Ride the Roller Coaster

This week has been a crazy roller coaster of emotions for me and it sure does take a toll on me personally.  Let me mention, I have never been a huge fan of roller coasters!!  The excitement of it and the adrenaline is great but the unknown and that awful feeling that comes and goes in your stomach is unwanted.

Let me see the best way I can sum it up, we have been plugging along taking each appointment as it comes doing the best we can with what we have.  All of us.

Monday started with a call from the Social Worker about Thomas' coping mechanisms especially when he deals with anger and frustration.  I blogged about that earlier this week.  Its hard to hear about your child's mental state and recapping the trauma from his eyes that he has had since birth.  Even though he is so young and little, he remembers things in his way and has his own view of things.

We had the ENT on Tuesday, which was so trying on me since I hate to see Thomas scream and fight with the audiologists when we are trying to test something as important as his ears.  It is also hard on a mom to hear that yes due to his syndrome these tubes will need to be replaced by the end of the year.  I didn't even ask, what about next year or the year after.

That evening while my mind is still reeling from all of that, when I find out that I have family members who are making judgement calls.  I will not go into detail here, but I felt a lot of pain and hurt.  Still do.  My first instinct is to defend myself, but I will not do it.  You expect your family to know you and it hurts when they don't know your heart.  I will continue to pray on this matter and for peace in my heart. 

Do not judge, or you too will be judged. For in the same manner you judge others, you will be judged, and with the measure you use, it will be measured to you (Matthew 7:1-2)  

We moved on to speech therapy on Thursday, which was Fabulous!!  Not only did Thomas start to catch up with some of his vocabulary but he all of a sudden decided to start using sentences.  Two word sentences!!  He did so great with our ST.  I was surprised especially since he was a bit resistant to most of the techniques that he had suggested two weeks ago especially with eating certain foods with harder, chewier more crunchier textures.  But we have him doing many of the other activities and will implement other techniques in the next couple of weeks.  I joked that we were going to get kicked out of the program is Thomas keeps doing so well, he winked and said once you are in we don't kick you out!! Whew!!  I have more than one objective using the State program for this service because they will help us transition into the school system next year. This will be easier to do through them than an outside parent trying to get in.

Wednesday afternoon, we had our annual Easter Egg Hunt at the church and even added a new aspect of the Jerusalem market.  My station was a prayer request cross.  I made the cross myself after my husband got me the materials.  I was excited but as it started I saw the lines form at all the other stations and mine was very sparse.  I didn't have a cool rip cross, palm craft or beaded bracelet or the fabulous tattoos.  But soon the kids came and so did their sweet pure prayer request.  It was beautiful!!

The cross with children's prayer request.

  

The cross got completely covered and then the children began to place their prayers on the back!! It was a glorious moment!!  Once we were done there is was off to the Easter Egg hunt.  My dear friends not only helped me chase my boys around and keep tabs on them, but they also took my camera and captured these special moments while I was able to enjoy the moment.  I try to so hard to enjoy the moment these days, but its hard.  Just spending time with the boys in that setting watching their smiles was so uplifting for my soul just when I needed it most.

My baby running across the lawn to his 'Mama'

Thomas getting his eggs!

Thursday morning while working with the babies at the church a dear friend brought me a large Easter basket that he stated was from his wife to the boys.  I was overwhelmed and fought to fight back the tears as it touched my heart.  When I got it home and was able to look through it there were tons of books, some bubbles and candy for the boys.  I gently pulled the card out of the basket and opened it.  Out fell several gift cards but it was the words that really touched me.  The love in her words supporting us, encouraging us, praying for us daily to continue to do all that we do for Thomas and our family in the ways of the Lord.  She even gave me permission to scream!  It was wonderful.  Gifts like these are amazing to me because they are pure love.  It is teaching me that others love us so much and think of us often and showing me ways that I can show others how to love them.

Our Easter basket from our Church Family! Love them!

On Thursday afternoon I took the boys for haircuts so that they would look good for Easter.  Thomas was so stressed out and screamed most of the time.  It just hurts me to see him have so much anxiety whenever he is required to sit and have people mess with him for any reason.  Its more proof that he has been through so much trauma in his little life and has a hard time dealing with anything outside of his norm.  I wish there was someway I could help him with things like this, but I am afraid at his age it is just going to take time and eventually he will learn how to deal with different people and begin to differentiate between doctors and others.

Friday finished the week off with an Easter party at the preschool for our middle son then packing to head out of town.  The boys are going to stay with their Meemie for the week and were so excited!! It was perfect to end this week at my moms.  I can sit and relax better here than any other place.  There aren't a millions things that need to be done when I am here.  Plus my mom is awesome in helping with the boys and allowing me to chill a bit.  It will be strange to leave my older boys here for the week but I am also looking forward to spending the week with Thomas.  Plus the memories they will make with her will be timeless!! I always enjoyed the one week in the summer that I would spend with my cousins and Granny at Bluffton, SC. 

Next week we have Occupational therapy and another appointment on Thursday.  Of course, the biggy in the middle is we are heading to the Shriner hospital for the first time.  We will drive up there on Tuesday and start at 8am on Wednesday.  My anxiety is quite large over this, because I know Thomas will have fear and anxiety that we will have a hard time distinguishing.  He will see doctors and nurses and have more x-rays and tests.  In the end, it brings us hope, but in the moment its rough.

God was with me last week and kept making himself known to me through his actions and through others.   I know for a fact God will be with me this coming week.  I don't know how people do it without him.  The Holy Spirit fills me and works within me constantly while God's grace and love showers me daily.  I get down, mad, upset, and frustrated. . . but I am always working to diligently give it all to our Lord.  I cannot do this on my own.

Please God always guide my path.

Your word is a lamp to my feet and a light to my path. Psalm 119:105

I allow hope, not fear, to direct my steps.

And your ears shall hear a word behind you, saying, 'This is the way, walk in it,' when you turn to the right or when you turn to the left. Isaiah 30:21

My prayer is that I will eventually embrace the roller coaster and will let my hands fly up in the air!