The Long Journey Home

Today has been a transition day for us. Transitioning home. Transitioning to our new life. On the bright side, we were released from the hospital. Tyler was released for two reasons. First, he’s reached the max amount we can safely bump up his meds until a week from now. So he wouldn’t be getting any other medications at the hospital than what we already know to give him now and can do from home. Second, stress exacerbates Tourette’s. So the doctors were hoping that just moving him out the stressful hospital environment would help somewhat. It’s very challenging for Tyler to talk, and while we were at the hospital, when he could talk, all he ever said was, “When . . .  can . . .  I . . .  go . . .  home?” When Dr. Ng asked Tyler if he wanted to leave today, I don’t think I’ve ever seen a more excited and vigorous head nod in my life! He was joyful. And relieved.

However, Tyler is still in a terrible situation. His tic evolves slightly every day. Right now it’s more of a yelling outburst with a jerking of his head. He also often swallows air at the beginning of the tic, which is causing him lots of gas pain. The tics are still constant. One after the other after the other. It never stops. In fact, I would say today it’s pretty darn bad. One of the worst days we’ve had. I tell him all the time how courageous he is. Never does he complain (except to tell us he hurts). Never does he ask why. Never does he get angry. He’s such a sweet, sweet kid.

So now lies before us the long journey of living daily life with a child who has severe Tourette Syndrome. Now that we are home, we are beginning to realize just how big of a task lies before us. How much constant care Tyler needs. How much all our five other kids need extra encouragement now. How difficult it will be to work, to parent, to manage household needs, and to do anything “normal.”

Please continue to pray for Tyler. It’s heartbreaking to watch him go through this. I think it’s hardest when he’s trying to tell us something and we just don’t understand him through the tics. It’s so frustrating for him and us.

God’s grace has always been sufficient for us. He has met us at the point of every need. Right now, it’s hard for us to think past the present, but his grace is here at every present moment. Please pray that we are constantly aware of the grace given us for each moment.

For those who have offered help, we will take you up on it. Message me on Facebook.

Thank you all.