Finding the new normal

Posted on October 1, 2014 by jeffcuz

Finding a new normal is actually something quite common in the Cousins’ household.

Those of us with children with special needs know things change quite often, and we simply must adjust to do what we can for our young ones.

What’s unusual is the fact that we’re finding a new normal because of something good. J.P. is doing very well. He’s growing, and the backs of my wife and I are reaching their limits.

J.P. and Uncle Freddie — J.P. enjoys hanging out and learning from his uncle, Fred Royalty.

We were lucky to get help from Paige’s uncle, Fred Royalty, for the past two weeks. He flew to Central Florida after Paige was told to refrain from any lifting after suffering serious back pain.

Because of her back issue, we’re also working on getting some nursing assistance, as well as the installation of a ceiling lift.

Unfortunately, the nursing and lift aren’t in place yet, so we’re still dealing with having to do the lifting in the interim. My back has been holding up pretty well, and we’re hoping Paige’s back has had time to heal over the past two weeks.

Having Freddie in town was a huge blessing, and it was nice being able to spend some time getting to know him better. He was very helpful, and I know J.P. had a good time during his visit. Even just saying Freddie’s name now prompts a smile from J.P.

I’m so happy that J.P. is growing and thriving, but everything comes with a price, and there just don’t seem to be enough hours in the day anymore to get everything done.

There are things that simply must be done every day: Feedings, medications, laundry, school and therapy appointments. Karina must also be taken out, the floors have to be swept, dishes loaded, meals prepared, my job, etc.

J.P.'s physical therapy — J.P. gets stretched in physical therapy.

J.P. just had his reassessment for physical therapy. It was disheartening to see that his legs are worse than his previous assessment when it comes to how straight they should be.

It makes me feel like a failure. He needs to be wearing his Dyna-Splints every day, and it’s something that somehow doesn’t get done. We should probably be spending more time stretching his legs and arms. We should be getting him on his gait trainer. He did do better on that in this reassessment.

I really fear contractures, and I don’t want to look back some day and regret not making time for splints and stretching. We’re considering using botox injections again to help get his legs more flexible, and hopefully with that done, we can use the Dyna-Splints to make even more progress.

I’m also excited to share that I’ve updated the homepage at NavigatingLifesDetours.com. I hope everyone will check it out. If you haven’t already heard, there are nine chapters of the J.P. Story.

I have also updated the resources section with more links to the people and groups that have made a difference in J.P.’s life.

Jeff with Karina — Jeff and Karina after a trip to “hurry.”

Let me know if you have comments about the homepage.

One other reminder: We’ll be joining Canine Companions for Independence at their DogFest Walk ‘n Roll on Nov. 9, and we need more people to join Team J.P. at the event. If you can attend the event at UCF’s Memory Mall, please let me know. Donations to CCI are also appreciated. Please make sure to make them through our group page.

As always, thanks for your continued support of J.P. and my family.