Crohn's Disease takes it's turn

September had arrived and we were not closer to any changes in V’s process. And we hadn’t received any notice of significant progress in bringing the boys home. I was feeling deflated. I had hoped to be able to bring the boys home by mid September at the latest.  By early September, I was starting to feel the signs that it was time for my regular course of Remicade. Crohn’s Disease is such an evil thing to experience. I was hoping that I would have the boys back in the U.S. in time for my regularly scheduled infusion. However, by the time the aches and pains started to set in, I was four weeks overdue for the medication.  I was coping daily with using topical remedies, like icy hot to dull the pain of inflammation. But on September 7, I took a hard fall down the staircase in my apartment and I realized that if my back wasn’t broken, it was time to get the infusion. I took a trip to the hospital in Port au Prince, Project Medishare, to have an x-ray. Thankfully my back was not broken. And luckily, I was able to meet and thank one of the many people who helped Veronika get the proper treatment that saved her life twice. It was at that hospital that my baby was given a chance to live again twice! Though I would have preferred to go there to spread my thanks under different circumstances, being able to say thank you was nonetheless a profound experience for me.  I decided it was probably a good idea to go home to the states to have my back checked out and to get an infusion. I made the arrangements to go home, but first I wanted to be in Haiti to spend Parker’s 13^th birthday with him. On September 9, I hobbled and carefully moved around but was able to spend the day with him and give him a small dose of birthday celebration. We had cupcakes. Though he was determined to tell everyone it was not his birthday, I persisted in telling him that he can change his name, but he cannot change his birthday.  On September 11 we found out that our extract had FINALLY been written. However, it still needed to be signed. UGH. Every victory here always comes with a “BUTTTTTTT we need eleven more things to make this document legitimate”…So on September 14, I flew home for my infusion hoping that upon my return we would have a signature and be well on our way to having passports in our hands.

Being home in Pittsburgh for a few short days was like walking through a dream fully awake. It was weird. I was so happy to see J and the kids, but it was that much more sad to experience a few days of what our lives should be. Knowing that I had to return to the struggle of trying to get to that point was so difficult. I infused, saw my Dr., and loaded up more baggage to bring back to Haiti and returned on September 18. Though the boys had been very well cared for by one of their favorite nannies, and had a few days of tv watching, game playing and freedom from mom; they showed me that they had really missed me. Parker told me that Djedly woke up one morning and said to Parker, “I really miss mom”. And Parker called me four times the first day to say that he missed me and loved me.  Apparently Veronika couldn’t wait to share her good news with me, but luckily Kelly caught her on video WALKING!!! After trying to get her to walk all summer long, she finally took the plunge and took her first independent steps the day before I returned. I had just purchased a wooden walker for her to the tune of $117 and another at Good Will for $2. So I instructed J to return the wooden walker and I packed the $2 one for her to use for added support…I can’t believe she started walking THE DAY BEFORE I CAME BACK!!! This is a huge sign of what I’ve always believed.  She will do things when she is good and ready.  Coming back was harder than I expected it to be. I was that much more out of patience than when I left. And NOTHING happened while I was gone. The extract was not signed and we were not going to see passports any time soon.

Impatiently waiting for our extract was a very difficult thing to experience. I’ve watched so many children “fly” through a system that I’m not even capable of crawling through. I watched a group of children leave for their passport photos one day and as I looked I realized that almost every single child in the group hadn’t even been born yet when my children entered the orphanage. This process is not fair. It is not linear. And it is so hard to let that sink in when you see the evidence so boldly presented to you in the simplest way. Such as a small group of unknowing toddlers carted off for their photos to be laminated in the all important travel book, a passport. They will all have the right and ability to leave this island before my boys will. And the harshest of these realities is that these children lacked a very important member of the group, my little v. she would have been part of this group if she had been submitted when her file was ready. She would have the right to leave this island before her brothers would. Instead she will remain here for likely a very long time. That sickens me.