Melody (full Trisomy 18) turned five years old! She got a special new dress for the occasion…
and with good reason.
It is not every day a little girl celebrates her 5th birthday with 230 of her closest friends! We celebrated Melody’s 5th and had an exceptionally sweet celebration. We are ever so grateful for the many people who value her life.
Our wonderful friends from church helped us prepare for this grand event.
The day before the party a car pulled up in front of our house. It was none other than Melody’s grandma and great-aunt from California! They surprised us by joining us for this significant milestone.
They, along with many other people from church, started early in the morning to help prepare the gym before the church service.
With much help from our friends from church we had an enormous amount of wonderful food.
After the meal Miss Melody showed off her new set of wheels. When our pastor announced that it was time to sing to the birthday girl she made her grand entrance in her pink Porsche (see video above), contributed to by several relatives, and adapted by her dad.
For the first time in her life children were running to keep up with her. I think she rather enjoyed it.
Her body guards made sure she was safe at every turn.
Her little buddy Jonah wanted to make sure to wish her a happy birthday.
The church youth choir sang 10,000 Reasons and did a beautiful job with it.
Her dad and I shared a little about Melody’s life with much gratitude for our amazing community of friends and family who have come along side us on this journey.
What a privilege and honor it was to have Sandra Coulson attend Melody’s party! She is a speech therapist who has a system for helping people with sleep apnea and countless other things. She has completely changed Melody’s life by transforming her breathing in a remarkable way. When Melody was about 18 months old she had a sleep study done. The results: 100 apnea episodes in an hour; ten is considered severe. Her oxygen levels while sleeping would dip dangerously low. Within one week of seeing Sandra all that started to change. Her oxygen levels now while sleeping are in the mid-90’s, and she has no visible signs of apnea. We have no words to adequately express our gratitude for Sandra.
There are many children who appreciate Melody’s life. These boys are admiring how much Melody has grown. She is still little, but has definitely come a long way from her tiny 4 lb., 14 oz. start when she was born.
There was no shortage of dessert for this birthday party, including cake…
homemade fudge truffle cheesecakes…
Our children along with the Powers family sang “I Stand in Awe of You”. We do stand in awe of God and all He has done, not just in the victories, but also in the difficult times. They also sang “In My Heart There Rings a Melody” – Melody’s little theme song.
Our children, along with two other families, did a skit to help teach the children about being sensitive to those in a wheelchair. It was so cute!
After the skit we had a “disability race”. The children had a great time as we continued with the theme of encouraging them to reach out and demonstrate love to those with disabilities.
The children also played egg and spoon races. This little guy was playing it safe by not going too fast.
Our little friend Enid is no stranger to the disability world. Her sweet little brother Charlie had Down syndrome. Due to a medical complication at the beginning of his life he went to be with the Lord close to a year ago at 18 months of age. What a blessing to have her precious family join us in celebrating Melody’s big day!
When Melody was born she was sent home on hospice. Her amazing hospice chaplain Paul blessed us by coming to Melody’s party. When Melody came home from the hospital on about day 20 of life, the hospice nurse arrived shortly thereafter. The reason for the rush, unbeknownst to us, was that there was concern on the part of her medical team that our fragile little girl would not even survive the drive home in her special little car bed (too weak for a car seat). She has come a long way from those days!
Here our friend Hannah is helping with the games. She organized the “disability” game, and she did countless other things to help prepare for this party. Her mom Jamie organized Melody’s first birthday party. Sadly, Jamie finished her race here on earth. I was not sure how we could ever pull off a party like this without Jamie. When her daughter Hannah offered to help I knew we were in good hands – she is just as amazing as her mom!
The birthday girl really enjoyed her party. Thanks to the help of her occupational therapist Dana the noise did not bother her like it would have in the past. She was a happy girl for her many fans. Melody is making incredible progress with her OT and her remarkable speech therapist Kay. Stay tuned for a future update giving more detail on Melody’s many advances.
“I will praise You, for I am fearfully and wonderfully made;
Marvelous are Your works,
And that my soul knows very well.”
To see the full version of I Stand In Awe of You go here.
To see the full version of In My Heart go here.
To see the full sensitivity skit go here.