Monday, June 3, 2013

The Gift of a Friend

Today I finally got a phone call from my state's early intervention program. We finished the first part of the evaluation last Wednesday, and hadn't heard back from them after their meeting on Thursday like we thought we would. I had been left feeling confused and frustrated. The evaluator had seemed concerned at some points on the interview but for the most part, it was hard to read anything that was going in her head from her expressions and I was left wondering if I was taking crazy pills again and that I was being overly concerned for my Little Diva...

Well, the  results were less than stellar...overall Faith barely eeked in the the 3rd percentile- they prefer kids to have an overall score of 15th percentile to 85th percentile...her biggest trouble areas being socio- emotional development (not even scoring in the 1st percentile) and communication (again, not even in the 1st percentile.) They are coming back on Friday to do one more round of evaluations to check her sensory perception and adaptation skills and then we will know more.

Overall, dealing with getting the help we need for Faith has been on both ends of the spectrum to the very best to the very start to doubt yourself and your intuition as family members and friends seem to say over and over again that you're just being overly concerned and kids will do things on their own time. While I have been grateful for their opinions and experiences, I knew that what I was dealing with was vastly different than a child who didn't start using words beyong mamma, dadda, yes, and no until they were well after their second birthday...I have been dealing with a child who desperately wants to communicate with me and just doesn't understand how to do it...I've never heard her call me "mamma", or her daddy "dadda", she doesn't say yes, or no, she either tries desperately to get herself what she needs and then has a melt down because she isn't tall enough or strong enough, or has a meltdown because she is trying to signal what she needs and I don't understand right away...its also been hard to watch Phillie learn how to do these things (say  mamma, dadda, yes, no, I'm done...etc.) and know that it truly was that Faith just didn't "get it".

However, what can be said is that this evaluation, and the evaluations we will have in the future as we reach for a possible diagnosis of what is causing her delays, is that it doesn't change anything. Our Little Diva is still the same sweet, lovable, curious, stinker little princess that you will ever come across. She still loves me fiercely in spite of not being able to call me "mom", and she still wants desperately to do things that "big kids" do.  What will change? What will change is me and my husband...through this experience I am looking forward to becoming exactly the parent that Faith needs in order to be as successful as she can be no matter what...

Who knows, 6 months down the road may find us in a much better place with Faith finally able to communicate her needs verbally, and it may not...but no matter what down the road holds- I love her and any medical diagnoses and labels that she may receive will not change the fact that she is a child of God, and, while she is here on earth, I am lucky to have the chance to  be her caretaker and advocate against a world that seems to be getting crueler and harder by the minute.

This morning, after I shared the test results with him, Jeff made a statement that has been in the back of my mind and a point that brings me peace...he said, "Well, we can do everything we can for her, but I think a lot of the progress she makes is going to be because of Phillie."

My sweet Phillie doll, my Divine Cupcake...she wants so badly to be a part of her big sister's world. She has become a daredevil in the past few weeks, all because she wants to be where Faith is. She wants to smile at her, she wants Faith to recognize that she is there. Last Sunday, her attempts landed her in the ER with a dislocated elbow- that's right, our sweet little 9 month old chunk of sunshine is willing to risk bodily injury to do what Faith is doing and to be close to her...
(P.S. Notice Faith's new "do"...she decided that  marshmallow would be the perfect hair accessory. In spite of my best efforts at using EVERYTHING I could to get it out, I ended up having to cut it out, leaving me no choice other than cutting 3 inches of hair off and giving her a cute little bob...Jeff says she looks like a mini Kindergartener, I somewhat agree. I was happy that she sat still so I could cut it myself. Its not a perfect haircut, but its even and looks halfway decent, so I can't complain. We just didn't have money to go and pay for someone to do it.)

From the minute I found out that Phillie was unexpectedly on her way to join our family, I looked down at Faith's sweet little 2 month old face and wondered how I was going to be able to do it. Surely, this was a mistake...but that thought was fleeting...God does not make mistakes. I came to understand as I dealt with the hardship of being heavily pregnant and having to pick up and carry around another baby that there was a bond, a special connection that my girls had. That they would need one another more than I would ever know.

Over the last few months, as I've been reaching out to try to get Faith the help she needs, I have been able to witness that bond- even if it has seemed one sided and that Phillie was the only one interested in forging it here in this earthly life...Phillie's close age to her sister and her fierce desire to be her best friend and companion are truly a gift from God. During the last few days, Phillie has had some successful moments where she has been able to draw Faith out of her own little world and into a world with her.  She will babble or say a word and Faith will smile and say it back or try to babble back the sounds Phillie is making. Phillie will smile and get excited, making her noises like a monster and Faith will giggle...while these moments are fleeting and short, I treasure them because I know that Phillie is going to be the key to reaching Faith and communicating with her.

I know that seems like an awfully large responsibility to place on a 9 month old, but as surely as I believe that Faith accepted this trial of being delayed in certain areas of development, I fully believe that Phillie asked Heavenly Father if she could be here to help her and support her through her struggles, and God, being a good father, accepted that request. There is no doubt in my mind that they were best friends in their pre-mortal existence and they did all they could to make sure they would be able to continue that bond and help each other navigate through a tough world.

What a blessing it is to have the gift of a friend from day 1 and an innate desire to serve them and associate with them.

One of Faith's favorite movies is Tinkerbell and the Lost Treasure. Throughout the movie, as Tinkerbell journeys to find the lost Mirror of Encanta, she realizes her shortcomings and what true friendship really is- that its more about what you can do for one another as opposed to what people can do for you...the theme song to the movie describes my girls and their relationship so perfectly.

"The world comes to life, and everything's right 
From beginning to end 
When you have a friend by your side
That helps you to find
The beauty you are when you open your heart
And believe in
The gift of a friend."

How blessed am I to be able to witness something so special? I love my girls and I am eager to move forward, start the next chapter and become a better mom for them.

Hugs and loves until next time darlings.


Andy's Mom said...

Interesting, interesting, interesting. So, I've been thinking about Jeff's statement. A lot. JJ made a similar statement about our kids. JJ said, "Maybe the reason it took us so long to get Olivia is because there HAD to be a huge age gap between Andy and Olivia." He went on to mention that if it hadn't been for so much of Andy's OVER-nurturing, Olivia could have been far more delayed than SHE ended up being. Plus, because of how Andy was, the delays were far more noticeable with Olivia.

Which brings me back to you guys. I know you took a lot of shock and statements about your girls being so close together when you announced you were pregnant with Phillie. Jeff is right though, and perhaps you noticing the delays wouldn't have happened (so quickly) without another baby right after Faith, and I'm willing to bet money Phillie will be a great source of help for Faith for years to come!!!

Keep your head up!! :)

Anonymous said...

Hi, it's Cherhys Hubbard.I don't know if you remember who i am or not. I was in the same ward as you at ISU. You probably knew me as Cherhys Gleed back then. My daughter is 3 1/2 and has been struggling with the same issues since she was a year old. We had her in the infant toddler program until she turned 3 and is now in a developmental preschool. Hopefully you don't think I am sticking my nose in where it doesn't belong. I just know how frustrating this can be as a mother, and was going to offer to be a listening ear if you needed one. let me know

Sister Brittster said...

Thank you Cherhys for your sweet offer of a listening ear. I will definitely remember to contact you when we have a clearer idea of what is going on. You are so sweet.

The White House said...

I have no doubt your husband is right. It took me years to realize that our 2nd child was a gift to our oldest. We started having the boys share a room to help with the 2nd being able to sleep and after that we noticed more progress in the social area that as a parent you just can't seem to teach. I didn't plan for the 2nd to come when he did (I had plans to graduate). Good Luck on your adventures with Faith.