my go-to girl

Before I had Scout I experienced what most parents probably do...how will I love this child as much as my first?  I was especially hesitant about having a second on the worry that I wouldn't have enough time to care for my special bird and I also wanted Lucia to know that she was perfect in every way, perfect enough for us to not need another one to fulfill anything.   After some thought, Jason and I decided to have another because it would be good for our whole family, including and probably especially Lucia-so far that seems so true!

I remember my mother in law, Linda, telling me she went through the same thing after her first Jason. Although he is not special needs, well not text book, (just joking honey) she was pregnant and a bit scared and she told me her thoughts, something like this "how can i possibly love this next child as much as Jason.  But as soon as they're born your heart just fills up and there is just more love.  You may not think there is room but your heart grows and you have that much more to give."  Sure enough she was right.  My heart burst and grew the second Scout came into this world.  No doubt my love has grown daily for these little ladies, both of them.

Linda has continued to offer me some great parenting advice and be a wonderful Noni to both my girls.  She and her husband Mario were the first to care for and watch Lucia overnight when she was just a few months old.  Linda ran her g tube pump, gave her all her meds, oxygen, and tons of love, all without a hitch.

Due to a bad hip and injury she was unable to watch the girls too much the last couple years, but after having her hip replaced and recovering,  the last couple months she has been amazing.  She offers to watch the girls and often insists saying, "you need a break" even when I don't ask and she always gives a full report with lots and lots and lots of details.  How much and what they ate, how much and what they had in their diaper, how their moods were, and more.  A full report.  She also tends to always capture happy beautiful pictures of the girls too!

a prize picture linda took last sunday night

This last week the girls and I spent over a week in Vail sharing beautiful accommodations with Linda.  She is very generous and I thank her so much for including me and my girls as much as she does and with bells on.  On the second night in Vail Lucia had an incident.  Linda, Lu and I were sitting on the bed talking and all the sudden Lu started jerking, like she was getting zapped with a stun gun. Although I had seen some questionable episodes in the past, this one was no doubt a seizure.  It broke my heart to see Lucia lose control of her muscles, she was crying and so confused by it all, as were we.  It wasn't too bad considering how there are so many longer and more severe seizures... It lasted about 3 minutes, about 15 jerks, crying from Lu, an upset mommy and a Noni who was keeping it together enough to stay calm and video most of it for Lu's doctor.  She had one other much smaller one on Friday and nothing since.  Praying to God that our girl does not enter the world of seizures regularly.  As they affect over 80 percent of kids with PKS, it is highly likely that it will come back, but I hope and pray they won't.  They truly are heartbreaking and can be very difficult to treat and diagnosis...We have an EEG next week and will know more then.  I am so glad that I wasn't alone with Lu and Linda was so strong, despite worrying about what was going on probably as much as me.

In less than 2 weeks Lucia will be going to school! -  so I scheduled a bunch of appointments while her schedule is free.  Linda is watching Scout two times next week so I can take Lu.  I told Jason that his mom was coming over to help and how great she's been-  I said "she's my go-to girl when I need help".  How great is that?  Whether my parents were here full time or not she is always up for helping and LOVES every bit of it.  You see,  I've met other parents w special kids like Lu whose family members have not accepted their child.  They suddenly ignore the family or make weird and awful comments.  There is nothing more hurtful I can think of than your own family not loving your own child! Makes me sick to my stomach. What is wrong with them to not see the angelic gift in front of them? Their loss.  Our family is blessed. We are blessed to have each other and so blessed to have Lu as ours!  Our girls have amazing grandparents all around!   Linda, as you clearly love all your little girls ( 4 grand daughters) I have always loved the way you are with Lu.  The thought you put into gifts for her, the offer to hold her every time she wants a bottle, and the disappointment, when she has just eaten and you didn't get to hold her and feed her the bottle.  And now you get to watch your newest grand daughter who happens to look highly like your son- you are so good with her too!  I loved how you shared this with me after a few days with Scout last week, with tears in your eyes.   "A couple times today I noticed Scout making such a similar face that reminded me so much of Jason when he was her age.  The way he would look at me like I was the most important person in the world.  And so soon that look is gone.."   I keep remembering that Linda, and have tried to treasure these moments with my girls more than ever.  I suppose Scout won't always think I'm the coolest, best, funniest person on the planet forever..  And then I thought of our bird.  She WILL always feel that way! We will all care for her like our baby, forever.  She will always, I think, believe we are the best and I know that look she gives when she is able to look into  our eyes, or her soft skin when she cuddles with us, I know that look and touch will always melt our hearts.  I love my girls more each day.  I know Linda loves our girls, her granddaughters more each day too, especially when she gets to spend time with them.  Thank you for all you are to us and especially our girls.  Thank you for loving to care for them, thank you for helping and being my go-to girl even when something medically goes wrong.  We love you so much Noni and we have so many great memories to come!