All posts by Samantha Jolicoeur

Moving Forward

Faith & Hope, Parenting, Special needs children, ,

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Moving forward can be scary. When we move forward that means we leave behind what is comfortable and we venture towards that which is unfamiliar to us. Our entire journey with our son Gideon feels like the never-ending uncertainty of moving forward.

Last Thursday, after fasting and being sleep deprived, we took a very mad Gideon to Dallas Ear for another ABR (Auditory Brainstem Response….that’s fancy talk for a sedated hearing test). As always the doctors, nurses, and staff took very good care of our little man.

Unfortunately, the test results came back only slightly better than his April ABR (that is due to the fact that Gideon had fluid in both ears back in April). So as it stands now, our son is still severely deaf in his left ear and profoundly deaf in his right ear. This news was not shocking to us, because we’ve always known that many children with PBD lose more of their hearing (and vision) over time.

Aside from that crappy fact, the good news is that Gideon is now considered a candidate for a cochlear implant (CI). There are still a few hoops to jump through, but if everything is anatomically correct inside G’s head, we can move forward with the CI process.

While I am excited by this possibility of moving forward, I’m also a little uneasy. If I can be so honest, I have to admit that if Gideon had his vision, I’m not sure I’d be considering this route for my son right now. If deafness was the only challenge he faced, I think I would want Gideon to be able to make the CI decision for himself. But the unfortunate & sad truth is that my son cannot see & his life expectancy is short.

So what’s a parent like me to do? I’ve gotten lots of feedback from both sides. We have met several families who have been so pleased with the decision to go the CI route and the kids seem just as happy with their ability to hear. I’ve also heard from the deaf community, many of which make a great argument that there is not anything wrong with being deaf and I agree! Deafness does not stop people from living happy, productive, and fulfilling lives. My cousin and his wife are living proof of that of that truth and very much an inspiration to everyone they meet.

At the end of the day, our situation is simply unique. And no matter what we decide, moving forward is scary. Kevin and I have the daunting task to decide what is best for our terminal son. As I finish typing this out, tears are still wet on my face and truthfully I don’t want to make decisions like these…this part of life sucks. But I also don’t want my son to live his shortened life in both silence and darkness.

Since he can’t see my face, I want him to at least hear my voice.

Thank you all for your continued prayers as we journey down this road with our son. We are trusting in the Lord and in His timing for everything as we move forward.

 

 

Omaha Bound

Special needs children, , , ,

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The Jolicoeurs are on the road again!! This time we are Omaha bound! What’s in Nebraska, you ask? The 2015 PBD Family & Scientific Conference!!

We are SO excited to meet other families like ours as well as doctors & specialists who are dedicated to researching and caring for our PBD kiddos.

We are coming from Dallas, so its going to be a long trip. We are 5 hours in and have already made 3 stops…one rest stop, a Braums with NO changing table (grrrrr), and of course, Cracker Barrel.

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Thankfully we have family in Wichita, KS so we will stay with them tonight and finish the last half tomorrow.

Shout out to the Robinson’s for letting us borrow their 4 Runner. (My vehicle is too small for all our bags plus G’s chair; and the A/C is broken in Kevin’s Vue.  Womp womp.)

We are SO excited for this conference!! Stay tuned for pictures of Gideon with all his new friends!!!!

In the meantime, we are Omaha bound!!

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On a side note, I spoke with a manager at Braums. She told me they have been asking corporate to install changing stations. She gave me the number below & I spoke to their customer service.

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They told me they were in the process of installing them into all their locations nationwide, but she couldn’t give me a set date as to when it would be complete. If you don’t mind, please take time to call them yourself. If enough of us call, maybe they’ll make this a priority!! Nothing worse than having nowhere to change your child.

 

Family Retreat Day 4

Faith & Hope, Parenting, Special needs children

Today was not the last day of camp, but it was for us. As I think back over the events of today, I can’t help but cry all over again.

Family Retreat day 4 was bittersweet. We always start the day with inclusive worship. Nothing is more beautiful than to see God’s children, able and disabled, praising the Lord. Some with hands raised and other full-out dancing in the aisles. It’s freeing and pure…and I never wanted it to end.

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The message today had me in tears. I’m planning a separate blog about it, because it’s too much right now for all that I want to share with you.

Kevin and I went skeet shooting this morning with some great people. I opted out of shooting myself because I didn’t want to nurse a bruised shoulder for the rest of the day. Lame excuse, I know. I’m expecting to catch flack from the Allens.

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The rest of the day we just hung out. We went to watch Gideon swim with his STM. Check out my FB page later for that video. It is precious to watch.

The kids came back to us with frames they made containing some sweet photos. For our 3 pm – 5 pm family time, the kids got to paint real miniature horses! We didn’t do Gideon’s hand in paint but he did enjoy petting them eventually. (The paint was non toxic and washable in case you were worried for the horses..)

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Afterwards we went back to the lake so Laynie could show off on the blob and slide. I still can’t believe she swam in the lake. My mom is going to freak out.

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And finally the night ended with the long-awaited talent show.

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This is where the kleenex would have really come in handy. My sleeves are still crusty with snot even as I type this. Imagine children with all forms of disability singing, dancing, doing magic tricks. And even their siblings were welcomed to perform. Some did solos, some did duets…even moms and dads performed with their kids.

Laynie sang the books of the Bible to represent for the Jolicoeur family. We were so proud.

Nothing was turned down & nothing was off limits. When someone messed up and forgot the words or moves, the audience encouraged with cheers and clapping. And everyone got a standing ovation…from the first act to the 40th.

Joy and praise. It’s how the day began and it is how the day ended. We were sad to leave but as we drove back tonight we decided that this will be our annual vacation.  True respite for us. Total fun for our kids.

Thank You Joni and Friends for making this a memorable and restful experience.