Back in 2007 before my children were diagnosed, I was a wreck. I was extremely depressed. Nothing in the world could make me happy. I was crying on my way to work every day. Yeah- every day. Aside from trying to raise my family, I had no idea of what else to do with my life- no clear direction. I was a mess.
After Emily was unofficially diagnosed with Juvenile Arthritis, I was lost... for a while. I felt hopeless. Until I stopped feeling sorry for myself and started thinking of how Emily must feel. After all, she was the one hurting... not me! I started researching, trying to understand this madness. At that time, she could barely walk. Almost every joint was affected. Her anxieties were extremely high. She didn't want anyone to touch her. She couldn't sit on the floor because she couldn't get up. Her kindergarten teacher carried her around school. Getting out of bed was a huge challenge. She spent more time in the bath than anywhere else. And she didn't know what it was like to spend a day out of pain.
Starting Naproxen gave her the first taste of normalacy. Not that it was enough, mind you. It took another 8 months to really feel what it was like to be free. It took 7 months of Methotrexate and then starting Enbrel to help her. Around that time, the Raynaud's started. This and some skin tightening made her rheumy feel that perhaps she had Scleroderma. Oddly enough, this was her good time. This was the closest she has ever come to remission. It lasted about a year.
This was also around the time that I realized that she really isn't mine; she was given to me, entrusted to us as parents. We all belong to God, like it or not. This is when I learned how to let go, and to trust. It was pretty tough. We faced her mortality in a way that no parent should have to. It was also around this time that suddenly, all around me, I was finding blogs of parents whose children had brain tumors. I didn't go out of my way looking for them; they found me. This helped me to see how blessed we were. This was also around the time that the little peeps and I went back to church, the only place I can go to cry. I felt that this was all a way of leading me back home to Him, and bringing the little ones to Him, too. He was showing me how He was taking care of us.
Emily's diseases have helped our family in so many ways. We went from being lost and out of touch with each other to being closer than almost any other families that we know. No, it didn't happen overnight. It took a lot of work and a lot of pain. We count our blessings. We look for the good in everything, because we know that time isn't guaranteed. The longer she is sick, the more medicines get added to her already long list. The longer she is sick, the more systemic effects pop up. The throat issue really scares me. I have heard of people that require surgery to reopen their throats. I hope to God that it doesn't come to that. I refuse to worry about things now until I know for sure that it needs to happen. We go day-by-day, and we have for so long that it is just habit now.
We expect the possibility that one of the kids will be sick daily, or too tired or sore to go out. It isn't because they don't want to go places, because they are usually disappointed when they have to miss out, or we rely on her wheelchair. They have learned to deal with it, and enjoy the good days. We embrace the good days, and just get through the lousy ones. I truly never know how any day will be. She is so complex. He isn't so much, but we need to be careful not to downplay his problems because hers are so much more severe. I try hard not to trample on his feelings. My sweet little man. <3 p="p">
In the midst of this, we have met some of the most amazing families! This has led me to having some of the coolest friends that I could ever imagine. Some I have never actually met in person! My Facebook friends that also have kids with similar problems have become like family. It is so wonderful to have these people in my life... even if I rarely get the chance to chat with anyone right now! (This, too, shall pass.)
I never thought that I would ever go to college, or even know what I wanted to do with my life. Now I have clear direction, and I am empowered by how much I have learned through my research. I would never have researched if first Emily, then Zachary, didn't get sick. I have learned all about Dermatomyositis, which took me months to pronounce, as well as Lupus, Scleroderma, Raynaud's, Psoriasis, Psoriatic Arthritis, Spondylitis, and other little things. I learned what patulous meant, (spreading widely from a center patulous 3>
branches, according to Merriam Webster), and I've learned about esophageal dysmotility and lung changes that warn of pulminary fibrosis. As crappy as this might be, it has given me a confidence that I never before had, as well as a drive and motivation that I did not have before. I made a vow to myself to be able to speak with the doctors on their level. I am 95% there. I am so much stronger than I ever thought that I could be. Ever. And the kids? They are way stronger than I am.
I never, EVER thought that I would be the type to homeschool my children, and yet here I am. Granted, it is out of necessity, but still... There is no way that she could continue on in public school. Just simply no way. She had such a difficult time last year, but that has led to such a great adventure! Now we have our butterfly garden, crabs and fish. We have science everywhere! Everything leads to learning. I love it!!! And we are in this together since I am also in school. We appreciate each other and love each other like we may not have long, because you just never know. I could get hit by a bus tomorrow. What regrets would I have? None. Could you say the same thing? Do you have your priorities straight? Life is too short to worry about competitions and material things when it comes to family. Drama is way over-rated. Who needs it? I don't have time for drama. We are ecstatic that October wasn't spent with a long stay in the hospital for a third year in a row. That rocks!!! Yeah! We are happy just to be here, just to be together. That is what matters, and I am thankful and blessed. Every. Single. Day.
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Friday, November 2, 2012
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Hi Danielle. I think, I mean, I know we have all come a long way. Funny how chaos can make you and your family stronger than they ever knew they could be. I believe God gives special children to special parents. HE won't ever abandon us and like you said, and I firmly believe this....our babies are on "loan" to us. We are their caretakers til the Lord wants them back by HIS side.ReplyDelete
Amen, Leslie. Not the way that I would have chosen to become stronger, but He never said it would be easy!Delete
I couldn't have said it better myself! You are a wonderful, dedicated mother as well as a guide for those of us who are just starting this difficult journey. When my daughter was first diagnosed with systemic JIA back in January I spent a day reading your entire blog and it inspired me to stop my pity party and become an advocate for my child and other children suffering from auto-immune diseases. Thank you!ReplyDelete
Thank you so much for your sweet words. It is people like you that keep me writing. I remember when we were newly diagnosed and how frustrating it was. I had such a hard time finding any info back then, and I wanted to talk to EVERYone.
I'm so sorry that you are struggling through this crap too, but I feel blessed that I was able to help you. You just never know who will be reading, and what they are going through. I totally believe in divine intervention. We are placed where we need to be, when it is needed.
Are you connected? Do you have a Facebook support network to help you through it?
Amazing post. Thank you for sharing. Hugs to all of you!ReplyDelete
Thanks, K. Love ya!!! Hugs back :)Delete