Dada and Mimi finally arrived in Denver last week. It was so wonderful to have them both here for a quick visit. Tommy has a very clear grasp on the “visitor” system here in Denver. Visitors = toys and life is good. Tommy leapt into his dada’s arms the moment he saw him and the world was complete again. It always seems like his time here is so quick, but Tommy thrives when he’s here and it’s precious to watch.
Last week something in Tommy clicked. Throughout each of his OT sessions his confidence level was high and his interaction with other children in therapy was beyond my belief. His eyes twinkled, his smile beamed, and he surprised me every single day with his energy and perseverance. I get so emotional just thinking and writing about it. He used every ounce of everything he had in him and leapt and jumped and did amazing things. Something clicked and it was magical.
At the end of the week Rob and I sat down with his OT for our weekly parent education session and she immediately asked how I was doing. As a mother, I spend every waking moment of my life worrying about my babies and my husband and so when she asked me how I was doing I sort of took a step back. I kept telling myself I was fine, but then my eyes filled with tears. Mostly happy tears for all of the incredible work he had accomplished throughout the week; but also tears of fear. I lay awake at night thinking about the “what if’s” ahead of us. I have so many fears about leaving our amazing support system up here; but she consistently reminds me to relish in the amazing achievements, even those ever so small little moments in time.
Over the past six weeks I have developed such a loving friendship and partnership with his therapists. They both wholeheartedly accepted us on the first day we walked through the doors at the STAR Center, and have since walked with us through some grueling days and some amazing days. They have held our hands, listened to hours of questions and seen me through a lot of tears. They are so much more than Tommy’s therapists, they are my friends; and I am forever grateful for this time we’ve shared together.
In addition to some huge achievements during his OT sessions last week, Tommy continued to learn about several new foods and work up a few of the steps to eating with some of them. While he may not actually eat some of the new foods he’s introduced to, he was able to physically and visually tolerate some of them which is more than I could ever ask for. “Food School” as we call it, is tough. It’s exhausting to experience with him, but incredible to witness at the same time. Every day we work through agonizing baby steps with every single new food he’s introduced to, so literally if he’s able to look at it, it a win for the day. Baby steps.
His food intake at home has been steady. He is on a medication that stimulates his hunger so we are grateful for a larger quantity of food in his body. He’s eating the same foods he’s always had, but more of them. I’ll take anything I can get. His sleep, however, has not been so great. He continues to wake up every day around 4:00am and if he does nap its brief. We are desperately trying to work through this with his therapists and have a few options we are experimenting with. He is exhausted beyond belief but manages to power through his long days.
Long days give us more time for memories. Every moment he shares with Claire brings him so much joy and laughter and it’s so beautiful to watch. He talks to her and protects her; but he’s quick to put her in her place when need be. She is everywhere every single second and he is never far behind her. I cannot believe she will be one year old in October. At times I take a deep breath and smell her precious baby skin after her bath. I squeeze her delicious thighs and wrap her little fingers around mine. I try to relish in whatever little moments I can steal with her alone. I take a moment to stare into her eyes and take as many mental pictures of these moments as I possibly can.
I thank God for her go-with-the-flow attitude and typical “second child” demeanor. I like to say God gave us exactly what he knew we could handle during the past year. I’m grateful for these two beyond belief.
There are times when I gaze into Tommy’s tired eyes and imagine the child he would be if he had a full night’s sleep, a full stomach, and muscles with full power to take on each day. His hyper-mobile joints require so much more work from his little body and his lack of sleep and food certainly don’t help. But then in an instant I blink and in front of me stands this amazing little four-year old boy who is blooming right before my eyes.
Incredible things are starting to happen each and every day; but to be honest, I remain cautiously optimistic about every little milestone he achieves. Anyone that knows me, knows I do my best to remain optimistic about everything in life; but when it comes to Tommy, I can’t help but remain realistic. My fears as his mother will never go away, but I have so many hopes for the amazing things I know he will accomplish in his life. I don’t know what tomorrow, or next week, or even next year will bring; but in this very moment, my darling boy is blooming.