Jenna 12 yrs old

Jenna 12 yrs old

Friday, October 17, 2014

A Mothers Heartbreak 

As I sit here reading over previous post it is hard to wrap my head around just what a long road this has been.  Things have not been great these past few months.  It seems every time we think we might be close to getting off these horrible meds its not soon that we find ourselves on even more.  I hate what this illness has done not only to my child but to the entire family.  Don't get me wrong we are a very close family and we are there for one another but everyone seems to be spread real thin.  Having two children with medical issues has not been an easy task.  I see my husband, he is tired not just emotionally but physically.  I don't think there are too many out there that work as hard as he does...he is a special breed LOL I don't know if he works because he feels that is his way of dealing with everything or he works to avoid what is right in front of him?  We all have our own ways of dealing with things and someone might look at the way I deal with things and not agree?  Who knows but I think that until they are in my shoes than all opinions should remain to themselves.  I have cried myself to sleep more nights than I can count.  I have laid awake trying to think of ways that I can fix things.  The worst feeling as a mother is to see your child in pain or sad.  I have tried everything I can think of to make things a bit easier for both of my girls...I think that they would agree that I have tired everything!  The one thing that I can't do is take away Jordan's cerebral palsy or take away Jenna's dermatomyositis, panniculitis, pseudo tumor or the depression that goes along with all of this!  You want so much for your kids to be healthy and happy.  These are suppose to be the best years of their lives!  Jordan is struggling with the demand of a student that is ready to graduate high school and move on to college and Jenna is struggling to just get out of bed in the morning.  

I have looked in the mirror and asked why?  Why my children?  Why now?  Why can't we find a cure?  So many what ifs...I don't think I will ever know the answer to any of those questions all I can do is continue to fight for my children, fight for what they need and deserve.  I just wish I could take the heartbreak away from them.  Jordan started her life off in the NICU and from there had extensive physical therapy, speech therapy & occupational therapy.  Once she was diagnosed with cerebral palsy she would then undergo many surgical procedures on her legs to help her walk better.  Jenna was diagnosed at age 5 with dermatomyositis and started a journey that has been like walking around in the dark trying to find the light switch.  The one thing that I can say about both of my girls is that they are both fighters and they have never given up!!!  I don't know if I could say the same if I were in their shoes.  Yes, they do get down and they have their "bad days" but for the most part they are pretty much the glass in half full types...unless you ask that question to Jenna these past few weeks she might say that the glass is empty!  Me on the other hand I don't know if I would have the same attitude?  I know that I could not have gotten though any of this without the help of my family & friends.  It takes a village to raise a child that I know for a fact!  There is no way I could ever do everything that is needed with two children that have medical issues.  From helping out with Doctors appointments, to therapy appointments to making dinners one would have to be wonder women to do it all by herself.  It seems with everything that is happening in the present I am having a real difficult time even processing what to do next.  Things never use to get to me the way they do now.  I use to be able to just go with the flow or in my case the rapids, but these past few months I feel like I am standing in quicksand and no matter how hard I try and pull myself out I just keep sinking deeper and deeper into the unknown.  

We are now on a new journey that will take Jenna to see a team of Doctors at the NIH in Bethesda Maryland.  Dr. Lisa Rider is one of THE top dermatomyositis doctors in the country.  I hope that she can come up with a treatment plan that is going to work for Jenna.  I hope that we find the answers that we need.  What I am so afraid of hearing from them is..."we don't know much about panniculitis or how to treat it but we can try this or that".  I have gotten my hopes up before when we traveled to Boston back when the panniculitis was first diagnosed and we were able to see a wonderful doctor at Boston Children's Hospital.  His response to us after the exam was..."well, you can try this".  We came home feeling like the wind had been taken out of our sail.  I guess that is why I have such apprehension about making another big trip.  It is so easy for someone else to say "oh yes you should go here or go there"  not that I am not willing to go to the ends of the earth for my child, I think it is more of what are they "really" going to be able to do for her?  I am going to keep a positive attitude and look at the glass as half full and pray that we fine some kind of answers.

For my Jordan she is on both an exciting but scary journey.  She will graduate from high school this year...which seems totally not real but totally is!!!  I can't help but look at her as my 4 year old that was struggling to walk with her new walker.  Why is it that I am finding it very difficult to let go?  I am terrified and I don't even know why LOL  I think it is because when I look at Jordan I see this 1 pound 12 ounce fragile baby that came into this world that I have had to "handle with care" and it is so hard to let her go out of MY comfort zone...she's fine with going to China, me I'm like "let's try something a bit closer to home" LOL.  She has turned into this beautiful your woman that I am very proud of.  She will do great things that I know!  I am so proud of her and everything that she has been through.  She has learned that this world is a beautiful place and there are so many wonderful opportunities but the sad part is that she has also learned that this is a very judgmental world that we live in and that people can be very hurtful by the words they say or the looks they give to someone they don't even have a clue about.

For me I am hoping that I can somehow find peace with all of this.  There are just so many changes going on in my own life, I mean really who has their thyroid removed and a hysterectomy all in one year on top of everything else???  My emotions were all over the place when I HAD all my body parts let alone lets take the 2 biggest ones out that control a persons emotions!!! REALLY?  If this is some sort of test by God I sure wish he would send me the progress notes so I know how the heck I am doing.  I mean I don't want to get a bad grade on life 101 that's for sure.  All kidding aside I really am in search of peace in my life.  I feel like I have been on the 405 expressway and can't find my exit!  Life is short and life is hard and yes nobody said life was fair BUT I just need a break.  I do love life and I am so blessed in so many ways with my family and friends and memories that I have made with them all.  I think we all in some way search for our meaning or purpose in life.  We all want to do great things in our lives but sometimes it is the little things that we are known for.  The one think that I want more than anything is for my kids to say that they has the BEST Mother anyone could ever ask for.  That is all I want.

I will continue to keep you all updated and try real hard not to let too much time go by before I update this blog again.  It is just taking the time to sit down, take a deep breath and let my thoughts out.  Thank You for listen to me.


  1. Really sorry to hear of your struggles - how difficult for both your daughters but they sound like amazing girls. I have Panniculitis and know how rare it is - would be very happy to speak to you of my experiences and what medications have helped/not for me. Lots of love Jessica

  2. I'm really sorry to hear about your journey. Nothing hurts more than not being able to do anything for our children. If only there was a way for us to take their pain and suffering from them.

    I too have recently been diagnosed with Panniculitis and am looking for answers myself; however, just as you mentioned, it is so rare that many doctors have had little of any exposure to it. I am seeing a rheumatologist soon as every time the Panniculitis flares up, I get hit with severe body aches and high fevers. Not sure where this is heading...