Update

It's been an overwhelming couple months.  For some reason, the last post, although written in April, posted today.  Weird blogger. 

Update on my little man: He started early intervention last week.  He tested severe in 4/5 areas and moderate in the 5th.  He is also showing many signs of autism, but we are hoping it's just all the stuff he is dealing with right now.  There was a worry about some deafness, but he passed his hearing test today. Hooray! We'll take the small miracles when we get them.

He was diagnosed with a disorder called FPIES, and has a repeat scope and biopsy next week. 

I can't believe he will be 2 in a couple weeks.  It's been an adventure for sure.  He is such a sweet baby. I love him more than life.  I hope we can get his life to be a little easier, but in the mean time, I'll take the small miracles as they come :)

Hard Day

Hi :) I'm back.

It's been a rough bit, so I had to take a break.

Today was a hard day.

Little Bear had to have a test done today at the hospital, and when all was said and done, a nurse got enema fluid squirted all over her twice, a doctor got kicked, I got puked on, my poor boy screamed in terror for 30 mins, my BFF's floor got pooped on, I was pooped on 3 times, Little Bear had 5 outfit changes, we blew threw a full package of diapers, I changed the sheets in his crib, and had to disinfect his mattress twice, and had to throw away his pillow.  He has a terrible day, much worse than mine.  He starts crying and shaking every time I have put him down, let alone left the room without him.

He has been absolutely miserable.  It breaks my heart.  It's so hard to watch your baby have to go through that, and hold them down while it's done.  I am so done with Drs, tests, and the daily struggle that is his life.

This latest test is for a disease called Hirshprongs. Guess we'll see.

What not to say...

All children struggle at some point in their lives.  Some struggle more than others, and some have very obvious struggles that even the most unobservant person can see.  But, there are those whose struggles are not always obvious, and by looking at them they may “look fine” so those looking in.  Their mothers know those struggles.  They are there to fight every battle with them, and they take much of the weight of that stress on themselves.  They spend sleepless nights worrying, researching, and trying to find help for their child.  At some point in this battle, they reach out for help, for understanding, and for someone to help carry that load, even for a just a minute.  The most disrespectful, uncompassionate, and careless thing you could say to a mother in that moment would be: “He looks fine to me”.  Those five words tell that mother that all of her worry and her fight for her suffering child are worth nothing, that she is over dramatizing a situation, and that she is making herself sick over nothing.  It invalidates her child’s struggle, and the hell that they are going through. 

My son screamed at least eight hours a day for the first 21 months of his life, and still screams for several hours on end each day.  He suffers from a whole host of medical problems that cause him much pain and frustration.  There are very few that truly know all the details of his struggle, the endless doctors, hospital visits, tests, medical bills, extremely expensive diet, sleepless nights, fighting for him, and trying to find a way to help him.  People don’t see the speech and development delays, or the fighting to keep him eating, and trying for two years to get him off of the Failure to Thrive classification.  They don’t see the dates my husband and I don’t get, and the attention my daughter loses.  They don’t see the hours I spend on the phone with doctors, insurance companies, and billing offices.  People don’t see the hours I spend pacing with my son. They don’t see the scratches I get from him in his bouts of extreme pain. I plan every outing around the hours of the day that are the best for him, and how we stay completely isolated for 4 months out of the year to keep him from getting deathly ill. 

It is so hurtful to me, when people ask about him, I give them a little background, and immediately they say “he looks fine to me”.  Nothing brings out the Mama Bear in me more than that sentence.  It makes all of our hard work seem tainted, it makes all of the progress my son has made seem unimportant.  But you know what? It’s so important.  We have worked so hard, and we have so much work ahead.  He is tough, tougher than anyone can see, and I am tough, and I work hard for him.

It’s most painful when those that are close to us say that to me.  They of all people they should be the most understanding.  I try so hard to handle as much of it alone as I can, but in those moments where I am so ready to break, the exhaustion is overwhelming, I don’t know where else to turn, and I just need someone to listen, it is devastating to hear: “He looks fine to me”. 

While a child may “look fine” from the outside, next time a mom is really struggling, and reaches out to you in some way, please choose your words carefully, please think about how you would feel if someone said that to you.  If you were sick, or depressed, and reached out for help, and someone said, “you look fine to me”, imagine how it would break you.  Respond how you would want someone to respond to you.  Think before you speak.  Have a little bit more compassion, and a little bit more empathy.  It will go a long way.