Learning to Play

ballpitToday I’m writing for the Alamo City Mom’s Blog where I share a very brief overview of Tommy’s story, and some of my favorite strategies we took away from our experience at The STAR Center with regard to play. You can read it here.

 

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11 Months

IMG_8152_1 copyWe absolutely can’t believe almost one year has passed since you blessed our beautiful little family. You are simply the most relaxed, happy, giggly, and busy little baby on the block. Your are able to pull up and stand on your own now and any minute we feel like you will be ready to take off. You have only four teeth but your working so hard on the others. I imagine you are around 22 lbs…solid muscle. A tank with a girlish figure is more like it. You have a head full of beautiful blondish reddish hair (if the light hits it just right), and little curls are popping up just around your ears and on the back of your head. You experienced your first bite of dog food this week after I turned my head for a literal second…I’m guessing you enjoyed it because you continue to dash for the dog food the minute it appears in their bowl. You still adore your brother and oh how he makes you laugh. It’s the most precious sound and it melts me. I thank God for you darling girl. We love watching you bloom.

 

Begin

 

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During one of our final days up in Denver I had the pleasure of spending a little more time with Dr. Lucy Jane Miller, the creator of The STAR Center, to tell her, yet again, how grateful Rob and I both were for the incredible therapy and care we had received throughout the summer. We spoke for a while and at the end of our conversation I said to her in a sort of nonchelant way that at least the hard part was over. We had found The STAR Center and had received exceptional care, knowledge, and answers. The hard part was over. As I finished speaking she looked me in the eyes and said softly in her endearing voice, “The hard part is just beginning.”  I heard her and felt every word in my bones. I heard it, but I didn’t want to believe it or think about it; but she was right, the hard part is just beginning.

It was excruciating to leave our world in Denver. For the first time in my life I can honestly say I wasn’t ready to come home. We had lived in our little two-bedroom hotel room for eight weeks; but I had my two babies and my husband and I was just fine. Of course there’s no place like home. I missed my family, my friends, my pups, and my house; but honestly, I simply wasn’t ready. I was afraid.

The day we entered The STAR Center was the day I started to fear our move back home. I had witnessed amazing progress and seen that twinkle back in my son’s eye and I simply couldn’t bear to lose it ever again. I saw a side of Tommy I had literally never seen before. He was engaging, he was confident, and he was even sleeping a extra hour here and there. He was present, and he was the four year-old boy I knew he could be. I wanted to bottle up every moment and I never wanted it to stop. In our last week I had seen Tommy touch, explore, and even taste a few new foods. He had worked so very hard and was so “on” during his last week. We had been exceptionally prepared and educated by our amazing therapists and I knew in my heart we could do it, I just wasn’t ready to say goodbye.

On the eve of our last day at The STAR Center I wrote a little note to Tommy’s incredible feeding therapist, Kelly. It was so hard to write both of his therapist to try to accurately put our gratitude into words. She was amazing and we will miss her dearly.

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Sweet Kelly,

I cannot believe today is the day we finally have to say goodbye to you and our amazing journey that has finally come to an end at The STAR Center. I wanted to send you a quick note to let you know how much we have treasured our time with you. Your guidance, your support, your unending care and dedication to our precious Tommy, and most importantly your friendship mean more to us than you will ever know.

Every single day I watch in awe of you as you work so patiently with Tommy. From the moment he met you, he adored you and every day since he has absolutely loved our time at food school.  Although it is a painstakingly slow process and such hard work for him; you continue to make it so fun and engaging for him every day.

I cannot put into words the feeling Rob and I experienced in the days and weeks leading up to our time at STAR. There is no more horrible feeling as a parent than to watch your child basically starve himself. We knew Tommy was emaciated and exhausted and we were absolutely desperate for help and answers. You took us in and worked tirelessly and fought for him; and within the first week we had more answers than we could have ever received in years of traveling to countless doctors and specialists.

Your focus amazes me Kelly. We now know that the signs of his sensory and motor issues with regard to food have always been there we just didn’t know what to look for. You were always in tune to even the slightest change in his skin tone or the slightest change in his body movements during our sessions. You taught us to study and stay connected to our son in a different way when it comes to eating. You’ve opened our eyes as parents to so much and we are beyond grateful.

Thank you for loving and believing in Tommy, and thank you for believing in Rob and me. You have given us a gift beyond measure Kelly and I just can’t put into words how much we are going to miss you. You have such a tough task ahead of you everyday when you walk into work and you do it so gracefully. You are an amazing teacher and guide to so many families and your hard work truly does pay off.

With tear filled eyes I thank you from the bottom of my heart. Thank you for giving us our son back. You are incredible Kelly and we so appreciate every moment you have given to our family.

All our love and gratitude,

The Gish Family

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When we got in the car at the end of our day I couldn’t help but cry. I cried quietly as to not disturb Tommy, but I’m certain he could feel my pain. It was such a tough moment for me. I knew in my heart we could take on this new normal but I don’t think I fully trusted myself. I was leaving behind an army of support and I felt as though I was being thrust out to battle for my son. I have an amazing partner and more tools than anyone could ever ask for, but at the end of the day I still felt terribly afraid.

The next day I took one last deep breath of the cool mountain air and stepped on the plane.  The wheels left the runway and just like that, eight weeks had flown by and we were one our way home.

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We arrived home on Saturday, and after two exhausting days of driving, Rob arrived home on Sunday with our car. We were all so very tired and Sunday was an especially horrible day for Tommy. He cried at the drop of a hat, he was frustrated easily, he ate very little, he had been up since 4:00 am, and the list goes on and on. I did everything in my power to just be still the entire day. I tried to have as few transitions as possible in an effort to keep him calm and comfortable throughout the day. Our big outing was a trip to get Tommy a pet fish, Lucy, which he had been asking for throughout the summer. As our luck would have it, Lucy the fish died a mere four days after we welcomed her into our family…total fail…but Tommy surprisingly did just fine. Lucy II is now resting comfortably in her new home in his room. Fingers crossed that this fish will last through the weekend.

This past Monday, Tommy started his first day of school. Rob and I had tremendous anxiety about him returning to school. How will he handle the transition? How will he make it after being up since 4:00 am? What if he won’t eat his snack and didn’t have breakfast? Honestly, I was a wreck. I spoke with his darling teacher on Sunday night to give her an update on our last four weeks of therapy and after I hung up the phone I thought to myself…please God just let this week go smoothly.

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Overall, his time at school this week was good. His sleep has been horrible and food has been minimal; but he had a good week. Each day this week I arrived several minutes early for pickup and I watched him as he played on the playground. He has clung so tightly to his cousin this week and she is kind and gentle with Tommy. Her familiarity and predictability brings so much comfort to him. I love the way they love each other beyond words, and I thank God he has her for support. He is absolutely exhausted at the end of his school day and the afternoons are brutal, but I’m hopeful as time goes on the consistency of each school day will be great for him.

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This past Wednesday I called Tommy’s OT from The STAR Center, and was planning to just leave her a message to let her know how his week was going. To my surprise, she picked up and it was wonderful to hear her voice. She was the one person I needed most this week to tell me that everything was going to be ok. We knew he might have trouble this week, we knew he might not sleep well; but I guess I wanted to believe something different. She continually reminds me that even the smallest mountains are huge achievements for him and he is doing amazing things.

Although its scary to even imagine, we are going to take a break from OT and feeding therapy for the next three months. We are putting our faith in God and the amazing teams at The STAR Center and taking their recommendations to give Tommy a break. They say that most families start to see the biggest changes around three months after their treatment ends so we are hoping and praying for amazing things to come. In the mean time, my precious baby boy is taking it one day at a time. I imagine things may get a little worse before they get better; but we now have the tools to keep him regulated and strong throughout each day.

So tonight we check off week one. We did it. It was messy and hard and there were lots of tears…but we did it. Tommy did it.

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Until We Meet Again

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When you first walk down the halls of The STAR Center your eyes are immediately drawn to the beautiful tiles that adorn the walls as far as your eyes can see. The colors light up the path and each unique tile is placed together beautifully with the other.  At first glance you see beautiful art from hundreds of children who have walked the halls before you; but what you don’t see are the powerful stories behind every individual tile and the child that each one of them represents. Behind each tile is a child struggling with SPD. Behind each tile is a family whose world was once so chaotic and so broken until they finally found the answers they had been searching for.

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This past Friday, it was our turn. We sat down and Tommy was given a tile to paint and leave at The STAR Center and his OT, Vin, painted one for us to take home as a reminder of our time here. Tommy’s favorite color is yellow so he adorned his tile with as much yellow paint as you could possible place on a brush. He painted his name and his age and we all agreed it looked perfect. Vin painted a collage of all of Tommy’s favorite activities. The ball pit, the Rainbow Room, some clouds to remind him of the clouds above the zip line, and his favorite lizard, Frank.

I feel so blessed to place our son’s mark on the walls that will live on in perpetuity at The STAR Center. The paintings on every tile represent so much more than what initially meets the eye. The paintings, and the walls on which they hang, represent hope.

IMG_7860 copyWe left the tiles to dry and headed to the gym for some final moments of therapy and play with his precious therapist. Friday was Vin’s final day with Tommy before she headed out of town a week ahead of our departure. We will continue with another OT for our few final days in Denver, but while we still had her, we soaked up every last moment.

I did everything I could to hold it together as long as possible so as not to disturb Tommy with my own selfish tears during his therapy.  He continued to play as he did each day, diving into the ball pit, digging for animals for his “pet store” and riding the zip line having the time of his life. As he crashed into the ball pit after a fast ride, I was reminded of the first day we sat in that very same ball pit with a very different little boy. I remember looking at the zip line up above and thinking there is no way my child will ever know how fun that is. There is no way my child will ever experience the rush of zooming across the air and crashing into the ball pit over and over and over again…no way. These pictures and the smiles on their faces are more magical in my eyes than you will ever know.

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Our time soon came to an end and as we were leaving the gym I felt that infamous lump in my throat starting to appear. We had spent the entire summer together every single day and she had given so much to our family and I just couldn’t imagine not waking up the next day ready to play with Vin. As we arrived back at the front desk I knew it was time to say goodbye.  She presented Tommy with a precious Super Star award for his hard work and gave him one last big hug. My eyes filled with tears. I gave her a hug and tried, once again, to hold it together for Tommy. I reminded him that these were happy tears. Mama’s not sad, just so happy and grateful for the amazing blessings we’ve been given over the past eight weeks.

This goodbye was especially hard for so many reasons. I knew I would see Vin again for our parent wrap-up meeting later that day; but it’s always hard watching your child say goodbye to someone when they have no true concept of what’s going on. He adores her and I know he will miss Vin terribly.

IMG_7892 copyLater that day as our parent meeting was ending I thanked her, once again with tear-filled eyes, for everything she had given to Tommy and to our family. She continued to remind me and Rob that we CAN do this. There will be many challenges ahead, but we can do it. I have so many hopes and fears about the next few weeks and months ahead as we transition back home and into school once again. There will be good days and bad days; but I always have to remind myself, that’s life. He is growing and changing and learning every minute of every day and all we can do as parents is be present for him and support him in whatever way possible.

The night before our last day I composed an email to Vin to let her know how grateful we were for our time together. Words are not enough to properly express our eternal thanks.

IMG_7962Vin,

I have so many emotions running through my head tonight in anticipation for our last day tomorrow. I know I will be an absolute wreck inside but I will use every ounce of everything I have in me to keep myself together for Tommy. I knew I wouldn’t have the time or the words to express my thanks to you in the midst of all my tears tomorrow so I wanted to send you a note tonight to thank you while I still had some composure.

I will never ever forget the first moment we walked in the doors at the STAR Center. We were two parents absolutely broken, exhausted, and desperate and we had battled through so much together to get us to that moment. We were walking in with our darling Tommy who had no idea the mountain we had climbed to get there. You welcomed us with loving, open arms. You knew exactly where we were in that moment and you reached out your hand to Tommy and our journey began. Here you were, this woman we had never met and we were standing before you entrusting our son to you. It was a huge leap of faith. Although you are not a mother yet, you will one day know the courage it takes to trust someone with your child. You calmed our fears and let us know immediately that although it wouldn’t be easy, you would be there to support us and that’s exactly what you did.

I want you to know you have given us our son back. You believed in him and you knew the little boy he had every ability to become. You have given us our life back. You have supported him every waking minute you are with him and guided him to where he is today. 

Thank you for supporting me and Rob and guiding us through such a life changing process. It has been so so emotional for me to even imagine the day our eight-week journey would end and now the day has come. Next week and the weeks and months ahead will just not be the same without our amazing time at STAR with you each day.

At the end of the day I hope you realize what an amazing job you are doing, and I hope you realize just how great your impact is on each and every family you touch. We have just competed one of the most amazing experiences in our lives and there is no one else I would have rather entrusted my son’s success with than you. Thank you is simply not enough.

All our love and gratitude,

The Gish Family

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