Special Needs Spotlight: Presley

I feel like such a lucky Momma! I have 2 beautiful girls, Presley and Charlotte, who my hubby and I love sooo much!  Presley has was born with SMARD, though she was not diagnosed until she was 2 years old, and by that time we were pregnant with Charlotte.  Although Charlotte does not have SMARD, it is a 1 in 4 chance that each baby my hubby and I have will have this disease.  Here is a little more about Presley. 

Presley turned 3 years old in July.  She is a very happy, spunky, silly little girly girl!  She is so smart and so patient and the best big sister!  She inspires so many who know her because of her strong spirit and silly happy outlook on life!  We did not know anything was wrong with Presley til she was 6 months when we discovered she had weak hands and feet.  We had done lots of genetic testing but never could find what she had.  Strong and determined, Presley hit all of her milestones-though she worked harder than most to get there!  She was even walking with a walker and starting to take steps on her own!  When Presley was 19 months old she got sick with RSV and went to the hospital where things got bad fast.  To make a really long and awful story short, we spent from February to May in Primary Children’s trying to get her breathing right again.  In April we discovered her diaphragm was paralyzed and we ended up doing g-tube surgery, got her trached, and scoliosis surgery all in a months time.  She smiled through it all though!  She gives me my strength!  After her back surgery she had a hard time standing and since then she has been in a wheelchair.  She now drives her very own pink powerchair everywhere and is loving it!!  She has to be hooked up to a ventilator 24/7, and uses a cough assist machine and a suction machine to keep her lungs clear since she cannot cough anymore.  She also is fed by a g-tube now.  I hate what SMARD has taken from her.  She tells me all the time, “Presley walk all by-self.”  Breaks my heart.  I want so bad for there to be a cure or treatment in her lifetime.  This disease is progressive and it makes my heart ache to think of her getting weaker over time.  I want her to get stronger!  I want her to breathe again!  And eat again!  And walk again!  I never want anyone to have to go through this with their child.  I never want anyone else to lose their children to this awful disease.  I have hope that we will see a treatment one day!  But even still, Presley is just a normal little girl who breathes a little different!  🙂  She is our inspiration!  Both of our girls are just the light of our lives and we feel so blessed.  To read more about Presley you can visit 2pinkbutterflies.blogspot.com. 

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Mindy:  I think a lot of people go through a mourning phase.  I was no exception.  I cried and cried when we realized this was not a simple fix.  When we first found out there was something wrong at about 6 months old they still did not know “what” it was.  They told me it could be as simple as weak feet and hands or could be as severe as losing the ability to swallow and going blind or organs failing…to maybe cognitive stuff…to maybe she would not live to be over a year.  I was devastated.  I prayed the hardest I have ever prayed in my life, begging and pleading with Heavenly Father to please, please just let me raise her.  I told Him I did not care what challenges lied ahead as long as she was happy and with me.  It may sound selfish that I wanted her with me so bad, but I just had this feeling that she would still be the happiest little girl and she had such a sweet and strong spirit.  I knew she would teach me more than I could ever teach her.  So I guess when I knew the future was undetermined I tried not to be disappointed or mad about it.  I was going to be content as long as she was with me and happy, no matter what.  When we found out it was SMARD at 2 years old and she would not breath without a trach and vent and that her muscles would continue to get more and more weak as she grew older I did the mourning thing all over again.  I was mad, sad, numb, grateful and content, then mad again only worse.  I cried A LOT.  It didn’t help I was hormonal and pregnant with my 2nd at the time.  Looking back I understand why I went through those phases.  I still do have days where reality hits.  But I realize more and more as she gets older that I have to be strong for her and that positive is the only thing I want her to see.  At first it was a challenge to smile all the time.  Now its become a habit and I am genuinely so happy and grateful that Heavenly Father answered the prayer I said 2 1/2 years ago when the future was so undetermined.  So grateful.  She is the biggest blessing to our family.  Always has been, always will be.

Mindy:  Life has changed a lot!!!  Since being trach/vented we don’t go anywhere from Nov-April to avoid respiratory illnesses.  We are home bound during those months.  When summer does come I cannot go anywhere alone with my girls.  I have to have a nurse or my husband to drive while I sit in the back with Presley so I can suction her when needed.  In fact I still have not been able to even go to the park alone.  I need someone with me anytime we go anywhere. We have nurses that are at our house all night long 6 nights a week watching her while we get sleep.  One night a week I stay up with her myself and it is pretty exhausting.  She has feedings that need to start on time every 3 1/2 hours.  Her sat. monitor needs to be hooked up all the time and probe changed every 2 hours.  I need to watch her ALL the time because she chokes and needs suction, or coughs at any given moment.  Her trach can pop out very easily which results in her turning blue and collapsing lungs immediately.  She has a lot of equipment.  It was overwhelming in the beginning but it has become the norm for us, but we still do have daily reminders she is fragile and we cannot take our eyes off her.  I carry a video monitor that watches her sats. and face even when I go start laundry or go to the restroom. 

Mindy:  I worry constantly…about her trach popping out and me not noticing until its too late, about going to bed at night and trusting nurses to watch my daughter, about equipment failing or battery backups failing, about her getting a plug that I can not get out that would block her airway.  I worry about her breathing all the time since its her equipment keeping her breathing.  I also just want her to be happy–I want to make sure I am being a good mom to her and that she is confidant and smiling. 

Mindy:  One time we were at the aquarium Presley was throwing a major tantrum cause she did not want to look at the penguins anymore, she wanted to see the snakes!  I was talking to some random lady who seemed interested in Pres and while Presley was throwing her huge fit and trying to drive off the lady asked me, “What’s wrong with her?” I said, ” Oh my,  just having a 3 year old fit hahaaa , and trying to drive off!”  The woman looked at me strangely and I could tell she was confused.  My mom was with me and said, “I think she is asking her condition…”  OOOOHHHHHH!!!!! I am so used to her trach and machines and chair that that’s almost the last thing I had expected her to be asking, haha.  I then tried to tell her about SMARD, but Presley took off in her chair on speed 3 so I had to run after her!  I get little things like that a lot.  Kids will ask, “What’s wrong with her?”  And I look at Presley who appears to be happy and content and say, “Nothing? She seems happy to me…..” I know what they mean but sometimes its nice to not get into it and just keep going.  🙂

Mindy:  Honestly I do not get offended easily.  I know people for the most part do not mean to say the “wrong” things, and I never want to show Presley how to respond to questions or looks in the wrong way.  The worst for me is when children over 8 or so say things to her or me that can sound rude because of their age they are not very tactful, haha!  I have heard “She is dying,” and “Ewe, what is wrong with her???” And thats when I get upset.  I don’t show it, but inside I’m fuming and thinking, “I would like to talk to your parents!” Haha.  I know its just kids for ya though.  I think the best advice I have is to talk to your children about special needs.  And how its not gross or weird or awkward.  Its just another kid who breaths different, walks different, talks different, whatever the condition is.  Use a situation like seeing a girl like Presley driving her chair with a trach to say to your kids, “Look at that beautiful girl and how amazing she is at driving that chair!” You don’t have to get into some whole spiel, just teach them that they are beautiful and talented and a child of God too. 🙂

Mindy:  Not to judge others. I used to think, “I would never do this or that” or “I could never do this or that” and wow, now I know that unless you are in those shoes you cannot judge.  I’m not just saying about parents with special needs kids.  I’m talking anyone, in any situation.  Anywhere.  We cannot judge.  You really never know what someone is going through. 

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