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5 Life Lessons Only Parents of Children with Birth Defects Will Understand

5 Life Lessons Only Parents of Children with Birth Defects Will Understand

Birth defects affect one out of every 33 babies, and that defect will often impact the entire family. Parents of babies with birth defects are uniquely affected because they face the challenge of helping their child meet their full potential in a world that is challenging for everyone.

With every challenge of caring for a child who was born with a defect, there is also an amazing lesson that teaches parents about love and life. These lessons include those of hope, strength, courage, and learning to love through the pain.

Here are five life lessons that only the parents of children born with birth defects can understand.

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How to Be Fearless

Fear is something that we learn over time. We learn to fear rejection, the future, and the dark. But, mostly, we are afraid of the unknown. But, having a child with a birth defect can help relieve those fears because you quickly learn that there is no time to waste in being afraid. The time you miss out on because of fear is time you could have spent loving.

How to Participate in Advocacy

The moment you realize that your child has a birth defect is likely one of the most difficult moments of your life. It is a moment that you would not wish on anyone else, and it is not until this moment that you are able to truly understand what it means to be an advocate.

Your child gives you a voice and the drive to stand up for others in ways you never realized you could.

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When you have a child with a disability, you are not just an advocate for your child and your family. You have the unique opportunity to stand up for other families in your community and around the world. This was especially true for my partner and me; our child had been injured through medical negligence at birth.

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    You can quickly find yourself speaking to doctors and lawyers, not just on behalf of yourself, but also on other families who have gone through a similar experience. Brain injuries during birth are common and many parents with disabled children are at a loss on how something like that could have happened.

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    This position is a heavy one because you know that your abilities in preventing the sadness others may feel are limited. But, you know every moment that you breathe life into your cause, you might someday help relieve the pain of another family.

    How to Dream Big

    So many people choose to limit themselves over the smallest of things. But, when you parent a child with a disability, you learn that even the big things do not need to stand in your way. The way that all children are able to reach for the stars is aspirational to parents. Because if your child, who was hindered so early in life, is able to dream big, why can’t you?

    How to Believe in Yourself

    Disabled children believe they can always work harder, do more, and be better versions of themselves. From the very beginning of life, they strive hard to overcome the obstacles that they never asked for or created for themselves.

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    Watching your child perform small miracles every day inspires you to believe in yourself, both as a parent and as a person with so much to give to the world.

    How to Transform Lives with Love

    Love is the one thing that makes everything feel alright, even if only for a moment, and love was what helped you get through every difficult moment of those first weeks of parenting.

    A child helps you learn to love unconditionally, and ask nothing in return. The ability of your child to love you so much despite everything can transform your entire life in ways you never imagined.

    All children are precious miracles with much to teach us. But, there are some lessons that only parents who have had the joy and heartbreak of raising a child with birth defects will truly understand.

    Featured photo credit: Stephen Hockhaus via flickr.com

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    Published on April 3, 2020

    How to Strengthen Family Bonds When You’re Staying at Home

    How to Strengthen Family Bonds When You’re Staying at Home

    Now is a perfect time to work on making some memories with your closest family members. When situations call for social distancing outside of our home, we need to do the opposite within home.

    Now, more than ever, we need to engage with those living in our home. We may be together for a while, but look at it is way, it is a wonderful opportunity to create some good family memories and positive interactions together.

    Staying home can be isolating, especially when we hole ourselves up in different rooms than our other family members. Make an effort to spend quality time together. Sitting in the same room on different electronic devices is not quality family time. Put down the elections, join together in one room, and do activities together.

    Your family bonding becomes stronger when you spend time doing activities together. Below are 10 ideas you can do with your family and loved ones.

    1. Create Photo Albums

    If you are like most of the population, you probably have lots of photos and very few physical albums. My parents generation always had photo albums. I can go to my parents’ home in Florida and find at least 20 albums from the lives of my parents and my childhood that I can flip through and reminisce. Physical, tangible photo albums are always cherished.

    Look back at the past five years of your life. Were there meaningful trips that you took as a family or major life events such as a Baptism, marriage, or birth of a child that happened in the past few years? Do you have photos of the event stored somewhere digitally such as social media, on your phone, or on a computer? If you do and you want to savor those memories for years to come, then you may want to think about creating some photo albums.

    This is a great activity for family of all ages. You can approach the project in one of several ways. You can print the photos and put them in your own physical photo album (the kind our parents used and you can still buy), you can scrapbook, or you can create an online photo album.

    Whichever choice you make, the family can be involved in the process. I like the tangible photos and traditional albums or basic (no frills) scrap-booking, as do my kids. We have albums in all three formats. Whichever method you decide to do you can involve the whole family in the creation process.

    Scrap booking as a family can be fun too. It does not have to be over the top either. We do it with scrap booking paper (12 by 12 inches), photos, and bits of paper to write captions for the photos. The family uses photo safe glue to secure the photos to paper that each person selected and then we slide the pages into the clear page holders of the album. Albums are easy to create using this method and this method still allows for personalization of each page.

      To do a photo album project, I simply print out the photos that I want to use for the album. Many albums will ship printed photos directly to your home. For example, we did a National Park trip this past summer and visited seven of them in the United States over a three-week span.

      I printed all of the photos from the trip that I thought we could use for the album. Then I cut strips of colored paper. I use these strips to write a sentence of two. I usually put a strip with details on each page, but not every photo because that becomes more tedious.

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      Having everyone select and do a page or two and write the details about what the photos they selected makes it even more meaningful. For example, my son Charlie writing “This is Glacier National Park where we camped and Max got bit by gobs of ants at the dog run and we had to find a vet to help him” makes it memorable. His handwriting and the thing that captured his memory about that particular day are special. It adds his touch to the memories from the trip. Having every family member participate in putting the photos into the book and writing a few sentences for the photos that they are putting into the book helps to make it a shared family experience.

      It is also a wonderful time for revisiting the occasion that you are creating the album about. For example, doing an album as a family for a trip you all took together provides us with plenty to talk about as we go through the photos. My kids always get excited and say “look mom, remember when….” about a hundred times anytime we do an album together. The photo album activity is a bonding activity, as is the reminiscing over special time you spent together in the past.

      2. Indoor Camping with Sheet Forts

      What kid doesn’t love a good sheet fort? Sheet forts are the kind of memories that make a childhood great. If your kids don’t have any sheet fort memories, then now is the time to start making them!

      All you need are some sheets. The bigger, the better. Flat and fitted work just fine. Fitted sheets can be helpful to secure under legs of tables since they have elastic corners and are gathered. We like to use tables, chairs, and sometimes couch cushions too. You create a space using the furniture and then cover the furniture with sheets. You are essentially making indoor tents.

      My kids like to play inside their forts for hours once they are created. I help with the creation, to ensure that things don’t fall over and hurt anyone, but once that is done, I let them play. They will take books, little action figures, and their stuffed animals into their fort to play. Feel free to climb into their fort with them too! They will think you are the best parent ever!

        3. Bake or Cook Together

        Staying at home is a great opportunity to cook or bake together as a family. If you have special recipes that you would like to teach your children, now is a great time to do that.

        If you have grandma’s apple pie recipe that has been passed down for generations, it would be a nice time to make it with your children. You can use the time to talk about your grandparents, the heritage of your family, and perhaps the meaning of the recipe to you.

        After you make the special dessert or dish with your children, it will then have special meaning to them too. They will be able to recall the time that they made that special concoction with you and the memories you made from that day.

        Here’re also some ideas for you: 15 Easy Recipes for Kids That Don’t Require an Oven

        4. Play Board Games Together

        I come from a family that plays games together. Even as adults, we love to play Boggle, Scrabble, Rummikub, and a variety of card games.

        My kids have caught the game bug too. When we go camping or are home over the weekend, we will play Uno, Connect Four, Dominoes, and Memory. These board and card games are inexpensive and provide hours of entertainment. It is also a great way to bond as a family and create memories.

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        Some of my favorite memories from childhood are sitting at the kitchen table playing games with my siblings and parents.

        For very young children, you can start with games like Candy Land and Chutes and Ladders. From there, you can move onto slightly more challenging games for their minds such as Uno, Monopoly Junior, Memory, War (basic card game), and Connect Four.

        My kids started playing Candy Land at the ages of three and four. From there, they have been hooked on family game time ever since. They ask often to play together and now is a great time to teach them to play even more games. The entertainment, laughs, and memories are priceless!

        5. Put on a Show or Play

        Family talent shows, putting on a play, and putting on a musical show do not require an audience. Your family can do the show and record on your phone or other electronic device. It doesn’t need an audience other than you all to make it memorable. It is the experience of collaborating, planning, and executing the show together that make it special.

        My kids began making their own hat creations out of our various art supplies. I have been helping them in the process. We have art class daily as part of our new home school curriculum (I am one of those moms who never wanted to home school, yet I am doing it because our schools are closed indefinitely).

        Art class daily has become hat making time. Once they have made enough hats for a fashion show, I said we would put on a show and record it. It has spurred on their motivation to create elaborate works of art. They are excited about each hat and the show that is to come to fruition.

        You can find free plays and scripts on Free Drama. You can act them out as a family and record just for fun. You can also use a script from the website to create a puppet show. Each family member can then play multiple roles and it opens the door to more characters.

        If you don’t have puppets, then make some! You probably have a basket of mismatched socks like we do. It is a great way to use them at this point. Go to Pinterest for ideas on how to make sock puppets. Creating the puppets together is also a great bonding activity. Once you have your characters made, then you can act it out.

        Don’t forget to video it, because I can guarantee that your kids are going to be interested in seeing their own performance. Such a great way to make family memories and it doesn’t cost much, if anything at all!

        6. Reading Aloud

        Reading a book aloud is a great way to create some bonding time and memories. It is a much better alternative than everyone isolating themselves doing their own activities. Being pulled into the same imaginative world through a book creates a shared experiences.

        I remember reading The Old Man and the Sea to my mom when we were on a car trip when I was a kid. I recall talking about the premise of the book and our opinions about it. It obviously left an impression on me, as I remember this over 25 years later.

        I have read aloud books to my kids too. The first chapter book we read aloud together was Charlotte’s Web. After we read the book together, we then watched the movie. It is sweet how my kids will still point on the book or movie if we see it somewhere in public. They will say “remember when we read the book together and watched the movie?” They say it with such sweetness and innocent pleasure, it is a good reminder that the simple things in life are sometimes the best.

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        Some other good books that we have read aloud together that my kids personally enjoyed were The Lion, the Witch, and the Wardrobe, The Secret Garden, and Little Women. I know several friends that have read the Harry Potter series with their children who are slightly older than my six and eight year old children.

        Medium shares a list of 20 great books to read aloud with your kids. Their list is helpful because it has descriptions along with recommended ages for each book.

        If you can’t get out of the house to go to the library, you should look into the digital software that your library utilizes. Visit your local library’s website to find out what apps you will need for you to borrow from their digital library.

        Our library offers a multitude of free e-book downloads. You borrow the materials much like you would a physical book. Usually, the downloads can be kept for 2-3 weeks at a time, depending on your library rules. They also have audible books available for download from many libraries as well. For example, our local library subscribes to Cloud Library. To use it, I simply downloaded the app and entered my library card information requested from the app. I was instantly given access to thousands of audible books free!

        7. Plant a Garden

        This tip only applies if you have a yard, however there are options for creating patio gardens and indoor gardens too. Planting a garden and teaching your child how to tend to vegetables is a wonderful bonding opportunity. You are teaching them real life skills, you will have real food to eat from your own garden, and you are creating memories that will last a lifetime.

        If you ask a person if they had a garden when they were a kid, everyone knows the answer. It is not something you have to think to hard about. Why? Because gardening is an experience. Why not experience it with your family too?

        If you don’t know much about gardening, then you can learn with your child as you go through the process. Here is an article from Bonnie Plants on how to plant a garden.

        If you don’t want to leave your home, then you can order gardening supplies online like I did. Lowe’s dropped off our raised garden bed kit on my doorstep and I ordered a variety of seeds from Amazon. Just look online at the garden stores that are closest to you and see what they ship to doorstep if you don’t want to leave the house.

        8. Host Your Own Family Party

        Just because you are home and can’t have a big party with lots of friends doesn’t mean you can’t still have a party. A party with your family is fun if you decide to make it fun.

        Pick a theme to really make it an event. An 80’s themed dance party is sure to get the whole family laughing and smiling. Pull out your best 80’s looking clothing, rat your hair to get that special 80’s look, put on some 1980’s tunes, and teach your kids some dance moves from the 80’s.

        Having a dance party doesn’t require many people. A party of two is still a party! Make some memories and perhaps show your kids what things were like when you were a kid. They will certainly remember an 80’s themed dance party for many years to come.

        Weekends spent at home don’t mean that they can’t be fun. Make the weekend special even if you have to be home. For example, Friday can be family movie night or family game night. Then Saturday night can be your 80’s dance party. Let your creativity go to work and if you need a few ideas check out this blog article that has 32 Party Theme Ideas .

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        9. Learn an Instrument Together

        No time better than the present to start learning to play that instrument you have always wanted to play.

        Have you always wanted to play the guitar? Then, look online for a basic learning guitar that isn’t expensive, yet has good reviews. We did that for my daughter and purchased a decent quality ukulele from Amazon that was intended for beginners while still having a quality sound (it wasn’t some trinket from a tourist destination that wouldn’t hold a tune.)

        We found lessons online from an instructor who would conduct lessons one on one using Skype. Many instructors use this technology or other free software that allows quality video communications from their home to yours.

        The website we happened to use to find an instructor was TakeLessons.com. You can find instructors that will teach anything from drums to cello to saxophone. Prices vary too. You pick your instructor from their pool of instructors available. This website is basically a service that connects people with talent (some with really good music education too) who can teach to students who are looking to learn.

        Learning to play an instrument together and you are creating memories together! You are also learning a new skill that you can enjoy for years to come. Playing music together is good for the mind and soul!

        The TakeLessons.com website also has language lessons. You can learn a new language as a family. All from the comfort of your own home. I am sure there are many different website that offer lessons on learning another language. Do your research and compare prices before committing to anything.

        10. Plan Future Travels

        While you are learning a new language you can begin planning future vacations. You can do a family meeting and discuss where you would like to go and why.

        It would be even better to have each child research where they would like to take a trip. Each child and/or family member can present a pitch on why your family should travel to that location in the future. They can use their research to tell about the area such as its historical value, recreational features, and the learning experiences that can be had from such travels.

        This doesn’t mean you need to book any travels. It more about learning and finding hope in the future. If we can’t plan for the future, then there is no hope. Make mental plans now, as a family, for what you want to do and where you want to travel someday.

        Make Memories Today!

        There is no time better than the present to start making memories together and bonding as a family. In these times when many people are having to stay home for extended periods of time, it is a great opportunity to bond and connect as a family.

        You have a captive audience with your children at home. Don’t miss out on this time by holing up in separate rooms doing your own activities. Make it a point to chose group activities and engage your family during this time at home.

        Every day alive is a blessing. Every day having your family is blessing. Don’t take your blessings for granted. Love on them and create great memories in spite of the circumstances.

        Featured photo credit: Marisa Howenstine via unsplash.com

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