By: Ryan Beck
May’s blog is personal but hopefully it will create dialogue for some thought, discussion, and support.
I am a mom of two beautiful boys ages 3 and 16 months. They are the reason I get up in the morning (literally – because they are shouting at 5am that they are ready to start their day). I always knew that I would do everything and anything to make sure they stay happy and healthy. Currently, we are closing some chapters in our lives which include some significant medical issues with my youngest. The first 13.5 months of his life were the scariest moments of mine. My baby #2 was born prematurely via emergency C-section under general anesthesia due to fetal decelerations. He had to be revived and treated with oxygen immediately following delivery (something I learned after reading the delivery notes-since I wasn’t conscious for the event – and yes, having a delivery like that was traumatic). When we got home, he felt different. Since he was our second, my husband and I knew what “newborn fragile” felt like and we aren’t the type to get overwhelmed by the delicateness of a new baby, but baby #2 felt fragile, period. And he was. To make a very, very long story short, our little guy has had multiple procedures and seen teams of specialists at hospitals all over the country from Fargo ND, the Medical University of South Carolina, Boston Children’s Hospital, and finally Mayo Clinic of Rochester MN where we have decided to continue care. No penny went unspent when we needed to travel all over the country to investigate his issues. (Thankfully we sold our house one month prior and dedicated those funds to his medical treatment.)
We live 2000 miles away from any other family members. I am thankful how my husband and I have been able to deal with the chaos together as a team. We get together, share, comfort one another, and create a plan of action to move forward.
I wanted to share my “take away” advice of what I have found helpful dealing with your medically fragile child.
1. ALWAYS TRUST YOUR GUT: I can’t emphasize this point enough. Always trust your mommy/daddy instinct. I knew something wasn’t right with my little guy and I fought my way to get the answers and treatment I felt comfortable with moving forward. I was a Dragon. A certifiable B.I.T.C.H. to get what I wanted and get the appointments needed – right away. Do what you have to do. Get second, third, and sometimes fourth opinions until you feel like no stone went unturned and you got prompt cohesive care for your little one.
2. COMMUNICATE with your Spouse/Partner/Best Friend. It is totally normal to have different reactions to different information being handed to you –especially information regarding your child’s health in the future. But what is vital is taking the time and candidly sharing with your significant other your perspective and what scares you the most about the diagnoses. When emotions are honestly brought to the table, as a couple you are then able to create a supportive plan together for treatment moving forward.
3. SHARE 3 GRATITUDES DAILY. My husband and I do this and it WORKS. We take turns sharing 3 things we are thankful for each day before we go to sleep. When we have been faced with incredibly stressful days, these always had me ending my day with a smile and appreciation of the good things in life. But, I totally get it – days can get shitty. But trust me, even the simplest gratitude sharing can help reshape your mindset. (I remember once, after a very long day, I was thankful for a south facing driveway – even the small things can reshape mindset.)
4. APPRECIATE ONE ANOTHER FOR THEIR INDIVIDUAL ROLE. My husband works very long hours and he provides for the family. I own my own business so I am able to work from home. I am lucky to be able to have this time with the boys and be the one offering them support & comfort. I am usually the one on the phone, making the doctor appointments, going to the local appointments, following up, asking the questions, and creating a sense of normality for both of them. I recognize Keegan and I are two instruments in an orchestra. Although different, our roles are an integral component and vital for our family as a whole.
5. JOKE and SMILE. Make each other smile over the little things. When dealing with medical treatment for your child, everything is serious. My entire demeanor has changed since dealing with this experience. But laughing and smiling are so important. I remember there was one night where we heard something and looked at each other trying to figure out what specific alarm was going off - we had so many alarms in our house hooked up to our little man, when something went off – we weren’t sure if it was a movement alarm, high heart rate alarm, apnea alarm, low O2 sat alarm, fire alarm, or the clothes dryer. It was insane. But at moments like those where becoming overwhelmed would have been easy – it was nice to know we could have a laugh. Because it was ridiculous – we had a ton of alarms!
6. TAKE TIME FOR 1:1 TIME WITH OTHER SIBLINGS. This is really important to me and something that I try and work at every day. When my baby #2 was born, I mourned my one on one time I used to have with my first. But I also craved quiet, lazy newborn snuggles in the bed with baby #2. Neither of those things happened. Having one child with medical needs is exhausting, heart –breaking, and totally consuming. So I try really hard to make the one on one time with baby #1 because that is incredibly important to me. I also try my best to make sure he has a sense of normality with his weekly activities and social events.
7. TAKE TIME FOR YOURSELF. Honestly this is something that I struggle with because our life is so incredibly busy. But the days that I do get even 30 minutes to myself to workout – I am a better mom, wife and person. If I could give myself advice – I would say – always take at least 30 minutes for yourself. Hopefully, you may get an hour. Try for an hour.
8. GET RESPITE. If there is a way that your medical insurance/state health care covers respite, get it – use them as a resource. Use them so you can get a break and some help. Talk to your doctor or state worker to see if its assistance and resources are available for your family and how you can contract hours. We are eligible and this is something I regret not taking full advantage.
9. SPEND FUN TIME TOGETHER WITH YOUR SIGNIFICANT OTHER. As I said before, when dealing with incredibly serious decisions, life can get pretty heavy. Remember to have fun together and enjoy each other’s company. Leaving the house for date night for us was not a reality since I didn’t trust anyone else hooking our little guy up to monitors and his oxygen before he went to sleep. But my husband and I do make time for each other. We cook homemade pizza every Friday night and watch Shark Tank or Dateline. It isn’t glamorous – but I look forward to our Friday nights together all week. Setting aside that time together is a mental reprieve from all the other stressful situations going on.
10. TAKE IT ONE DAY AT A TIME. Stay ahead of the game, but don’t worry too much about the “what ifs”. Focus on positive things you can for yourself and your family one moment at a time and everything will work out. Things do get better. Hang in there.
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5/1/2014 02:28:01 am
This is such a great post, especially for parents with medically fragile children. My daughter was diagnosed with hydrocephalus at 6 months old and we have endured dozens of surgeries. There were days that were so hard. But, a lot of the tips you mentioned really did (and do) help parents get through. And, I completely agree with you about #1. You are your child's best advocate. Fight for them and get the attention they need and deserve whether it's second opinions, faster appointments, or just more thorough information for yourself.
5/1/2014 06:03:54 am
5/1/2014 03:33:10 am
Thank you for sharing these important lessons. You and your husband are clearly a blessing to one another and your children!
5/1/2014 03:34:52 am
Thanks for opening up about such a personal issue! I'm sure there are other people who will benefit from you sharing your story. And great tips for taking care of yourself!
5/1/2014 03:45:19 am
I thank god every day that my boys are both healthy. I can't imagine dealing with anything like that.
5/1/2014 03:46:19 am
I am sorry you had to go through such an experience, I congratulate you on sharing your story because other parents out there can read it and learn from your experience. Wishing you and your family the best.
Great post with fantastic suggestions. I haven't had to personally go through anything like that with my kids - but I definitely agree communication and learning to joke and take time for yourself are all important things for keeping your emotional strength and sanity in tact.
5/1/2014 10:20:04 am
This is amazing, and so spot on! Thank you so much for writing and sharing this post.
5/1/2014 11:19:01 am
Thanks Lisa for sharing. It is nice to have support from other moms and dads that are currently starting care or have already been through the system and hurricane of emotions. Wishing you and your family the best. xo
5/1/2014 01:22:08 pm
Good positive advice, Glad you had your hubby thru this.
5/1/2014 02:18:00 pm
So sorry you had to go through this. I experienced something similar with my middle child. I was crushed, confused, and lost, but my husband and I made it through.
5/1/2014 03:00:48 pm
This was beautiful Ryan, thank you for sharing your experience with us.
5/1/2014 03:43:47 pm
Great tips. My daughter was a chronically ill child, and trusting my gut always helped me out. I know there were times I knew something was wrong even when no one else believed me!
5/1/2014 05:53:20 pm
I'm so sorry you've had to go through this and think it's very generous of you to share your story to help others. Sending out only good thoughts for your family.
5/1/2014 06:04:25 pm
I am sorry that you are dealinag with such serious health issues with yoru childrne. It is great that you shared this resource so that you can help other parents in a similar situation.
5/2/2014 12:47:49 am
Great post, no one knows your child better than you. My daughter has asthma and has been hospitalized 2X with collapsed lungs and pneumonia. I know when it will all start and what to do know after learning the cues.
5/3/2014 05:09:28 pm
Wow, I can't imagine my daughter being so sick!
5/4/2014 02:00:56 pm
Thank you for sharing this. You are very strong and a real blessing to your family. It's difficult when your child goes is ill, let alone been in such a fragile state. My son went through a really scary moment and I was scared that I wouldn't be able to get through it. You're right though. We do need to stay ahead and try not to worry about the what ifs.
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