A full and blessed January

January has been quite the month for the Heath family. Just for fun we will work our way through backwards.

 

Jacob is now 7 months and rolling both ways and scooting and wiggling his way all over the place. He is also drooling pools and chewing on anything he can get in his mouth on. He has tried and loved almost all of the 9 foods he has tried. He watches whenever we eat and he

doesn’t understand when we don’t share. Cocoa (our dog) is also enjoying having another food dropper in our house. Jacob continues to be a joy and we are so thankful he is a part of our

family.

Our family has joined the pickleball craze. We received a pickleball set for Christmas. Joe and I began learning a few weeks ago and are enjoying a fun way to be active together. Recently, there was a two-hour late start for Peter and we had the court booked for 8:30 to 9:30am so Grandma and Grandpa hung out with Jacob as planned and Peter came with us to play pickleball a
nd loved it.

 

Peter continues to have his good days and not so good days. Most days are mostly good and for that we are grateful. He got his 2nd quarter report card and scores from recent testing.    Despite his challenges he has 3rd grade level reading comprehension and is on grade level for math. He is working hard at learning Braille.  He is not reading in Braille yet but he is working towards it.  He has learned almost all of his letters to both identify and type. He is now working on learning contracted Braille. He can type pretty fast on his Perkins Brailler. We are very proud of him and how hard he works. Peter had his 6 month appointment with his Batten’s team and he is doing well. The disease doesn’t seem to be progressing much right now which is great. Other than a cure or treatment, no progression is the best we can hope for.

 

The first week in January our family enjoyed a once in lifetime trip to Disney and stayed at Give Kids the World Village. It was a week filled with amazing memories, lots of laughter, joy and walking oh so much walking. Joe’s sister Joelle also spent the week with us. Jacob got to spend special time with Grandma and Grandpa H. Peter loves roller coasters that are 3’s, for  reference Thunder Mountain is a 3. He also loved the Slinky Dog ride at Hollywood Studios, and the Test Track ride at Epcot. Give Kids the World Village is an experience and a blessing all in itself. There was an ice cream pallor open all day. I think there was only one day we didn’t get ice cream. There was a wishing well, with the coins provided, that Peter loved. It made different noises when you threw the coins in (including burping). He got to go horseback riding and go trick or treating. There was a golf cart that delivered cookies and you could call for a pizza anytime. Peter also loved meeting Mickey Mouse. The Village had a special time that wish kids could meet and interact with Mickey, without all the crowds and lines that happen at Disney. While our time there was so special Joe and I both agree that we prefer Loudonville traffic over Orlando traffic.

 

Our wish trip was an amazing week that we focused on Peter and doing all we could to make it

a wonderful once in a lifetime trip. The amazing blessings of the trip (limited waiting, free

access to parks, etc) were only possible because of a life altering, life threatening, or fatal

illness. We met other wish families, who are struggling with their own diagnoses. Some

families were celebrating the last treatment and being cured, for other families there is no cure

and the trip was a needed break.

 

Just like much of life, January was filled with amazing blessings and moments of struggle.

The blessings outweighed the struggling moments this month and for that we are grateful and

will try to cherish those moments for the times that the struggles are greater.

 

We are so thankful for the support, prayers, and love we have received from our friends and

family. Peter may not have won the genetic lottery but he did win the best group of friends and

family a kid can have.

 

Until next time Choose Joy no matter if you are watching fireworks over a castle or watching

your dreams of the future crumble.