The best cure for insomnia is to get a lot of sleep

W.C. Fields

This week has been rough. The little one is in what is referred to as a “sleep regression,” and has been keeping Jesse and I up ALL night. We were blessed with one of those babies who slept through the night almost immediately, so this felt like a deep betrayal on his part. I have been the sickest I have been in YEARS, with lots of coughing, sore throat, fatigue, and insomnia due to lack of ability to breathe. For the past five to six days my husband has been exclusively waking up with Corbin in order to try and let me sleep, we are both still working forty hours a week, and trying to have some semblance of a life. It has been a rough time in our house, and it will come to a head tomorrow when we head to our FIRST Spina Bifida clinic Day. We will be travelling to Orlando, and spending the next two days doing imaging/testing and then a clinic day on Friday morning.

For SB kids, Spina Bifida clinic is a day where you go to your clinic and see many many doctors and care givers all at once, and then meet and speak about your childs ongoing care plan, their progress and general wellness and progression. To say I am nervous is an understatement. I am sure my general anxiety has been part of my insomnia, I am so apprehensive about this set of appointments. I am so grateful that the baby has been doing so well. His local doctors have been so impressed with him, but after such a complicated 2019, I am so scared to get bad news. I know I have to be optimistic and just hope for the best, but we have had such a hard year, and I know my heart cant take any more bad or complicated news.

I am so proud of this baby. He is the light of my life. I am so happy he is in our life, and he has truly completely our family. I have no words to express my love for him and his tiny heart and soul. His big blue eyes, and his smile, and his spiky hair, and his cute little belly laugh. Sometimes when you go to so many appointments, and see so many doctors, and are constantly in clinical environment you get frustrated because you want everyone to see your baby as a baby, and as a person, and not a statistic or a patient. I just want to enjoy him and cherish our time together as we approach his seventh month of life. I want people to see his fun personality and his heart, his cuddles and smiles, and not his complications or medical conditions

I am dedicated to getting my baby the best health care possible. I am dedicated to giving him his best shots, and the most opportunities he can. We are a fiercely supportive family. I will not be overcome by my fears and anxiety

He is strong. He is loved. He is capable of anything.

Wish us luck this week!