Saturday, June 28, 2014

Why Utah Kids?

I suppose an introduction is due.  My name is Syndi Knowlton.  I am the mother of 3 special angels.: Emily (18), Thomas (14) and Isabelle (9).  All three have special needs.  I had countless people give me a snarled look asking why anyone would be so dumb to keep having special kids.  My answer is complex:  Isabelle was diagnosed in May of 2007.  I will never forget my cell phone ringing at 10:14 am as I am merging on to the highway.  The dreaded words:  Rett Syndrome.  I pulled over and sobbed for a very long time before I could pick up my phone.  I wanted to check; Did I really just get that call?  Sadly it was all true.  My day only got worse.  My son had an appointment at 2 PM *THAT DAY* where we finally were confirmed that my son has Autism.  It wasn't until 2012 that Emily was diagnosed.  So if you followed my children above, our diagnosis's started from the youngest to the oldest.  Besides, how dare anyone question why I would have my amazing super heroes.  

Because the diagnosis's were slow, it left a lot of questions and frustrations trying to get to the diagnosis.  I should be grateful that we have the diagnosis's.  Many people aren't so fortunate.  I would pull a piece of info here,  another contact there.  It was more exhausting than just coping with the symptoms without a name.  I found a group on Yahoo called Utah Kids.  My understanding this was the brainchild of my now friend Diana Sagers.  It was in coordination with the Utah Parent Center.  As technology and social media evolved, I chose to open a group on Facebook in 2012 simply called Utah Kids.  It was a place for other special needs moms to talk about our children without judgement, find doctors who were helpful, and often supplies that were needed in a pinch.  Fast forward to today.  We now have 1.040 parents in our group!  

Utah Kids Foundation is being created for several reasons.  First, to continue to be a place that is safe to discuss things that our "normal friends" cannot understand.  Second, we now have bracelets to identify each other in public.  I have a love/hate with social media.  I love that it reaches so many but I hate that it fosters an introvert lifestyle.  If I see a mom at a local hospital with our bracelet on, I am instantly introducing myself and offering a listening ear.  Perhaps we meet up for dinner in the cafeteria but without a way to know one another, we would never get together.  The next step in our mission is to fully launch Mommy Care Packages.  These will be ordered on our website.  Personally, if my child lands in the hospital I recall they need their comfort items, warm socks and movies.  I always forget that I might want a shower, need a notebook, or a desperately needed Diet Coke when leaving the room is not an option.  Our Mommy Care Packages will not only be delivered, but it gives the parents a chance to interact with another parent and not just the medical staff.  Lastly we are working to create a catch all database of all things special needs.  A calendar of events in the community that are special needs friendly. Information sheets on all procedures.  A database of all non profits in the community.   

 No parent should be alone in our journey.  There is always someone to listen.  We've got your back.  

I am immensely grateful for the support in launching this dream.  I couldn't do it without many supportive community members.  Utah Kids is built on love, sweat and tears.  Come rejoice with us, and cry when things go terribly wrong.  It's usually a ton of laughs in the reality of our amazing new journey.  To find out more about us, visit us at www.utahkidsfoundation.com 

Sunday, June 22, 2014

Stickers Doctor Asks a Question

Today the pediatrician asked me about how and when Jack was diagnosed with his syndrome and with autism. Apparently, in their practice which encompasses the entire valley, two more patients now have Macrocephaly Cutis Marmorata Telangiectasia Congenita Syndrome.
Whaddya know, it’s big time now.
I recounted the story of figuring out Jack. We talked about pediatricians and specialists and office/hospital support staff who are either a) irritated by special-needs families who don’t fit neatly in little boxes or b) helpful and caring about special-needs families & who don’t expect people to fit in little boxes because boxes are silly and these folks are here to assist in a real way, however necessary.
We talked about the surgery schedulers at the children’s hospital who expressed annoyance at toddler Jack playing with the same electronic toy over and over for several hours (the surgeon got behind in his queue of surgical cases) in the pre-op waiting room while Jack played quietly, fasting.
We talked about the pediatric dermatologist who spent less than three minutes in the exam room with us, her hand on the doorknob the entire time, before leaving and having the residents explain what Cutis Marmorata Telangiectasia Congenita meant.
There were other vignettes like these, but they make me glum when I think about them. I told them to the pediatrician, and now I’m done with those stories.
We also talked about Dr. P, our pediatric ENT who routinely cleans the gunk out of Jack’s sickly ears, gives us hope that they will improve eventually, and always acts genuinely pleased to see us. We talked about Dr. H, the pediatric gastroenterologist, who was the first person to ask me about Jack–not his medical condition or his behavior–but rather his personality and his strengths. Appointments with her are fun and Jack-affirming.  Dr. C at the orthopedic children’s hospital treats our family like the highlight of her day, like we are a fun family, not a problem family.
While I talked, Dr. M listened and then found fluid draining from Jack’s cursed left ear. We left his office with stickers in hand, a plan for treatment and prevention, and a sense of mutual understanding about what people like Jack and me really want.
Here it is, we figured it out.
The thing that people want, especially when they are sick and struggling (or watching their kid sick and struggling) is this: just kindness.
Kindness heals.

Thank you Megan for our guest blogs.  No part of this post may be reprinted without a dfirect link back to this post.  For more information on Utah Kids, please see us at www.utahkidsfoundation.com

Sunday, June 15, 2014

A Tribute to Special Needs Fathers

           Father’s Day is such a beautiful and perfect day to reflect on the men in our lives who care for us, provide for us, and protect us. These men, whether they be Fathers, Grandfathers, Uncles, Brothers, or friends; each provide a substance and clarity to our lives that we cannot live without. Their presence and love is irreplaceable. They are our heroes.
            Today I wish to write especially about the extraordinary men in this world known as “Special Needs Fathers”-specifically My Hero: My Husband.
            On February 17, 2013, Blake and I were blessed with one of God’s most special spirits; Londyn McCall. At 32 weeks pregnant I felt there was something not right with the pregnancy. After an ultrasound we were able to determine that I had low amniotic fluid and that it may be in Londyn’s best interest to deliver her at that time. Before we decided to deliver her, our doctor had us meet with a parenatologist to see if he was making the right decision. At that appointment we were told that our precious baby had had a massive brain bleed within the last two days. We were told that she had a 50/50 chance of being severely handicapped or living a normal healthy life.  About two weeks later I ended up back in the hospital because of severe pre-eclampsia. Our doctor ordered another ultrasound and then called us to a meeting right away. He told us that the trauma that Londyn had suffered was far too severe for her to make it in this life. He told us that there would be no way that she could live and that we would likely only get to have her with us for a few minutes.
            It was in that moment in time that I realized that the greatest man I have ever known was sitting right by my side. We were both devastated. As I sobbed uncontrollably, Blake held me and promised me that he would do everything in his power to help me be okay. He promised he would get me whatever help I needed to survive this horrific tragedy. He held me all through the night as I cried and all through the next day. He never left my side. Although he was in excruciating pain, he put my needs before his.
            A day later, we met our Miracle baby; and to everyone’s astonishment, she was alive! She was breathing on her own! She was even sucking on a binkie! The pride and love that I saw in that new daddy's face as he burst through the operating doors to let me know that Londyn was alive and well, was one of the purest things I have ever been privileged to see. Did he know that Londyn was going to have problems? Absolutely. Did that change his love for her? I believe it absolutely did; he loved her even more that he could have ever thought imaginable. He has always been the most proud father, and it brings such happiness to my heart to see the love he has for her.
            From the moment she was born, Blake has been nothing short of amazing. During the time that our life went array, Blake was working two jobs and had 15 credit hours in school. He had every right to drop his school, even drop a job, but he didn’t. He did everything he could to support our family, all without ever complaining. He would come to the hospital every moment that he could to spend time with his angel and support me.
            After Londyn came home from the hospital, he was the biggest help to me- whether it was helping to warm bottles, change diapers, or cook dinner, he’d do it. There was a point in Londyn’s life when we had to wake her up every 3 hours to feed her-night and day. It would take at least an hour to feed her, sometimes two. Blake would help me feed her every single night and then he would get up at 6:00am to go to school. He makes every effort to be at Londyn’s important doctor appointments. Whenever he comes home from work, he instantly begins helping me with her. Most of all, he has given the most beautiful, unconditional love to the most perfect little human I know. When I see the way that he loves her, my love for him grows more than I ever knew possible.
            A few months ago, Londyn finally received a diagnosis. She has a very rare syndrome called Ehlers Danlos Syndrome, Type 6a. It was definitely not what any parent ever wants to hear. It was heart breaking and unfair, but none-the-less, we were grateful to have answers. Blake has been my shoulder to cry on, my confidant, and my counselor. He has helped me to try and sort out some of the confusion, frustration, sadness, and anger that I feel. He has stood strong when I no longer could. He is my soul mate and my perfect other half.
            Through all of the triumph, the tragedy, the unknown, the answers, the happy, the sad… I have seen the toll that it has taken on his very tender heart. I have watched him fight his hardest battles with his inner self. For all Dad’s and men in general- I believe they feel they are the protectors.  They are the fixers. When something is wrong, they make it right. When something is broken, they fix it. Unfortunately for these special needs dads, they can’t fix their broken child. They can’t change the unfair things in this life, and I know they would do absolutely anything to make things right for their child. I see how much it tears him up inside to face this daunting truth. I see the sheer physical and emotional exhaustion from all of the worry, the anxiety, and the stress that comes from providing and caring for a special needs child.
            I have watched as both of our dreams and aspirations for Londyn have changed. We celebrate even the tiniest milestones that she achieves.  We have learned to not take anything for granted. We have learned what matters most in this life. We live for the day when she will some day be made whole again.
            My husband is my hero. He has never sat back and just “let me be the mom.” He has equally helped, parented, and nurtured our daughter and I could not be more grateful for the strength that he adds to my life each and every day.
            Today, celebrate all of those amazing men in your life. The heroes. The Dad’s. And especially, if you get the chance to see or talk to a “Special Needs Dad” please give him an extra hug, or strong pat on the back and recognize them for the extraordinary role that they play in the lives of our extraordinary kids.

MY DADDY, MY HERO

Before I was even a twinkle in your eye,
God picked you to be my Daddy.
He fashioned my body with a reason and a purpose
and He knew I needed you to help me through this life.

He knew I'd need your strong arms to carry me when I couldn't walk.
He knew I'd need your fun laugh to cheer me when I was sad.
He knew you'd sit with me for hours and cuddle when I felt sick.
He knew your adventurous spirit would make my life so fun and normal.
He knew I would thrive as you shared with me your love of the outdoors.
He knew Mommy needed a strong shoulder to cry on to support her through
tough times.

I do know that Daddies get frustrated sometimes......
because they want to 'fix' things and make the bad times 'go away'---
That's just the way God made Daddies!
I know you would do anything to make my struggles disappear.
I also know that you will always be my biggest fan!
You'll always be my hero!

We're a good team, you and me.
I'm teaching you about God and His eternal perspective.
You're teaching me to enjoy this beautiful life and our journey here on
Earth.
We've both learned to be thankful for the little things in life.
You and Mommy don't take any of my accomplishments and milestones for
granted.
I revel in the pride that shines from your adoring eyes.
I know that I can try anything if I set my mind to it--
As long as you are behind me to cheer me on and catch me when I fall.

I see glimpses of my Heavenly Father in your eyes......
the love, the pride, the pain and the unconditional acceptance.
I am whole and perfect in your eyes.
I am beautiful and charming in your eyes.
You don't care that I may not be just like all the other little girls......
That's why you love me so much!

One thing is for sure.....
I have you wrapped around my little finger and I won't ever let you go.
Thank you for loving me for who I am and for guiding me towards Heaven......
where someday I will run and jump and maybe even fly!!
I can't wait for the day when I am holding your hand and God's hand


and we are walking together into the sunrise of forever.......

- Brooklynne Pando
www.utahkidsfoundation.com
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