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.
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
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.
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.
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.
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.