Category Archives: Special needs children

Christmas 2022

Faith & Hope, Parenting, Special needs children, , , ,

It’s hard to believe this is our 9th Christmas with Gideon. After his diagnosis, I never thought we’d get one Christmas with him; but here we are celebrating the birth of Christ for the ninth time with our little man!

I’m not gonna lie. This Christmas was rough. Kevin and I were up till 1:30 am getting all the things ready. Like usual, we waited until the last minute to assemble ride toys & electronics. But it’s never been that big of a deal…. until this year. Unfortunately for Kevin, Nya’s ride toy might as well have come from IKEA. Kevin spent hours building that thing from the ground up. Meanwhile, the new electronics proved my age and left me feeling uneducated.

Why do we do this to ourselves?

We laughed while saying all these things should come with a disclaimer on the box that says, “Estimated assembly time- several hours.. Do not attempt on Christmas Eve!”

We were asleep for just over an hour when Gideon woke up with a dirty diaper. Did he go back to sleep? Nope. Not until 6:30 am. The word exhausted doesn’t even begin to describe us at this point.

Of course our other children were up around 8 am. Praise God for Laynie! She made the littles Christmas pancakes (red and green with whipped cream and sprinkles), giving us an additional hour of sleep. God knew we needed her first in the birth order! Could you imagine if Josiah was our oldest!? Lol.

Christmas 2022 was the first Christmas we opened presents without Gideon present. He slept till noon and we felt bad making the other kids wait for him. Plus, he still doesn’t grasp the concept of opening a gift. He hates the feeling of paper and would much rather just be held. So it worked out.

Nevertheless, guilt (and fear) hit me hard as I watched my babies open their gifts while Gideon slept in. It was a visual reminder of what Christmas will look like one day, when Gideon is gone. It’s not a thought that enters my mind as much anymore because Gideon continues to defy the odds. But every now and then, especially when deprived of sleep, my mind goes there and I have to remind myself of the promises of our God.

“Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day. For our light & momentary troubles are achieving for us an eternal glory that far outweighs them all. So we fix our eyes not on what is seen but what is unseen, since what is seen is temporary but what is unseen is eternal.” 2 Corinthians 4:16-18

“You keep him in perfect peace whose mind is stayed on you because he trusts you.” Isaiah 26:3

“For this world is not our permanent home; we are looking forward to a home yet to come.” Hebrews 13:14

The truth is that none of us are promised tomorrow. Even though I may think Gideon’s life is shorter than most, any one of my children could be called home first. It’s why we love big every day. It’s why we seek reconciliation and forgiveness quickly. It’s why we make the most of Jesus as well as every single moment we have, whether it’s a holiday or not.

Jesus is the reason for the hope that we have.

Lord, teach us to number our days that we may gain a heart of wisdom. -Psalm 90:12

Mother-Son Dance 2022

Faith & Hope, Special needs children, ,

The daddy-daughter dance rolls around every January and for the past 2 years Josiah has expressed how “unfair” it is that he can’t go just because he’s not a daughter. 😂

So you can imagine my excitement this year when I realized that there is a Mother-Son Dance, and apparently it’s every September! So this past weekend I had the opportunity of taking Josiah for some much needed one on one time.

He ran back and forth- playing golf, dancing and snacking. He finally got tired enough to get his face painted. Then he played more golf and did more dancing. The funniest part is when he picked his tattoo. I didn’t have my glasses so I didn’t see the tiny writing above his choice of hearts. (I honestly thought it was a squiggly decorative line.) As the guy was airbrushing the hearts on his hands, he asked me, “You don’t want the Bad Girl airbrushed, right?” I almost spit my drink out! Obviously I didn’t see that! Everyone around the table had a good laugh.

And while we had the best time ever, my heart was conflicted because we didn’t take Gideon with us. I bought 3 tickets with the intention of taking both boys; however Gideon hadn’t been feeling well and about hour before we left, Josiah asked if it could just be the two of us.

My heart was broken for both boys. Kevin reassured me that Gideon would most likely rather have time with me in the hot tub later and that Josiah would benefit from my full attention on the dance floor. I couldn’t argue with that. Nevertheless decisions like these seem minor to some, but are hard for me as a mother.

Balancing the needs of multiple children is tough and when you add in a child with special needs the weight at times feels unbearable. I’m thankful we serve a God who carries us when we feel overwhelmed.

A Wish with Wings

Faith & Hope, Parenting, Special needs children, ,

I have never felt more helpless than I did this past September, when our son Gideon was placed on hospice care. Since Gideon was 7 months old, we have known that his life expectancy would be short. However, that did not seem to change the shock of it all when he suddenly fell so ill.

End of life planning for a child is something no parent should every have to do. During his time on hospice, I called a funeral home to begin preparations should that time arise. We spoke with our pastor, planned music, gathered photos, etc.. And then something amazing happened. Gideon pulled through it all. On November 7th, he was discharged from hospice care. And just like that, two of the worst months of my life were over. The weight on my heart was lifted and I could breath again.

Maybe that is why I’m feeling extra emotional this Christmas. You see the truth is, when he was originally diagnosed with PBD, we never thought we would get even one Christmas with him. But as I reflect on these past six (almost 7) years, I’m reminded of an obvious and important truth.

None of us are promised tomorrow.

Any one of my kids could be taken from this life in an instant, not just Gideon. My able bodied children could become disabled in the blink of an eye. There are no guarantees of health and prosperity in this world.

That’s why I love the Christmas story. God knew before the foundation of the world how it would all come to pass. Jesus’s birth, offering the hope of our salvation reminds me that even when things seem to be out of our control, they are not out of His control. God’s working all things for our good and His glory.

And I can rest in that truth.

After my last post, a friend reached out and suggested some other organizations, similar to Make-a-Wish. A Texas organization called A Wish with Wings, has been granting wishes for kids with life threatening medical conditions since 1982. And although they don’t grant swim spas, in two short months they were able to give our boy a hot tub!! And the best part is that they got it done 3 days before Christmas!!

We would like to thank A Wish with Wings, Aries Spas of Rockwall, and Gary Winkles with Electrical Specialists of America for making Gideon’s wish a reality. We are eternally grateful for the many memories we will make with him as a family in these waters.