Walking Together

Video

Jonathan loves Leo. He is always wanting to help Leo. I also think Jonathan is a little jealous of Leo's walker. He loves to fly through the house using Jonathan's walker. 

 Leo is doing really well using his walker. He is getting stronger and stronger each day. We are looking forward to the day when he will walk on his own. He is also understanding more and more. Tonight during Bible time Jeremy said if you have a question raise your hand- as he said "raise your hand" Leo's hand went right up. He had everyone laughing. Progress, slow and steady progress is being made.

The Club

There is a club. When some find out they are going to be a part of it they simply choose not to be.  When others find out they are going to be a part of it they make the brave choice to embrace what they consider to be their "lot" in life.  Others while embracing their membership, grieve for the dreams that may die.  Many accept membership to this club as God's will for their family.  Some like Jeremy and I voluntarily choose to join this club.  I have met so many other families that are volunteering to join this club and they are some of my heroes as they have "joined" multiply times. 

Thursday I was quite sure I didn't want to be part of this club anymore, but by Saturday I was so thankful I was.  This club is the club of kiddos who have special needs.

On Thursday, Leo and I headed off for Children's Hospital to take part in their cleft palate clinic.  It was our first time going.   We were told to be there by 9:00 and that we would probably not be done till 4:00.  In hind sight, I probably should have cancelled.  I was tired.  We hadn't had power since Monday night.  Thankfully friends loaned us a generator, but that still only provided limited electricity and I hadn't been sleeping well.  The short version of our day was that by 2:00 we had seen at least 4 doctor's none of whom added much to Leo's life.  They all basically said - "your doing great, keep it up".  At 2:00 (still not having had lunch) I asked how many more do we need to see.  They then proceeded to list 4 more- one of which was the dentist (who I really wanted to see) and a psychologist.  Telling me my child needs to see a psychologist basically put me over the edge.  He is happy, he is non-verbal, he is two.  I might have needed to see the psychologist after my day, but Leo not so much.  I started crying. (Why I don't know.I was done, oh so done).  The nurse not sure what to do with me immediately got us in to see the dentist and then gave us our walking papers and told us to go home.

There were probably 20 other families there, but my guess would be that for most, certainly not all, this was their yearly trip to Children's to have things checked in one day.  The thing is some months, Children's is my second home.  We see so many specialists there that to spend a day seeing more specialists who really aren't going to add anything to Leo's life is a waste of time in my opinion.  Apparently, the cleft clinic is a yearly event.  We shall see what next year brings, maybe by then Leo will be talking and able to really give the psychologist an ear full.  At the end of the day, I decided I really didn't want to be part of the cleft palate club anymore.

Thank God for Saturday.

On Saturday, I headed out to Davisville Church where I participated in Caregiver Day.  The leadership at Davisville has a heart for families that care for special needs kids and they provide such amazing care for those families.  Caregivers day started at 9:00 and finished by 4:00, but I left looking forward to next years "club meeting".  You would never know by looking at these women that they were part of the special needs club.  Except, for the fact that we all looked tired.  These were incredible women, who have chosen to see what a blessing their children are.  They love their children and can not imagine their lives without them.  They fight for their children.  They battle bureaucracy daily for their children.  They want what is best for their their child.  They love fiercely and deeply.  They are in it for the long haul.  I had the privilege to spend a day with a group of amazing women.  We were all treated to breakfast and a hot lunch on china dishes.  They cleaned our cars while we were inside being pampered.  We got haircuts, manicures, foot massages, hand massages, body massages, chocolate, eye brows plucked.  We listened to each others stories and were an encouragement to each other.  This is a group I want to be a part of. I left feeling relaxed and rejuvenated. 

The honest truth, some days being part of the club is hard (ok a lot of the days can be hard).  But the majority of the days it is so rewarding.  I am rewarded daily in smiles, giggles, and hugs.  I am so thankful that God chose us to be parents to a special little boy. 

Living Life or Writing Life

Leo working with his vision therapist.

There is always a choice to be made between living life or spending time writing about life.  Life has just been so busy lately that writing has taken a back seat to living. 

Do you mind, mom, I am trying to read my book! 

I am trying on a daily basis to have Leo use his walker.  This doesn't sound like it should be a big time, consuming thing but it really can be.  First you have to get his sure steps and shoes on, then find the walker, then clear a space to walk or give up on picking up a million Legos and just go outside to walk.  Leo is doing a fantastic job when we use the walker.  

Today, I was feeling especially brave so on our way home from Amanda's violin lesson we stopped at CVS and the Dollar Store.  Leo used his walker in both stores including the walk from the parking lot to the store (traffic was minimal).  He did great although he did feel the need to stop and greet every lady that went "ahh".  He also attempted to stop and shoplift several times, but I did make sure all items were either paid for or returned.   Jeremy just so happened to call while we were in the Dollar Store to let me know he needed to work late, so I instructed Jordan to pick up an extra pack of peanut butter cups to help get me through.  

Life is also just full with homeschooling 5 kids.  The boys like to start early so by 7:30 I am sure to be teaching someone math or spelling.  Leo actually enjoys schooling time as we walks around the table holding on and pulling papers, books and pencils off.  He thinks it is great fun to grab school papers and tear them up.  

This week we also needed to make time for Cupcake Wars as Amanda challenged Tyler and Jordan to a cupcake war.  She supervised the boys baking and then proceeded to bake her own cupcakes.  I totally forgot to get a picture of the finished product but I have been told a rematch has been scheduled for next week. 

 Jordan the Baker

 The Cupcake Queen!

The Taste Testers

Yesterday, cupcake wars just happened to be occurring as one of the therapists was here.  Thankfully she also has a lot of kids so was not bothered by the commotion in the kitchen.  In thinking out loud to her, I said- 10 years ago there is no way I would have let the kids make two different set of cupcakes in my kitchen without me supervising.  I must be getting old.  I think the reality is that I am realizing what is really important.  The sibling bonding that occurred between Amanda and her brothers was totally worth the cost of some chocolate icing on my cupboards.  To her credit, Amanda did do a great job cleaning everything up.  

We just so happened to have a surprise special guest with us for dinner last night.  I am hoping to find time to write about that visit- hopefully tomorrow.