Our days spent in Doctors offices and with therapists are actually the days I feel the most in control. Surprising, I know. I feel I have armed myself with the knowledge to be able to advocate for Dalton and his special needs. Along with my teaching degree I feel I have rightfully gone to medical school as well. I find myself rattling off medical terms like it is nobodies business and people stare at me in disbelief. I promised Dalton that no matter how confused or overwhelmed I got from day one, I would fight for him to get him what he needs. I am proud when a therapist looks at me and says "Wow. You're doing a great job working with him", or "I can't believe you have already applied for that federal funding- I'm impressed." I know that when Dalton can understand it all, he will appreciate all the work we have put in to being proactive rather than reactive (a lesson I learned from my parents).
Right now we are seeing physical and occupational therapists working on several different things. We are working on his neck and leg strength in his physical therapy. Also, we are trying to help his little feet turn out using several different exercises and infant massage to assist us. In occupational therapy we are working on his inconsistent suck. I have started nursing (somewhat) but he is not taking to it as easily as we would like. He is making great progress in his weight but is still behind where he should be, not for long though! The cardiologist thinks that we will be able to hold off on his next surgery for another year or two. The hole in his heart is pretty large and the left side is always going to be smaller than it should be. We are monitoring it closely to make sure he does not get too stressed out or is working too hard while trying to eat. He will see a developmental therapist as soon as he starts to show any sign of delay (prayers this never happens!), but we are 100% prepared for when that time does come.
So, I named this post "A Moment" for a reason. This moment I speak of was something so special to me that I even hesitated to share it with everyone. But I feel that all of you have been such a huge part of the journey and have seen such raw emotion from me already that I figured, why not?
Two days ago it was right after his 5 a.m. feeding and Jonathan had just left for work. I laid down in bed and put him in the bassinet right next to the bed, hoping for a few more minutes of sleep. I reached my hand in and started to stroke his hair to help soothe him back to sleep. The next thing I know he gently took my hand and brought my two fingers to his cheek and just held them there. We "held hands" for the next 15 minutes or so and for some reason I just wept. I cried out of joy for what we have overcome and out of fear for what is to come. I love him more than anything in this world and never thought a love this big could even exist. I know that Dalton is a true miracle and a gift from God, sent here to teach many people so many amazing things. He has already shown me how to be selfless, determined, and grateful for everything we are given. To see what he has done in other peoples lives brings me such pride that he is my son. That was a moment that I will treasure forever in my heart. There was just something so pure and innocent between the two of us in that moment. It is so hard to get caught up with all the appointments and running all over town to get him here and there. I often find myself so stressed out about all of the stuff we have to do that I sometimes forget to enjoy those moments. This is my reminder to myself and all the other parents out there- take those moments and breathe them in, embed them in your hearts, and never let them go.
**This is my special shout out Thank You to my amazing brother, Kyle, and my little sister from my sorority, Alison, for setting up a special non profit fund for Dalton's medical expenses- Click here to find out more!. All of the donations are going to help us provide Dalton with the appropriate medical care he needs. You are all so thoughtful and we are blown away by the generosity of everyone. We love you all!**
Also, check out the amazing photos that Christy Martin took of our little family, here. I'm kind of obsessed!