Special Needs Spotlight || Silas

Hi!  I’m Allison, wife to Sol and mom to Silas our super rare #smalldude.  Sol and I are two small town Nebraska kids who now call Kansas City home.  He loves CrossFit, I love Starbucks, and we both love our little medical mess.  Silas was born with a rare genetic abnormality called 9p23 deletion 16q trisomy.  It is so rare that it doesn’t have a name and isn’t classified as a syndrome (that we are aware of).  Our little guy is quite complicated, but I will try and make things a bit easier to understand.  He is missing information on the short arm (p) of his 9th chromosome and has duplicate information of the long arm (q) of his 16th chromosome.  The additional piece of 16 is attached to the 9th chromosome where the information is missing.  This makes for an unbalanced translocation which has caused many anomalies throughout his body.  This “mix up” is de novo (new in him) meaning we are not carriers and won’t pass this abnormality on to future children.  We are currently enjoying being first time parents and taking things day by day as we navigate through the special needs world.  You can join us in our journey by following Mighty Si #smalldude on Facebook (www.facebook.com/smalldude).     

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Miggy:  Allison, thank you so much for being here and sharing your story today.  Can you take me back to the day you knew you Silas would have special needs?  Was this at an ultrasound, at birth or sometime after?  Do you remember how you felt?  Can you compare those first thoughts and feelings with how you feel now?

Allison:  During our 20 week ultrasound, we found out that Silas’ stomach was not very big and they were having trouble seeing it.  Then we were sent to a perinatologist’s office, where we were told that our baby’s heart was abnormal.  From that appointment on we had many different tests and ultrasounds and more negative reports.  We chose not to do an amniocentesis because it wouldn’t change the outcome.  We did have a blood test done (Harmony Test) that screens for Trisomy 13, 18, and 21 which came back normal.  Since we did not do the amniocentesis we didn’t really know what was going on with Si until after he was born.  After learning that Si had all of these issues, we were obviously completely devastated.  This went from being what was supposed to be one of the most special, best times of my life to the worst.  Every day, I prayed and prayed that all of these things were structural and could be fixed and of course I hoped they were wrong.  On May 3, 2013, Silas Solomon was born with many congenital anomalies confirming a lot of the diagnosis he received in utero and also confirming my worst fear – chromosome abnormality – not fixable, broken, nothing we can do.  I completely shut down and was very distant, depressed and angry.  As a first time mom, you expect there to be this amazing connection but there was nothing and it was like this for a very long time.  This wasn’t the perfect child I was expecting and the grief was so heavy and relentless.  Thankfully, I have an amazing family and great friends that stuck by me through the darkest, saddest times.  I think back now at that time and wish I would’ve known that everything was going to be OK.  

Miggy:  Explain how Silas’ needs affect your day-to-day life?  

Allison:  Currently, Silas is a pretty easy going little guy!  Our lives significantly changed when he was approved for in home nursing.  Sol and I both work and knowing we aren’t going to get a call to pick up a sick child every other day took a huge weight off of our shoulders.  When Si is ill, it sometimes takes weeks for him to fully recover and sometimes he even requires oxygen.  We are so fortunate to have the opportunity to be able to work and know our son is being well taken care of during the day.  Si is also non mobile and gtube (feeding tube) fed making for two of the biggest challenges we have faced in this season of our journey.  At this time he eats nothing by mouth and usually gets fed 5 times a day via gtube which generally takes 45 min per feed.  This isn’t a huge deal but it definitely has deterred us from doing certain things and going places when we know we have to pack his food, he’ll have to be hooked up, and there really isn’t a good place to put him.  Since he has graduated from his infant car seat and can’t sit independently, things like shopping or going out to eat pose problems.  It’s the little things we take for granted, like eating and sitting, that seem to be some of our biggest day to day issues.  Lastly, I can’t leave out the appointments!  Yep, every medical momma knows this is one of the most exhausting aspects of having a special needs kiddo, especially if both parents are working.  I’m pretty sure I cried when I got our list of first follow-up appointments for Silas, but somehow we’ve managed to make it work!

Miggy:  What are the biggest worries you face for Silas?    

Allison:  I worry all the time about Si.  Sometimes I worry too much because I know too much and other times I worry because we just don’t know enough.  Due to Si’s diagnosis a lot of things are unknown and there always seems to be a lot of grey area.  One of my biggest fears/worries as a special needs mom is that something would happen under my watch and I wouldn’t know what to do and ultimately not be able to save him.  Seeing your child struggle to breathe will put that type of fear in you.  I always feel like I am waiting on the next thing to present itself.  What is going to be the next issue to arise and will this be the something that will take his life?  Are the decisions we make for him going to be the right decisions?  Of course you have all the scary medical issues that you worry about, but there are also some of the more normal worries like will he have friends, how can I ever send him to school, did he poop today?!    

Miggy:  Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?   

Allison:  I don’t necessarily have a funny story, but we would always joke about using Si’s oxygen to give us a boost if we were ill or needed a pick me up.  Thankfully, no one has needed oxygen recently in this house!

Miggy:  How can people best approach or respond to Silas? Is there something you wish other people knew so as to avoid awkward or hurtful situations?  

Allison:  Silas is a pretty approachable guy.  He also is only two (in a couple months) and is definitely not shy!  We haven’t run into too many awkward or hurtful situations, probably because of Si’s age, but I’m sure the time will come.  In fact, I’m guilty of making things more awkward by introducing Silas followed promptly with “he has special needs”.  I think I do this in hopes that it will avoid some of those awkward/hurtful situations.  I think for us, things get awkward when the “milestones” conversation comes into play – no Si’s not eating by mouth, no I don’t know if he’ll ever walk, no he isn’t talking, no he can’t sit, etc.  CRICKETS!  It’s awkward, but yet I’m not really offended by it because it is what it is.  I have to always remember that if I wasn’t a special needs parent, I would probably be that person asking those same questions!

Miggy:  I know that before I had a daughter with special needs I had a lot of ideas and assumptions about what it would be like to have a child with special needs.  Naturally, a lot of those ideas have changed.  Are there some ideas you had about having a child with special needs that have since changed? What would you like the world to know about being Silas’ mom?

Allison:  When I found out Silas was going to have special needs, I pretty much thought that my life was over.  I remembered thinking he was going to be a shell of a person who was in a vegetative state (please don’t be offended this is my own ignorance!).  I was sure that I would need to quit my job, stop doing anything enjoyable, and take Si to appointments everyday/all day for the rest of my life.  I was also sure that this kid was just here to ruin my life (selfish much?!), but boy was I wrong!  Yes, having a child with special needs is hard and sometimes very isolating but Si has been the biggest blessing in disguise!  He has taught me so much in his short little life and has completely changed how I view people with disabilities.  He is his own person who has totally exceeded many of my initial expectations and made me realize that special needs children are people too.  They are people that have hearts, and feelings, and personalities.  I’m so thankful that he has opened my eyes and my heart and I’m proud to be his momma.  

Miggy:  What is the biggest lesson you’ve learned since becoming a special needs mom?

Allison:  Oh my, do I just have to pick one?!  There are so many lessons that I’ve learned since becoming a special needs mom.  I would say that the biggest lesson I’ve learned is that we are not in control and sometimes the plans we have for ourselves are not the plans that God has intended for our life.  It’s been very hard to see many of the dreams I had for my child and my family slip away, but it’s also been very amazing to see door after door open with new friendships and opportunities for our family.  This isn’t how I imagined my life to be, but by ultimately trusting in Him, I know everything is going to be okay.

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Allison, thank you so much.  Silas is a cutie-pa-toutie!  So my favorite part about your spotlight was your raw honesty.  I think it is not an uncommon experience to feel like life as you know it is over when you first find out that your child has special needs. It can be so hard to wrap your mind around! And while life certainly does change, as you know it’s not the doom and gloom you imagined.  Yes there are very really struggles and difficulties, but the love is very real as well.  I’m so glad you spoke your truth because that is what helps others come to see that having those thoughts doesn’t make them a horrible person once they know and accept that, then perhaps they can begin to open their hearts and minds to more love and understanding.  Also, yes to being open to the life God has in store for us…. I mean really, who’s life goes exactly as planned anyway?  Thanks again Allison and please give your cutie Si a squeeze from me.  

Sometimes I’m still amazed at how much I take in and learn from each spotlight. For me, these never get old and always feel like a I’ve cracked my brain and heart open just a little bit wider each time.  So please keep ’em coming!  If you or someone you know would like to participate in the special needs spotlight please email me at thislittlemiggy at gmail dot com.

Have a great weekend!