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Notes to the Younger Me

I often think back on my life and realize how God has prepared me for so long to be a special needs mom.  During last night's insomnia, I was thinking about what I would say to a younger me.

17 year old me, it's not by accident that you are working with that student with special needs and a trach each day as a guidance office assistant.  God is exposing you to trach life and allowing you to see how much more there is to a person than his or her special needs.  You are able to see that having a trach is just another way to breathe, and it's not as big of a deal as it seems.  You will draw upon that often in the first few years of Abby's life.

Young, married, pregnant with your first child me, you sat on your old couch one night in your tiny little house and told Matt that you felt like God had called you to be a parent of a child with special needs.  You didn't know what that meant at the time and wouldn't for nearly four more years.  Matt will remind you of this conversation when you receive Abby's prenatal diagnosis.

To the me sitting in the chair next to your husband talking with the neonatologist for the first time at University of Maryland Medical Center, this is just the beginning.  Receiving that Pierre Robin Sequence diagnosis is the start of your new life.  You will never forget the doctor's warning that there could be more to her diagnosis and we really wouldn't know until she is born. 

Me sobbing in the middle of the night next to a two-day-old Abby struggling to breathe, I see you.  I know how terrified you are.  You will cling to the words of hope that angel Nurse Megan gives you.  You don't know what the next day holds, but you know that you gave your girl the middle name of Joy for a reason. 

To the me surrounded by a mountain of medical supplies that you have no idea what to do with on Abby's very first day home, I know you are feeling overwhelmed.  Just the idea of leaving the house makes you want to scream.  You don't even know what half of these supplies are, but you will.  You will become an honorary doctor, nurse, respiratory therapist, physical therapist, and occupational therapist for Abby.  You've got this!

Me holding a four year old Caleb as he cries, "How long will we have her?" your heart just broke into a million pieces.  You already knew your boy was wise beyond his years, but the fear and heartache Caleb is carrying wrecks you.  You begin to get glimpses of the anxiety that plays a key part in his personality and learn more about what he needs in order to feel secure.

IEP warrior me, you are ready to do battle to get what Abby needs in order to be successful in school.  You help school officials to see that sometimes they just have to think outside of the box.  You are incredibly thankful for the support of the SLES staff and their willingness to go the extra mile.  When you learn that Abby's one-on-one will be Mrs. Danielson, you know that she will be wonderful.  Girl, you had no idea!  That woman is amazing and you will be SO grateful for her in the coming years!

Me holding the Make a Wish application and questioning whether we really "qualify" for this, YES YOU DO!  There's a stigma with Make a Wish that makes others think Abby is near the end of her life, but get over that super quick.  Enjoy every second of that trip, because you will need those beautiful memories to get you through the rough times in the next year.  Be thankful that you took that trip when Abby was at her healthiest and able to enjoy it to its fullest.

Anxious me having my first big panic attack in the car, triggered by the thought of germs around a fragile Abby, you will get through this.  Do your grounding technique, get yourself a fidget, take a few puffs of your inhaler, repeat a Bible verse about anxiousness, and ride it out.  This will be your first of many, but you will eventually learn how to feel one coming on and will usually be able to address it before it gets out of control. 

Present day me, I know you're feeling overwhelmed again.  Just look back at all of these other times when God has carried Abby through a difficult time.  You thought it was too much then too, but you made it.  God will give you grace for the moment just like He has every other time.  He will take care of Abby now, because He loves her even more than you do.


Comments

jan said…
Words from your deepest self. Beautiful to look back. God has it all in control. Love and prayers coming your way. Jan Maksim
Diane Wolfe said…
Julie, thanks for sharing your look back over your life and letting us see the beautiful relationship you have with God. God holds our specials needs children in high regard, such a blessing to have them though the tough and the joyful times alike! Diane
Unknown said…
I draw strength each day from reading your blog. Keep going momma ❤️
Julie Simpson said…
Abby is strong like her mom! Praying for all of you!!
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