The Upside of Down: Uniquely Unique

We are uniquely unique. Down syndrome. Hirschsprung’s. Supposedly they are more common in one another but we have yet to meet a family with both. At our parent meeting all we heard was how “normal” their kids were besides HD. Not going to lie, that stung a little. Bert was pissed. But I get it. People look at Carson & wouldn’t be shocked he’s still in pull ups at 7, a typical child you would. But the thing is, this is Carson’s struggle too. He is potty trained but dealing with HD makes it much more difficult. I would rather throw away a pull up than throw away a pair of underwear because trust me, some aren’t worth saving. These 2 weeks we’ve been in Cincinnati so far are starting to wear on us all at different times. Carson has been having bouts of crying saying he misses Hunter. I didn’t realize how hard all of this would be on him. Today was my day. I’m overwhelmed & feeling broken down. Why does life have to be so tough all the time. I’m very thankful to be somewhere that understands Hirschsprung’s & our struggle. I hate to post this because we feel so loved & cannot believe the support we’ve received but today was tough. Turning 35 here was tough. Spending this long here has been tough. Most of all having a child battle a sometimes unmanageable disease is tough. Everyone here has been amazing & we are so grateful, just in a rut today & felt the need to share. He already has so many hurdles to go through why does this have to be another. So, here’s to life-changing answers & solutions & here’s to me maybe blogging again. A lot has happened since I stopped & I have a lot to catch up on but I forgot how good it felt to get it all out. I will catch up on the rest of our life & our sweet Hunter Mae but this needed to come out now. Oh, & Happy Valentine’s Day.