Monday, September 1, 2014

The Special Needs Journey...

I love to update and share with everyone how our Mr. Max is doing. He is an incredible warrior and we are so proud of all he has accomplished. Of course when Daniel and I found out we were expecting, we never could have imagined we would be taking the road less traveled of living a life with a special needs kid. I was a teacher and had worked with special needs kids before him, but I had absolutely no clue the real life...the day in/day out behind the scenes of raising a child with special needs. That's why I like to occasional blog about the struggles we face along with the joys to raise awareness in case you have other friends strolling down the same path we are. Our sweet Max has an extensive medical history and just had his 8th surgery. He needed two separate surgeries and I requested they combine them with the surgeons operating back to back so that we would only have to put him under once...and Texas Children's said yes because they are awesome like that :).
 So a few weeks ago this cutie had his tonsils and adenoids removed, ears cleaned with a third set of tubes placed, and had eye surgery to correct his misaligned eyes. Daniel and I were nervous to put him under because of his bad lungs and how much he has struggled in the past from surgeries, but he totally rocked it!
 Although, his throat hurt him extremely bad and we had a rough couple of weeks recovering. He required a lot of extra snuggles to help keep the drainage running down his throat. Max had a surgery where he can't ever throw up when he was 11 months, so in return he gags and chokes quite often through the day. Therefore, this caused lots of pain after having his tonsils removed.
 About a week before the surgery Max started becoming aggressive, hitting himself by slapping and then progressing to punching. (Which this isn't completely new behavior since we have been working with him for a couple of years now not to ram the wall with his head). The two weeks after the surgery his aggression became stronger and he would scream and beat himself up all night long. He wouldn't allow Daniel or I to console him at all, so I would just lay in bed crying listening to him at night. We ended up taking him off his seizure meds which helped reduce his aggression some and then it has also calmed down some once he started feeling better and slept through the night again. I share this with you again to raise awareness of life behind the scenes of a special needs kid. As parents we tend to only share the joys and inchstones that our Mr. Max has accomplished, but not always the serious rough patches we work through with him.
 Another obstacle we face with our sweet little guy is his constant medical visits and therapies. His medical team has continued to grow the older he has gotten. We are now up to a medical team of 19 (10 doctors and 9 therapists)...we split our doctors between Austin and Houston depending on the severity of that specialty and he will see 5 therapists at school and 4 therapists outside of school that I will take him to. So yes, I spend loads of time at the hospital or in an office as well as loads of time (I'm talking hours) on the phone coordinating appointments, filling out paperwork, advocating for his needs, and navigating all of the financial side with the medical programs he is in.
While Daniel and I have handled most of these situations by ourselves since we don't have family in town, we are beyond grateful to our parents who pitch in and help as much as possible. We are so appreciative in their willingness to take off work to give us a helping hand during hospital stays and for all of their support.
I must confess the worst part of my job as a mom and Max's primary care provider is all the clean up work I do. I can't even begin to describe the amount of diarrhea diapers this kid has in a week that gets EVERYWHERE. Most of the time this poor little guy's body can't be awake when he goes to the bathroom, so he has to sleep in order to poop...or I have to vent his tummy to allow him to burp if he is screaming in pain or gagging too much.
I have to change his sheets almost daily from accidents. If my day is crazy busy and I don't get his bolus feeds in through his g-tube (which is like bottle feeding every 4 hours still at 3 1/2 years)...then I have to put him on a feed over the pump at night. Of course, there are times something goes wrong and we feed the bed...
 No worries, my janitorial skills are top notch now :). So while reading all of this, it may sound depressing or sad...but I have the most glorious news for you. This life, the adventure we are on learning about raising a special needs kid is all worth it...every.single.moment. All of the doctor visits, the dirty clean up, the emotional roller coaster, the pushing through therapies for him to reach growth, the grief, the unknown of the future is worth it for the pure joy Max brings to our lives. He has taught our family how to live presently.
(Look at him sit up all on his own!!!) He has taught us how to rejoice in the small inchstones of life. He has taught us to throw out expectations and comparisons because all that matters is where we are right now. He has taught us how to persevere and push through our obstacles and/or pain to reach new goals.
 (Yes friends, he finally learned how to climb the stairs all by himself!!!) Daniel and I couldn't be more proud of our Mr. Max. We know we have a long road ahead of us, but with his constant joy, infectious spirit, and desire to grow...we are blessed that God placed him in our family.
(Do you see that?!? Max actually let us put small amounts of ice cream up to his mouth!!! Reminder, this is the kid with such a severe oral aversion he won't eat anything by I praise God for the suffering I have faced with Max... I praise God for the beauty of simplicity and call to live presently that Max teaches us daily...I praise God for revealing himself through Max's life. I once read a quote somewhere that said, "The special needs journey is not one I planned to take...but I sure do love my tour guide" :). I say amen to that...I kind of think we have the best one of all!


  1. I love you and your precious family! :) I am missing you like crazy lately!

  2. What a blessing - for Max to have you for his parents...Love y'all...

  3. Keep going !!! A lot of people are praying for you. You are a fantastic family. There is a lot of love there !

  4. My mouth dropped open at that last picture, since it wasn't so long ago you were telling us he wouldn't take anything by mouth. Wow!