Being a father is the most important and toughest job in the world. Father’s are called to show unconditional love and discipline. They’re called to be patient and forgiving. They’re called to provide and protect. They’re called to be moral and compassionate. And because they’re called to be selfless, they must die to themselves daily.

I’ve watched the two most important men in my life answer the call to display these qualities- my father and my husband. Sometimes I laugh at just how much they have in common. With the exception of height and bell peppers, I pretty much married my father. But there’s one commonality they share, that makes them stand out from the majority of fathers- they’re both dads to a child with a disability.

For the past 17 years, I’ve watched my father come alongside my mother to take care of my sister’s most personal needs. He has never been hesitant to help her dress or go to the bathroom. When most men bail on their families because the disability is too much, my dad chose to stay. While most retired men are playing golf and traveling, my dad is laying hard wood floors in my sister’s house.

I do not take for granted how lucky I am to have a fiercely loyal dad, because I know they are few and far between these days. And I rejoice daily because God has blessed me with a husband who is just as loyal to meet the needs of his family.

When Gideon was diagnosed, Kevin (and I) grieved the death of a dream. He was not going to have the typical father-son relationship he planned. But that hasn’t stopped him from being the best dad he can be for Gideon and for Laynie.

Kevin starts his day and ends his day helping me with the children. I never have to ask him to help or play with kids. Five minutes after walking in from work, Laynie already has bows in his hair and a doll in his lap. I’m confident that Gideon spends more time in his father’s arms than he does mine… and I’m at home with him all day! Kevin has always been a present, hands on dad; and to say I’m grateful would be an understatement.

So to my dad and to my husband, I want to say Happy Father’s Day. I celebrate you, not just today, but every day. Thank you for unconditionally loving & disciplining your kids. Thank you for your patience and your forgiveness. Thank you for all the ways you provide and protect. Thank you for being compassionate men with good morals. Thank you for being selfless.

It’s all these qualities that you’ve displayed that help show your kids the heart of THE Father.

John 15:12 “This is my commandment, that you love one another as I have loved you.”

Proverbs 22:6 Train up a child in the way he should go; even when he is old he will not depart from it. 

Yesterday was Gideon’s follow up appointment with the ENT. When we saw him three weeks ago, we discovered that Gideon had a chronic build up of fluid behind his ear drum. They prescribed him some meds and he was to be seen back in 3 weeks to discuss & schedule tubes.

Yesterday’s appointment was supposed to be just a formality- check the ears and schedule the ear tube surgery. However, we were unprepared for what the doctor had to say..

I think unpredictable is a great word to describe my son. In fact I think unpredictable is a great word to describe PBD…as well as life in general.

After looking into both ears the doctor was extremely surprised- one ear was 100% clear and the other was 80% clear. He said he was shocked because it’s very rare that a patient will surprise him. Yesterday, Gideon was that patient.

So we will go back to the ENT in 6 weeks just to make sure his ears haven’t filled back up.

My take away lesson from yesterday is that most things in life are unpredictable. I think that’s why Scripture teaches us not to worry about tomorrow. Often times we have no control over the circumstances that come our way- we CAN however control our response to them.

Philippians 4:4 says, “Rejoice in The Lord Always..” Hard truth, yet effective, appropriate, and necessary for all of life’s unpredictable circumstances…good and bad.

Thanks for taking time to ask me more questions!! I love talking about my little boy and family.

1) Did you know about Gideon’s condition when you were pregnant?

No. I opted out for all prenatal testing. My pregnancy with Laynie was completely healthy, so I saw no need to test when we were expecting Gideon. When he was finally diagnosed at 7 months, we were told prenatal genetic testing would not have done us any good because his disorder is so rare. A more specific test would have needed to be done.

2) Which parent is responsible for Gideon’s genetic mutation?

Both. There are so many different kinds of mutations within the peroxisomal disorder umbrella. Sometimes it could be one parent’s mutation passed on; however, in our case, Kevin and I are both carriers of a mutated recessive gene. If you remember 7th grade science, you’ll know that means Kevin and I have a 1 in 4 chance of having a child born with PBD with every pregnancy.

3) Is Laynie affected by PBD?

Maybe. She could be a carrier of the mutated gene. She has not been tested yet because she was 3 when we got G’s diagnosis. Since she’s not directly affected, we didn’t think Laynie needed her blood taken/tested right now. This will be something that she (and her future husband) may want to be tested for before having children of their own.

4) If you were to get pregnant again, what would you do?

 If/when that happens, then I’d be a mom to three blessings instead of just two.

5) How should I interact/play with Gideon? 

Just treat him like you would any other kid- talk to him, touch him, love him. If you have facial hair you’re already a shoe-in for his favorites list. I always tell people to place their hand under his so he knows for sure you’re there. Chances are, he’ll reach out and try to touch your face. (If he sticks his finger up your nose, just go with it. Lol)

6) Why does he rub his eyes all the time? Is he sleepy?

 If he’s actually rubbing his eyes then yes, he’s tired. However 90% of the time he’s just putting pressure on his eyes. Apparently kids with multiple sensory impairment do this. I like to joke that he’s just blocking me out so he can concentrate. 🙂 It also could be that the light is too

7) Which grandparents carry the mutation? 

We don’t know, they have not been tested. And to be honest, we don’t think they need to be tested. This mutation is no ones fault.

I really enjoy answering your questions. Please don’t be afraid to ask. All parents (special needs or not) would rather you ask than assume.