Skip to main content

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!!
Tucker Conrad said…
A GREAT SPELL CASTER (DR. EMU) THAT HELP ME BRING BACK MY EX GIRLFRIEND.
Am so happy to testify about a great spell caster that helped me when all hope was lost for me to unite with my ex-girlfriend that I love so much. I had a girlfriend that love me so much but something terrible happen to our relationship one afternoon when her friend that was always trying to get to me was trying to force me to make love to her just because she was been jealous of her friend that i was dating and on the scene my girlfriend just walk in and she thought we had something special doing together, i tried to explain things to her that her friend always do this whenever she is not with me and i always refuse her but i never told her because i did not want the both of them to be enemies to each other but she never believed me. She broke up with me and I tried times without numbers to make her believe me but she never believed me until one day i heard about the DR. EMU and I emailed him and he replied to me so kindly and helped me get back my lovely relationship that was already gone for two months.
Email him at: Emutemple@gmail.com
Website: http://emutemple.website2.me/
Call or Whats-app him: +2347012841542

Popular posts from this blog

Cerebrocostomandibular Syndrome

If you happen to pick up the latest Reader's Digest, there is an article in there about Piper Breinholt , a four year old with CCMS.  If you've been around here a while, you'll remember wayyyyyy back when we first received Abby's diagnosis that I was able to speak to Piper's mom, Reagan.  The article is more about their story and not as much about the ins and outs of CCMS, but I think it's probably enough to get some people googling it and I'm hoping a few will end up here. Every once in a while, I give a blog post the title of Cerebrocostomandibular Syndrome so that it would show up in Google.  My ever-present hope is that people will stumble across my blog and 1) be encouraged by the hope we have in Christ, 2) feel a connection with someone in a similar situation as them, or 3) get excited over the miracles that have been performed in Abby's life!!  (a combination of all 3 is great too!)  :)   Notice that it's not to get famous and it never wi

The Potty Man

Caleb LOVES to go potty! I have never heard a potty training story like this one....Caleb tells us when he needs to go, we take his diaper off, and he goes! Now, is it perfect? No, not at all! We aren't trying to potty train at at all, but we figure every time he goes is one less diaper we have to change! The only time we consistantly put him on the potty is when we give him a bath (he always pees in the tub, so we know he needs to go!) He almost always goes on the potty now instead of the tub though. When he's not "really" going potty, he's pretending to go potty! He's such a funny kid!

Lego Party: Favors

I'm a little slow in posting the Lego Party pictures, but I think I have a few excuses I could use.  At any rate, I wanted to share what I did for the party!  It will take a few posts, so stay with me.  I'll start with how I did the favors. These are the goody bags I made.  I just bought solid colored gift bags and matched scrapbook paper to each bag.  Then I punched circles and attached them with the 3D foam tape so that the circles were raised. I used the keychain (explained below) as a name tag on the outside. These are Duplo blocks.  I put a round magnet on the back and...voila!  A magnet!  (note:  hot glue doesn't work so well...I ended up reglueing them with my apoxy because the magnets fell off.) I made crayons using Lego man crayons.  Yes, I know this guy has lost half of his leg.  The others were already packaged and I didn't want to open one up just to get a picture.  I used a Lego mold  to make the crayons.  Caleb put small pieces of crayon in each m