Monthly Archives: January 2014

Moms, I owe you an apology

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Before I had my son, I judged. I mean really judged. Laynie was a little over 2 years old, and I remember talking with another mom who was struggling, and I kept thinking to myself, “Raising Laynie has been so easy. What is she doing wrong that is making parenting so hard?”

Then I had Gideon.

I get it now.

Some kids just require MORE. They require more of your physical, mental, emotional & spiritual capacities. And sometimes it’s more than you have to give. With everything else that life throws our way, sometimes it’s just too dang much.

I’ve been extremely blessed because I have never had to deal with a lot of major parenting issues. Especially in the realm of spit-up. Yes, I consider that major. My kids just never puked -not as infants, or as toddlers. To this day, Laynie has thrown up maybe 4 times. And 3 of those 4 times she caught her own puke in a bowl. The other time, she was in her car seat and caught her puke in a Fuzzy’s cup. Talk about easy clean up.

Ever since Gideon was born, life has just been a whole lot harder in general. And today was no different. Today I had my first experience with one-year-old puke… while he was in his car seat…while I was driving. Gideon has been battling a cough and the past few days he coughs so hard that he chokes and then pukes. He’s done it the past 4 mornings (and only in the mornings) and today was no different…. except that I had somewhere to be. Because it was later in the morning, I thought we had dodged the bullet and I carelessly put him in the car, with no precautionary measures in place… And then it happened. He puked all over everything.

This process was all new to me. And the suckiest part of it all was that I was alone.

I kept driving since we were almost to Laynie’s gymnastics class and when we got there, I put his car seat in the stroller and took him in…puke and all. Once Laynie was in class, I spent the next 35 minutes trying to clean up what seemed like a gallon of strawberry/banana puree and formula. I cried on the concrete floor (the ugly kind of cry) as I used baby wipes to wash him and his car seat. (Just for the record, they don’t soak up a whole lot).

I’m quite certain I was a sight for sore eyes. Looking back, as I wallowed in my self-pity, I’m sure there were moms that passed by & judged, just as I had before. Regardless of what they may or may not have been thinking, I was sad. And I felt utterly alone.

I wish I could say I brushed it off and the rest of the day I had a positive outlook. But that’s not what happened. I tried at first. I got Gideon and his car seat cleaned. I changed his clothes, threw away his brand new puke-saturated jammies, and sulked as I watched the last 15 minutes of Laynie’s class. We met up with Mimi, went to lunch and then I took Gideon to therapy while my mom took Laynie to Hobby Lobby. Gideon’s therapist said his session went really well and just as things were beginning to look up, Satan pulled my number, again. On the drive home, Gideon once more puked all over everything.

Seriously?!?!?

Seriously.

I got to my parent’s house to pick up Laynie and went through the whole process all over again. When it was all said and done, I was driving home thinking how many moms have gone before me and felt the exact same way I did today. It’s silly that we moms should ever feel “alone” in any of this craziness called motherhood. I’m sure someone is reading this post right now who has cleaned up puke more than 10 times in one day… if that’s you, God bless you. I don’t know how you do it/did it.

There are some things about motherhood that I would trade in a heartbeat… Cleaning puke is possibly number one on my list. But regardless of what crappy things we moms endure throughout our day, our babies need us. And we need each other.

Now that I have had time to reflect on my day (praise God, my husband is home!), I can honestly say that I learned a few things from today’s puke-fest.

First, I owe every mom I’ve ever judged a HUGE apology. I’m so sorry. I never thought I would be the kind of person to judge someone else for anything, much less his or her aim at parenting. Heaven only knows why I couldn’t see my own pride. Guess we can all thank Gideon for knocking me off my “motherhood is so easy” pedestal.

The second thing I’ve learned is that I cannot do this parenting thing on my own. Not only do I need the other moms who have gone before me, but I also desperately need the guidance of the Lord.  I mentioned earlier that some kids require MORE of us. There’s absolutely no way we can raise them relying on our own resources. It’s just too difficult. We will never be patient enough, kind enough or loving enough. We will never be able to forgive enough. We must draw on Him for everything- our strength, our compassion, our wisdom… it all comes from Him. Matthew 11:28 says, Come to me, all you who are weary and burdened, and I will give you rest.”

I don’t know about you, but today has left me weak and weary…and I need the kind of rest that can only come from Him. I need the kind of support that only comes from other moms who know what its like to clean puke with a wet-non-absorbent baby wipe!!

My prayer tonight is that you would find rest in Him as well. No matter what the day has vomited on you, please know that Jesus is all you need.

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Gideon’s Swallow Study Results

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So as some of you know, we recently went for a swallow study to determine whether or not Gideon was aspirating (inhaling fluids…milk/water…into his lungs) while eating. Many children with Gideon’s disorder require their liquids thickened because of this problem. Even though I was confident that he wasn’t aspirating, the information that this test would provide was necessary if we were to receive nutritional & feeding support through the Early Childhood Intervention program.

So we went to Medical City Dallas and found out, unfortunately, he is aspirating.

Two things about  this study. 1) It went SO much better than the GI test  and 2) Gideon screamed the whole time as he was being forced fed.

I tell you this because I think it’s important to note that Gideon only aspirated a small amount twice, within that 15 minute feeding session. I think that’s pretty darn good considering he was screaming!! Also, I think it’s worth mentioning that my son has not been in and out of the hospital with respiratory issues like a lot of these babies- which suggests to me that it’s not happening that frequently here at home. He’s a year old, never had any liquids thickened and (knock on wood) he’s never had lung problems!!

The concern about him eating arose in December, when Gideon officially started on a supplement called Betaine. This Betaine study is why we went to Omaha back in September. After being on the Betaine for about a week, we noticed that he stopped eating solids altogether and his intake of formula dropped by 2 ounces. We decreased his dose & stuck with it for a month because GI upset was a known side effect. When we stopped the Betaine, his appetite did not increase after a couple of weeks, so I agreed to the swallow study. This now allows us to receive help from ECI where his diet is concerned.

So his evaluation with the dietitian is this Tuesday and I’m anxious about her visit. Gideon is not taking the thickening of his liquids well. And we have these random shiny days where he anxiously eats solids…and then it’s back to formula all day for the next few days. The ups and downs are way high and way low, and frankly, I’m getting tired…. and a bit emotional. Especially where this thickening business is concerned. You need cross cut bottle nipples for that. Did you know finding cross cut bottle nipples in the stores here is like looking for Miley Cyrus at a church camp? I’ve been to four stores, one of which was Babies R Us, and NONE of them carried cross cut nipples!!! (That was a bad day and a whole other blog for that matter.)

So would you mind praying, yet again, for our son. I desperately want him to begin eating solid foods consistently again. And please also forgive my frustration on the matter. I knew having a child with special needs would be hard, but it’s all these small battles that seem to be weighing me down.

Most days I feel like I’m treading water so hard just to keep my nose above the surface.

Thanks for your prayers.

Milestone: Gideon turns one

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Websters dictionary defines milestone as “a significant event in life or history.” I think that’s a fitting description of what today means for our family.

One year ago today, God blessed us with sweet little Gideon. Now I know every child’s first birthday is special. For every parent, such an event comes all too quickly. You look back and think, “Wow, this past year was a whirlwind; can’t believe we made it through the sleepless nights, poop, & tears.” And that’s no less true for our family.

What sets today apart from other first birthdays comes down to a statistic. If you’ve followed my blog, then you know my son has a terminal genetic disorder; and so for Gideon, turning one is truly a milestone. When our son was diagnosed with PBD at 7 months old, our geneticist told us the only statistic she could find for this rare disorder was the following-

An infant diagnosed with peroxisomal biogenesis disorder that lives to one year of age, has a 77% chance of making it to school age. 

Obviously that makes today a pretty big deal for us. And it warms my heart to know that it’s a big deal to others as well.

Yesterday, I took Gideon up to my husband’s school because they took it upon themselves to celebrate his birthday as well. The love we felt yesterday is indescribable. The kids at Abbett all wore their “kiss the pig” t-shirts, had cookies, made cards and brought gifts. Mrs. Wade (sister of Abbett’s librarian, Jennifer) even made Gideon a huge quilt! The teachers and students decorated the outside of my husbands office and even Ellie May (the pig herself) made an appearance. I cannot thank Mrs. Elms and all the staff, kids and parents for loving us so much!

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As we celebrate Gideon’s birthday weekend (yes, he gets a whole weekend.. his party isn’t until Sunday), we just want to thank everyone who has lifted us up throughout this past year. It has definitely had it’s ups and downs, but we are wiser and better for them. We’ve learned the true meaning of “every day is gift.”

So please join us in savoring every day that’s given with the ones you love.

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Happy Birthday sweet boy.

Nothing else matters but today.

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