Friday, November 17, 2017

A new form of guilt....

Within the next 2 weeks or so our little bear is going to become a big sister.  I am eager and excited about this new addition to our family, yet I have not even packed my bag.  (Full disclosure, I packed for Sonzee while in labor and running out the door).  I really am looking forward to everything that comes with having a newborn baby, but despite the typical massive amount of pregnancy hormones circulating within my body,  there is a cloud of guilt and sadness hanging over me.  I do not want to assume everyone who follows Sonya's Story understands the needs of a child like our dear Sonzee bear.  I do not want to assume everyone knows how much care she requires.  I try not to mention the sleepless nights encountered due to her constant alarming pulse oximeter letting me know her heartrate has skyrocketted (or on some occasions her oxygen has plumetted) and she is having another seizure.  She is dependent on every level.  She is unable to be left alone, she has to be buckled into swings and bouncers at all times.  She is unable to be placed on the ground in a seated position "for just one minute" so something can be grabbed.  She is unable to feed herself, and in fact in her case, her food bypasses her stomach and goes directly into her intestines so she doesn't eat in the typical fashion.  Her tube feedings are prepared in advanced and placed in the fridge and refilled periodically throughout the day and the night due to a continuous 20 hour a day feed.   She requires medications, patching, and various position changes throughout the day on top of the daily needs of a child.  Her needs are that of a newborn baby, in all ways, literally.   

It was decided shortly after we found out I was pregnant that we would need extra help around baby's arrival.  When you have a Sonzee bear, you can't rely on family to take care of her needs, it wouldn't be fair with everything they have going on.  Thankfully here in Phoenix we have a place I have mentioned previously called, The Ryan House, where you can send your child if he/she is diagnosed with a "life limiting" journey.  They give you 28 days a year where you can send your child and he/she can be surrounded by nurses and volunteers in a loving/caring environment who will give your child the 24 hour care required to provide some respite to families.  Since they fill up quickly, back in May I called up and booked Sonzee for the last week of November, a weekend at home, and then the first week of December.  We had our phone call with the head nurse Wednesday, we updated her medication list, and we are now down to her first check-in in just 10 days, and my heart is breaking.

I realize my limitations of being able to care for 3 typical older children, a Sonzee, and a newborn baby simultaneously in the first couple of weeks.  I know deep down this is the best place for her to ensure she receives the care she deserves and requires and all of our other children do as well.  We are able to take her in and out of the Ryan House as long as she returns to sleep.  Her nurses are able to be with her on their regular schedules.  She is literally in the building next to the hospital I will be delivering the baby at.  There is really nothing negative about the setup, except the amount of guilt I feel over having to place one of my children outside of my house to welcome a new one.  I am not the only person to have a special needs child, other children, and be welcoming a new baby...I feel like I should be able to handle it all.

For 2 years and 8 months my older children have made sacrifices because of their sister.  They have had to endure experiences no children should ever have to, and they have done it with amazing stride.  They had no choice, none of us had any choice when it came to Sonzee's diagnosis, and I have not stopped feeling an immence amount of guilt because of it all.  Yet as the days get closer to welcoming this new little person, I am scared of how it will all play out.  This is different because Sam and I made a choice to have another child despite having a Sonzee and 3 other children and with it comes a whole new form of guilt.

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