"Having a really hard time this week. I think I've cried every night. The reality of this diagnosis is gripping me so tight that I can't breath. I'm so afraid of everything. The present and future. I'm so sad for my baby. I also have another son who is 13 months older then Boone. I was so excited to have two boys so close in age but will they ever have a bond? Am I showing my older son who is still a baby himself that he is loved and cherished as mush as his baby brother. Does this pit in your stomach ever go away? I'm usually not this way but I can't snap out of it.
He was diagnosed in March and is now 13 months old. I have avoided researching as mush as I can because it is scary. I feel that since this has happened my life is consumed with doctors, therapies, stressing because he's refusing to open his mouth for meds, insurance, meetings with case workers and making sure prescriptions are covered and being sent since we don't have speciality pharmacies in my area. On top of all of this I have a full time job that I need. I used my family medical leave up for the year for maternity leave. I'm so afraid of failing. You always fear you will fail your kids in some way but that's not an option in this case. He needs me to give 200 percent at all times and 3 months later I'm already exhausted. I hope this doesn't make me sound like I'm giving up because I'm not. I just need to let some of this out."
This broke my heart! I remember all too well this feeling and this place! I knew I needed to help. I responded,
"I would love to say that the life consumtion does get better, but I'm four years into this diagnosis and I feel like insurance, doctors, therapies, pharmacy and keeping on top of everyone to make sure they are doing their job is eating me alive. I just make sure to take everything a day at a time. My boys are two years apart. I have always had the same fears you have and somewhat still do, but I must share something that happened just yesterday that made me stress a little less. My IS younger son plays on a special needs baseball team. His older brother likes to be his helper but often gets frustrated and it ends in disaster. As we were waiting for the game to start a younger man came up to my oldest and was hugging him and telling him how cute he was. It was very awkward but my son knew that he was special and played along with the situation. The younger man was finally pulled away by his parents and my son looked an me and said that was weird and smiled. My heart melted to the floor. I don't know any 6 year old that would have been that comfortable in that situation. My IS child takes a lot away from my other children ie my time, energy, and attention, but he also gives them something no one else can. They have a relationship that is different than I wanted, but is exactly what they both needed. They are brothers and fight like it, but if anyone messes with his brother he is the first to put them in their place. Hang in there!"
I hope my words bring some strength to her. So many prayers to her and all the families dealing with this diagnosis.
And so proud of Dalan. He was so amazing in that situation! It brings tears to my eyes just thinking about it again. The guy was really in his face and was hugging him and tickling him, but Dalan just stood there, smiled, and let him. His heart has a special place for others with special needs too. Dalan you are one amazing kid!
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