Lost

Yesterday we lost Benjamin.  Sometimes kids do some crazy things.  Sometimes kids with down syndrome do some crazy things too.  It is just that kids with down syndrome do not always understand the danger in what they do.  Once I lost Bubs in Target.  Once we lost him and found him hiding in the playhouse.  Yesterday we lost him while he was playing "spy."  Apparently he makes a very good spy!  He sits and waits so quietly and patiently in a hiding spot that even when you are looking right at him you don't notice him.

Yesterday I heard the front door open and close.  I thought he had been in family room with the boys watching UT football (yes they still try to support the Vols).  I went to look, crocs were gone, and Bubs was not in the house.  I walked around the outside of the house calling his name.  He didn't come.  Brian came out to call for him.  Samuel and Gracie starting looking inside.  The neighbors were outside, they started calling for him.  After a while to no avail.  I took my phone and starting walking up and down the street.  After what seemed like an eternity my neighbor found him....squatting under the shrubs in the front yard...quiet as could be.  Just like the other two times...I couldn't find it in me to be angry.  I was just so filled with joy that we found him.  I just held him and hugged him...so thankful we had him.

Today the pastor's sermon was fitting...it was the parable of the lost sheep, the lost coins, and the two sons.  In all cases something was lost.  The sheep and the coin didn't really choose to be lost but the prodigal son did.  He left his home, searching for something better.  Every day the father watched and longed for his son to come home.  Today something struck me...I was just like Benjamin and the lost son once...Lost.  I was wandering around doing my own thing, watching and participating in  the world, hiding behind a life I thought I wanted.  Then God searched for me...he found me and brought him to himself.  The part that hit me was how much God loves me.  I think sometimes I love Bubs so much it hurts but God's love is that much deeper.  His joy over me is that much greater.  His faithfulness is that much stronger.  Think how much his heart breaks when we stray and think how happy he is when we come to Him.

Oh the deep, deep love of Jesus,
Vast unmeasured, boundless, free!
Rolling as a mighty ocean in its fullness over me!
Underneath me, all around me, is the current
Of Thy love
Leading onward, leading homeward to
Thy glorious rest above!

Oh the deep, deep love of Jesus,
Spread His praise from shore to shore!
How He loveth, ever loveth, changeth
never, nevermore!
How He watches o'er His loved ones,
died to call them all His own
how for them He intercedeth, watcheth
o'er them from the throne!

Oh the deep, deep love of Jesus,
'Tis a heav'n of heav'ns to me
And it lifts me up to glory, for it lifts me up to Thee!

Gracie Girl

My beautiful girl

So what did I say...she loves HOT PINK...

Hot pink again

Her pink BALLET party

One of her favorite presents...this sums her up pretty well here.

This post is well past due. I have so much to say here. I sent my last little to preschool on her own this week. She is doing a prekindergarten to get ready for really going off to school next year. She was pretty brave...perhaps braver than her mama. Fortunately yesterday was so busy I didn't have too much time to think about it all. Today I am just amazed at how big she is getting. I know it helps to have two older brothers to watch. She did tell me recently that no matter how big she gets she will always be my baby. Probably true. She will always be my baby...and I am glad she likes it that way. She is all girl and I think she will one day be a fashion designer. She has her own idea of how she wants to dress. Most times I do not intervene. She is pretty good at it. Other times it is just too cute to intervene. She loves to dance and sing. She is taking ballet and tap and she has been very happy that she can "hold" the bar like the big girls. She LOVES to have playdates. I think she enjoys this WAY more than the boys did at this age. She asks almost daily for a friend to come over. She loves all things HOT pink! She loves all things BARBIE! She loves to be a MOMMY to about ten animals and a new doll named Charlotte or Phoebe or whatever other name she chooses...she never has been good at remembering names. ;)

Big steps for eternal good

This week was big for Samuel and for our family. Samuel met with the pastor to affirm his desire to join the church. The pastor asked him several questions and among one of them was "Why should you get to enter Heaven??" Samuel boldly replied "I do not deserve to go...it is only for Jesus and his death that I can enter Heaven." Pastor Harry said,"Wow...you exactly got it." Once again this mom had tears in her eyes. Samuel has taken some big strides in his faith over the last few months. Three years ago he asked Jesus to forgive him and live in his heart but it has only been the last couple of months that he has started asking questions. He is starting to take in the world with a Christ centered view. He relates things in his life to spiritual matters. It's huge and it is nothing that Brian and I have done. We feel absolutely positive that God is working in his little life and we are thankful to witness it. So this Sunday Samuel will join the church. He will be taking communion for the first time in a few weeks and truly beginning to feel what it is like to be part of the body of Christ. Big stuff for a little kid! I cannot write this without mentioning one other thing. I am certain God is working in Bub's heart too. You see because of the communication barrier I cannot have him express things as eloquently as his brother. But one thing I do know is he is starting to realize that God is in control of our lives. Here is how I know. Just the other week we were talking about his speech therapist's son who has had a lot of health problems and he told me that he wanted to pray for her. So we started praying for her son. Then...yesterday Bub went with Samuel to his eye doctor appt. We were a little concerned that Samuel would need another surgery. Thankfully the doctor reassured us that his eyes were fine. When we got in the car he asked me to pray for Samuel's eyes. I said well we don't have to pray for them now...they are all well. Bubs was insistent that we had to pray and then it dawned on me he didn't want to pray that his eyes get better. He wanted to thank God that they were better! That kid even reminded his own mom that very moment that God is in control of our lives and anything good that happens to us is only from Him. So you see that is how I know God is working in his heart too! I think this might be my favorite posts. I know that not only are my kids growing and learning and becoming little "people," but I am counting my blessings that they are growing in Him everyday. Thank you God.

My little Champion

This past Wednesday night Samuel played his last season game for Gordon Athletics.  It was a "championship" game between his team and the only other undefeated team in the same division.  Technically with "coach pitch" ball you don't have a championship game but since these two teams were the only ones with no losses we had a game at our field.  Thankfully Gordon won again and now we are 10 and 0.  Not a bad season....It couldn't be a better bunch of boys.  They are sort of like a fraternity of sorts.  That would be most of Samuel's best friends on the team and they look out for one another.  They cheer for each other and support them no matter how they are playing.  It is pretty cute.

But even though he has had a great season and has improved quite a bit...he has always been a champion to me.  He is a wonderful brother.  I know I mentioned this before but he has an amazing amount of patience with his brother.  He always "has his back."  He lets him get away with things that no one else could do.  He worries about him and sticks up for him.  He has never really gotten mad at him (unless Benjamin decides he doesn't want to play with him....I think that hurts his feelings.)  So for most of his eight years I already knew he was a champion and I am pretty sure his big brother thinks that too.

Two different opinions

I just read two interesting articles.  

The first was about a journalist who chose to abort her baby when she found out "she" had down syndrome. In the article she talks about how she feels she did the baby a "favor" by aborting her and that she would not have been able to love her like she loves her two typical children.  

The second article was about a weightlifter who was headed to the Olympics.  He also was a keen swimmer before taking up weightlifting.  He is healthy and according to his brother, "turns a bad day into a good day." Oh and he also has Down Syndrome.  

I think I cannot really be angry with the first lady.  I guess it is arrogance or a wordly perspective but I think I just feel sorry for her.  I am not saying that my life is easy and we have a lot of issues but Benjamin was not mine from the moment we conceived him.  It was never about him or me...it was about a gift God gave me And although God entrusted him to me to teach and care for ...to discipline and to love...He was never mine. I guess I feel sorry for the first lady...she has missed that point entirely.  I think if you miss that then you would NEVER want to have a child with a disability.  You would NEVER want to keep potty training until he is eight or chase him down in a store when he is ten.  You would NEVER want to have to physically restrain him when he is shaking from his fear of a thunderstorm or to stop the car to find a bug that is flying around and terrifying him. But sadly because she missed the gift part she has missed the gifts.  The kisses (even when he is ten!), the smiles and laughs at complete strangers, the interactions between my typical children and Benjamin, the lessons he is teaching the children around him, the unconditional love, the innocence, the compassion, the joy in the little triumphs and the big ones too.  You see she doesn't know she missed all that and that is why I am sad not angry.  

I think I have been thinking lately about how many children with down syndrome and other handicaps are aborted.  I used to be filled with anger about it...I think now I feel sad.  Of course I feel sad for the baby who died but although the baby had no choice I feel confident those babies rest in the arms of a loving Savior.  I think I feel more sadness for those who made that choice.  That they truly miss the fact that God gave them a wonderful gift.  That God entrusted them with something very very precious and they missed it all...I can only pray that one day they will want to understand more about Him.  

FEEDING DAY

Today was Bub's feeding therapy appointment.  For those who do not know what that is I can explain.  Feeding therapy helps children who have physical, emotional, and textural adversions to food.  It also helps children who have feeding tubes or G tubes.  They teach children how to swallow without gagging and choking.  They help with children like Bubs who are so picky it interferes with their daily life.

So...today was his evaluation and here is the good news.  He is gaining weight and otherwise healthy.  He can feed himself.  He does gag and choke at times but it isn't life threatening.

Here is the not so good news.  His muscle tone in his mouth is weaker than we thought.  It is causing him to grow tired when eating and is the reason for the huge mess he makes when he eats.  Good news...they gave me exercises to help build strength.

Here is the not very good news.  His sensory issues are coming back.  The lack of OT for a sensory diet is causing problems...in eating and in his daily life.  He "stems" a lot more now than a few years ago.  He has become adverse to walking on any textures besides carpet or wood floor (without his shoes).  We are headed back for an OT eval and will have to begin OT sensory therapy as soon as we can get in.

Here is the bad news.  There is a four to six month wait for the feeding clinic therapists.  OUCH!  Because of his anxiety surrounding eating they recommend  that I not do any therapy now.  They feel we have tried it all already.  Once we start...it will be boot camp for eating!  Sounds like fun huh???

So that was the day in a nutshell.  If you ever need to do a feeding eval.  make sure to carve about 2-3 hours out for it.  Thankfully Bubs was a trooper.

I think it is so amazing sometimes when I am going through days like today.  My first reaction to all this "junk" is to cry and really ask "why me?" You sort of feel like you want to throw in the towel wondering if it really necessary to devote this much of my life to all these appts.

 Then I step back and look at that kid.  Man...I love him.  Having therapists to help "explain him"  helps me to get inside his little head even more.  It helps to stretch my heart a little bit more.  It helps me to be thankful for a lot about him. It reminds me that God gave him to ME and it is my job to rally for him even when I don't feel like dealing with the "junk."  and it reminds me even more that none of us are perfect.  Had this verse running through my head this afternoon.   "God's grace is sufficient for us and his strength IS made perfect in my (and Bub's) weakness."

Praise God for all of the "junk."

Dad's Day

So this weekend was Father's Day and like most dads my kids celebrated in usual fashion with their daddy.  But I feel I must take a minute to talk about their daddy.  He is by far the most involved Dad I know.  He comes home from a busy day at work and takes time to play ball with Samuel, princesses with Gracie and wrestle Bub.  I know how much my kids love it because they ask me mulitple times, "When is Daddy coming home??"  My best memory of when the boys were younger was when the boys would scream and run for the door the minute they heard the garage door open.

Their Daddy loves them unconditionally.  He does a really good job of talking with them about "big" things.  He has done a really good job at training them ( especially Samuel right now) spiritually.  

He works hard for them.  He goes to work and works hard at what he does so that I can stay home with them every day.  

He loves me in front of them.  I think that is an important one for Gracie...considering one day I want her to find a man like her daddy.

He gets them.  Some Dads are not really involved enough to do this.  He knows about each of them and what makes them special.  

Kids love their daddy.  He is a big clown, coach, and jungle gym for kids.  I love that about him.

Both Brian and I have awesome examples of good Dads.  My Dad and I had a chance to get close when my mom died.  I know he would go to bat for me at any time.  He is caring and always there when I need him.  Brian's dad is also involved in our lives.  He plays with the kids when he visits and still takes time to listen to us when we have "big" things happen in our lives.

So this Father's Day I must thank God for my father, my father in law, Brian and of course my Heavenly Father who loves me unconditionally and gives us grace and ability to love each other.