Here's to Reality

Did you ever leave your 4 year old in a room alone for a minute or two and think... oh, they'll be fine?  I did it with my typical children all the time and guess what?   They were fine.  I had somehow convinced myself that we were doing just fine.  In spite of two emergency medical flights in 4 months and all of the escalating "issues" we've been dealing with.  I let myself slip into this nice little zone thinking "we're just fine" and then I walked into my living room last night after only being around the corner in the very open kitchen for less than 2 minutes.  I walked in to my living room to find my child turning purple and choking.  She couldn't (can't) get the "junk" out of her chest...In a moment of panic and hysteria I managed to get her up and flipped over and started hitting her back hoping it would help...I yelled (probably more like hysterically screamed) for a burp blanket (she vomits so much we use receiving blankets instead of burp cloths) and I think I yelled she's purple.  The moment seemed to last forever and my husband had to help but we succeeded and the Peanugga snuggled right into my lap completely exhausted while daddy did her breathing treatments and I sobbed my heart out while clinging to her.  Barely four hours later it happened again....and then again this morning.   This is our new reality....and once again the doctors have no idea what's causing it.  

When our journey started all I kept telling myself is it will get easier as she gets older.  I convinced myself it would get better.  In many ways it is great... she's thriving and growing and learning new skills every single day and on the flip side of that always seems to come another I don't know and a new diagnosis to add to our never ending list.  This time it was the fancy term of Neuromuscular Respiratory Weakness... it came along with an order to our DME for suction equipment so incidents like last night and this morning are a little easier to deal with.  Now we are in the middle of the waiting game of insurance approvals and DME shipments and then we have to actually learn how to use the equipment.  In the meantime I pray to a God that I'm not sure I even believe in to not take my child from me... again.

I never thought I would be willing or need to make a deal with the devil to keep my child here but I've done it.  I've done it multiple times now.  Every time another one of our "friends" has to say goodbye to their child my heart breaks and my anxiety level rises another inch.  I never thought when this journey started that PTSD would apply to me, boy was I wrong.  

I never thought that at 4.5 years old I would be contemplating moving her bed back into our room because I'm terrified to close my eyes at night.  I do have a video monitor but now I'm seriously questioning if her room would make a nice dressing room/walk in closet.  

We always try so hard to stay positive...we deal with the bad stuff in the moment or with the new diagnosis and move on.  We adjust our routines and live in the moment.  We try not to think about yesterday and we don't plan for the future because every moment we have matters.  Every single moment in our life with Madilyn is a gift and not one that came with a guarantee either.  If we are planning for a future or dwelling on yesterday we are wasting precious time that matters....

When I started this blog it was to raise awareness for what (multiple) rare disease looks like.  It was therapy for my soul.  It still is but I find that I will write a post and never hit the post button because I don't want to hear the "I'm so sorry".  There is nothing in our life no matter what is going on at the moment for anyone to be/feel sorry for.  I (we) get the gift of loving a beautiful little girl that has taught me more about life and love than I ever thought possible.  She will continue to do that for however long the powers that be decide we get to keep her.  Her little giggle is contagious...we waste more tinfoil and paper to hear it than I ever thought possible.  She gives me the best excuse ever not to do the dishes or sweep the floor when she crawls over, tugs on my pants and says "momma up" with her arms in the air.  I've learned that whatever it is can wait.

  I am not sorry and you shouldn't be either.  I am hopeful every single day that we have a very long and love filled road ahead of us and I can guarantee it will be very full of little pink shoes.