Wednesday, September 19, 2012

Team Huddle

Today it dawned on me how much the statement "there's no I in team" relates to Alex's journey with arthritis.   Yes, she is the one with the disease but there are so many there behind her to help us get through it.  Let me introduce them to you.....

Family: Yes, of course her dad and I are part of her team and even her brother and sister (sometimes, ha).  But let's not forget my parents Sue and Tom.  Did you know that it was my dad who drove us down to Children s Hospital and stood beside me as I learned to give Alex her first shot.  My mom is always telling me about new things she has learned  regarding arthritis and probably Alex's #1 cheerleader! She even offered to call me every Wednesday and Saturday night just to remind me to give Alex her shot! Amazing!

 My extended family including my brother Mike and his wife Stephanie, my cousins Tricia, Sue, Lynne, Karen and Eddie and aunts Anne, Peggy and uncle Ed...they have all been so awesome in praying for Alex and keeping updated on her treatment.  We love and appreciate them all so much!
Dr. Llona Szer

Doctors & Medical Support: If it wasn't for our Pediatrician, Dr Lauren Choi, suggesting we get a second opinion from a rheumy even after ALL of Alex's tests came back negative we would have never known Alex had arthritis.  Or, we would have found out after much more damage was done to her joints!!  Our next angel was Dr, Llona Szer (pronounced sher or Cher), Alex's rheumy.  Now, we didn't see eye to eye at the beginning and I even left her office in tears once after she yelled at me for not taking things serious enough but boy do I love her now!  Not only is she the Director of Pediatric Rheumatology for Children s Hospital, San Diego but also the recipient of many awards and accolades! Alex adores her and I'm pretty sure the feeling is mutual since she is the one who nominated Alex for the Arthritis Foundation Honoree.  I'm already dreading the day when Alex has to find an adult rheumy....but I have a feeling we will be in touch with Dr. Szer forever!
Alex's team also includes an Opthomologist, dermatologist, physical therapist, and all the MRI tech's, the ones that draw her blood, the nurses and the appointment makers!

Friends & Co-Workers: As the mom of a child with an autoimmune disease I walk a fine line.  One side is living life as if nothing was wrong, all is great in the world.  The other is living in the throws of "why me?", "why my daughter", doctors appointments, needles, pills and frustration.  I try to live right in the middle.  Sometimes I fall over into the dark side and that is where you, my dear friends come in!  The friend that sticks out the most in my mind is Michelle Naegelvoort.  Michelle and I met when her daughter Alexandra (yes you read that right) and my Alex went to school together in K-1 grades.  My Alex left that school to attend one closer.  A few years later facebook arrived along with lots of friends I hadn't seen or heard from in years.  Michelle was one of them!  In fact, except for once in 2005 (i think) we have not seen each other in over 8 years (and she only lives 25 minutes away!).  So it turns out her son Dutch also suffers from an autoimmune disorder, so we have a lot in common.  Our kids go to some of the same doctors and have been on some of the same meds.   It has been amazing to have someone to talk to that has gone through exactly what we are going through and give great advice or just listen!   Anyway, our late night chats on fb mean the world to me and someday we will actually get away for our girls trip to Disneyland like we keep talking about!!
I have other friends too that are always there to support and listen! Girl Scout moms, school friends, church friends...the list could go on and on!

Support Groups: Yes, I belong to a support group....sorta.  There is a group of amazing moms online (facebook) that I have contact with on a daily basis.  The group is specifically for moms of kids with juvenile arthritis.  We are always helping each other with advice, comforting when something is going wrong or jumping for joy when a child finally goes into remission!  We are from all over the world...some from as far as Australia!  I think we would all agree that having this group has been one of the best things that has happened in this journey!  Someday we will have to plan a meet up!!

So, as you see I could go on and on.  My point in all of this is that Alex could not be going through this alone!  Each one of you hold a special position in the team.  You may be the play maker ,the star player, the ref or the one on the bench who gets pulled into the game when the going gets tough!  I can't thank you all enough!  And thank you for being part of Alex's Team!  Now it's time to go beat this!!!

1 comment:

  1. Pattie, this post made me cry! So true that it takes an entire team to go through what we go through on a daily basis. You have done an amazing job embracing this awful disease! {{HUGS}}


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