Advice From a Novice Special Needs Mom

This past year has been full of many surprises. The vast majority of them have been incredible. Nothing makes my day more than when my handsome 15-month-old flashes me one of his “melt-your-heart” smiles or erupts into laughter that comes from deep down in the bottom of his gut. I just want to put those moments on repeat… all day, everyday!

Then you have the not-so-great moments. The ones that you’d rather not talk about for fear of turning into a ball of emotions at the drop of a dime. Like finally getting your child home from a 2-week stint in the PICU, only to return a week and a half later because the problem wasn’t resolved and oh guess what? The holidays are just around the corner. Not only that but the problem got worse and now you are going on 8-weeks (and counting…) of that lovely hospital life, all the while in the “outside” world, pumpkins turn into turkeys which then turn into Christmas trees and presents and so on and so forth.

Because we’ve spent so much time in the hospital lately (and because I’m such an expert in this field now), I’ve compiled a list of advice for my fellow special needs mamas and papas or any parent with a sick child. Take it for what it’s worth…

1. No parent-to-be book in the world can prepare you for any of this

Throw in a curveball like a spina bifida diagnosis and you may as well just throw all of those parenting books out the window! I have 3 books that are still sitting on the shelf. The best advice I still receive to this day are from other Spina Bifida mom and dads and friends we’ve met through LPA connections. They tell it like it is and offer the best advice! The ones who have been through it or are going through it with me have been the greatest support system. Some of my favorite groups on Facebook include: Spina Bifida Parents Facebook Group, United By Spina Bifida, LPA Parents Page  and Achondroplasia!!

2. Pack a comfy blanket and pillow in your car

I should just have a bag packed and ready to go by now. That “just in case” bag if an unexpected trip to the ER arises. You never know how long the stay will be and trust me, the rough hospital blankets and pancake pillows don’t cut it! Oh and don’t forget a phone charger.

3. Doctors aren’t always right

Nobody knows your child better than you. If something doesn’t seem right, talk it out with the doctor. At one point Maddux was on 3 different antibiotics at once and just wasn’t getting better. I felt from day one that he was having an allergic reaction to one or all of them combined. Sure enough, he was having an allergic reaction. They changed up the meds and he started feeling better right away. Your mama (or daddy) instincts are almost always right!

4. Ask TONS of questions!

No one is going to advocate for your child better than you. If something doesn’t make sense or you aren’t seeing the results you want, always ask questions! I’m pretty sure the medical team at LLU Children’s Hospital has a note in Maddux’s chart about his “hands on parents” and how we require an explanation for so much as an ointment change for our son’s diaper rash! It is your child and you have a right to know what’s going on at ALL times.

5. You ALWAYS have the right to a second opinion

There have been plenty of times where I’ve felt like our hands were tied. Where I’ve felt like maybe Maddux wasn’t getting the best care that he needed. And I’ve learned along the way that you always have options. ALWAYS. You may have to do all of the research and follow up but don’t ever let anyone tell you that you don’t have another choice. I remember the earliest we could get in to see a Geneticist in our medical group to evaluate Maddux for dwarfism was 3 months out. Not ok. There were precautions we needed to begin taking immediately if he indeed had dwarfism. So I got in touch with another genetics office in a different county and arranged to have Maddux seen within a month. Fortunately, our  insurance approved the request and we received his achondroplasia diagnosis months earlier than we would’ve had we waited around for the initial appointment. Which means we were able to provide Maddux with the care he needed much sooner.

6. Request a hospital sitter

My husband Joe and I work full time jobs and sometimes, long hours. If you’ve ever had to stay overnight in one of those tiny convertible bed/chairs, try to get some sleep and then attempt to appear refreshed day in and day out, then this one is for you. If your child requires around the clock supervision, ask for a sitter. In addition to the nurse, the sitter is required to stay with your child at the bedside throughout the duration of their shift. Because Maddux has had up to 3 external drainage tubes placed in his brain until he can have shunt surgery, he requires 24/7 supervision so he doesn’t yank out anymore stitches or worse, the entire tube! This service may not be offered at every hospital but it can’t hurt to ask.

7. Don’t take ‘no’ for an answer

An incredibly knowledgeable and helpful RN gave us this advice. Actually, there have been several amazing RNs to give us this advice but in this instance, I felt completely helpless and I had reached a boiling point of frustration. Maddux has a cow’s milk allergy and can only have a very specific type of formula (sold in stores everywhere, by the way). He was hospitalized just weeks prior to his latest stay and was provided the formula he needed. This time around we were given the run around as to why the hospital wouldn’t provide the formula that our son needed. So we ended up bringing it from home to ensure he wasn’t being fed something else that would mess up his system. Long story short, the charge nurse on duty gave me some ridiculous excuse as to why they couldn’t provide my son with this formula. It didn’t seem right to me. So I went up the hospital chain until I got the answer I wanted and wouldn’t you know it, a day later, 3 cans of the correct formula appeared and we haven’t had a problem since.

8. Show your gratitude

We have been so fortunate to have some very caring and loving doctors, nurses, sitters and therapists in Maddux’s life. It is the ultimate compliment when an RN asks if they can be my son’s primary during his hospital stay. I know it’s not an easy job, especially when he is very sick but we wholeheartedly appreciate the love and care these amazing individuals selflessly give my child. Thank your caregivers and let them know when you notice what a terrific job they are doing.

10. It is totally OK to take some time for yourself

Do yourself a favor and go see a movie. Get a pedi. Or break away for a (much needed) stiff drink. Hospital life can be the pits and every now and again, you just need a break from all of this medical mumbo jumbo.

11. Do NOT beat yourself up!!

I hear this one all of the time from other special needs parents. This is not your fault. I repeat, this is NOT. YOUR. FAULT. None of it. You will go crazy replaying all of the scenarios in your head. Didn’t I take enough folic acid prior to trying to get pregnant? Were the herbal supplements I was taking prior to conception completely out of my system when I conceived? Or the fertility meds… did those cause my son’s spina bifida???? I could go on and on and truthfully, I still do sometimes. It’s hard not to blame yourself. But it is not our fault. And looking into my son’s big brown eyes, I know for certain he was made perfectly the way God intended for him to be. And so is your little one.

Merry Christmas & Happy New Year to you all! 

Maddux

Holiday hospital gown & Z-flo pillow cases by: Sewn Up Pieces

8 thoughts on “Advice From a Novice Special Needs Mom

  1. I love you and am very proud of the caring, loving mother that you have become. Maddux couldn’t have been Blessed with better parents.

  2. You are such a gifted writer and I’m glad you can articulate such wonderful advice for other parents to read about!! Thinking of you and your family this Christmas and always and sending lots of love your way!!! Love being able to read what you’re experiencing!! Thank you so much for sharing <3 Love to your precious, adorable Maddux 🙂 Lucky nurses!!!!!

    1. Thanks Jess! Sometimes it’s hard to be so honest but it’s been very therapeutic for me and I hope in doing so, that we can help someone else who is going through or just beginning a similar journey. Hoping I get to meet your newest addition soon after he arrives! Merry Christmas to your beautiful family 🙂

  3. Amazing and heartfelt advice Desiree!! Your journey, Maddux, and both you and Joe are inspirational. Your strength during this trying time is admirable and I hope you guys will always know we are here for you guys!!

Leave a Reply

Your email address will not be published.