He left early Friday morning ahead of us to drive all of our gear and the car up to Denver. He dropped off the car at the airport on Sunday morning and got on a flight back to San Antonio. An hour later the kids and I landed in Denver. This past week he finished his final project and presentation of graduate school and I couldn’t be more proud of him. He has worked so hard and sacrificed so much for all of us during one of the hardest seasons of our life. I honestly don’t know how he did it, but I cannot put into words how proud of his incredible accomplishment I truly am. We miss him terribly.

IMG_7585We arrived at the STAR Center and it was as if we were coming home to family. Tommy and I had missed everyone so much. I was finally able to take off a subconscious shield of armor I had placed upon my heart when we left. I found it surprisingly hard to transition from a space where I didn’t ever have to explain myself or try to justify his situation to anyone, to being home and having several varying opinions on his progress.

I heard countless people say to me, “He looks fine…He’ll be fine…He’ll be eating new foods in no time at all…etc.” And while I so appreciated their concern and opinion, it’s always hard to hear someone tell you something about your child that they know nothing about. In fact, I had heard these words for four years and the bottom line is, we have life-long challenges ahead of us, and frankly those words just sting too much. I simply lead them to my blog to read and educate themselves and those that had further questions I was glad to answer.

As a mother with a child struggling with something so dynamic and unseen to the naked eye, it’s brutal to listen to others tell you about your child when the one thing I found myself needing most during our break was listening ears. I needed a minute to break down, to grieve, to breathe, and just be. I am so blessed with some of the most amazing friends who pulled me out of the house and sat with me. They just listened and supported me through lots and lots of tears that I had held back for four weeks while we were away.  In my opinion, the single most important thing anyone can do for a mother during a difficult time is simply be there for them…listen to them…and ask questions so that, in turn, you can better educate yourself on a little glimpse into their world.

IMG_7741_2Our first week was hard. His little body has worked tirelessly these past few days and he’s exhausted but happy. Right off the bat, the therapy teams were most concerned with his lack of sleep so we are testing a few options to see if hopefully we can come up with a solution. The problem is, oddly enough, he sleeps better here than he ever has in his entire life. We are trying to nail down the amount of mental and physical work his body needs to promote good sleep. The goal is to eliminate any regression when we get back home, so in the mean time I continue to enjoy my 5:30 and 6:00 am wake up calls…and I’m not complaining one bit.

One of Tommy’s many struggles with SPD and dispraxia includes transitions. We have grown increasingly anxious about his transition into the new school year, and in an effort to help him we introduced Tommy to a new group model of occupational therapy that will continue for the next three weeks. Once a week, he and two other boys his age, all with similar SPD struggles, spend one hour together to work on social integration. It is our hope that this will start to help him develop tools to prepare his body for the transitions ahead of him when we get home. This will be one of our biggest battles when we get back so we are focusing on lots of tools to support him in every way possible. The smallest transitions for a normal child can take months and months of work for Tommy, but our hope is that this upcoming school year will be as smooth as possible.

IMG_7650_2In addition to his occupational therapy, his feeding therapy has kicked into high gear this week as well; and it’s been increasingly hard to experience with him.  This week the team discovered another road block that may explain why he’s been struggling with various multi-sesory exercises we’ve been working on during his feeding therapy. They have identified that Tommy has an extremely over responsive tactile system which can send his body into a “fight or flight” mode when a new texture is introduced that is overly stimulating to him. This is a critical component when it comes to his eating because if a texture is the slightest bit over stimulating visually, has a strong smell, or intense texture it will take massive amounts of work to get past the textural component before he will even begin to work with it. Only after he has developed a motor plan for the food and knows its safe to look at, smell, or touch; then he can begin to work up the steps of eating to eventually become comfortable with it. Eating is more work for us than you can even begin to imagine; but he amazes me with his perseverance and patience and I am grateful to walk with with him through this each and every day.

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IMG_7605While the week was filled with some really tough moments, we had an amazing visitor to help brighten our week.  You may remember from my first post about SPD when I spoke about the moment when I called the first occupational therapist that was highly recommended to me by my dear friend. I called this woman whom I had never met and broke down in tears begging her to help me with my child. She came to evaluate Tommy the next day and the rest, as they say, is history. Mandy came this past week to visit us and the STAR Center for two days and it was so wonderful to have her. She was able to observe Tommy in OT and feeding therapy and speak with his therapists face-to-face. Her passion and love for my son is indescribable and I cannot even begin to express how much her visit meant to me.

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IMG_7661On Saturday we attended a fundraising event at the STAR Center for the clients and their families. The weather was beautiful and the activities were perfect for kids just like Tommy. When we arrived we saw a huge bouncy house and walked right past it as we usually do. Tommy has never jumped in a bouncy house because he is usually too uncomfortable with other children and there is never an opportunity to clear it out to give him a moment to jump freely. Until now…

IMG_7696The moment we noticed there were no other kids around we jumped in together and I prayed that he could experience this joy if even for a brief moment. He had the time of his life and I haven’t seen a smile so big or heard a laugh so hard in a very, very long time. My heart burst with joy for my precious boy and it was perfect. The smallest moments of joy mean more to me than anything and that twinkle in his eye during that moment was priceless.

IMG_7705Sister got in on the fun too. She, thank God, continues to be so easy going. I find myself holding her a little longer just before bed and when she wakes in the middle of the night in an effort to steal a few little moments with her when I can. While I’m constantly trying to support Tommy I often times run out of every ounce of energy I have when I can finally focus on my precious Claire. I know these darling baby moments won’t last forever so I’m trying to appreciate any time I can get. I am madly in love with her.

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At the end of the event we had some time to speak with the amazing Dr. Lucy Jane Miller who founded the STAR Center and has written and published two books and countless other articles on SPD. She is a pioneer in the field and is known world wide for her tireless efforts in research. The moment I met her I felt a lump in my throat forming and couldn’t help but tear up. I was at a loss for words and simply said, “Thank you. This place and the work of his amazing therapists has given us our son back.” Tears filled my eyes, but I knew I didn’t have to say another word. I know she felt the depth of my gratitude. She is a wonderful woman and I am honored to know her.

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During our time at home I had lunch with a wonderful woman who explained life’s struggles in a beautiful way. She reminded me that this moment in our life is simply a knot in our rope. A moment in time that has rocked our world and changed us; but is making us stronger in return. We’ve climbed this far in our journey and I have to allow this knot to help support my feet as I climb on toward the next knot that will come our way in life. This climb is tough, but I wouldn’t have it any other way.

2 thoughts on “A Knot In Our Rope

  1. Love this update and prayers for you, sweet friend! Could Tommy’s smile be more infectious and amazing? I think not 🙂

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