I didn’t get to be a “normal” mom, not even from the start. As soon as our oldest was born with a (minor) birth defect and spent 6 days in the NICU and then came home with projectile vomiting, severe allergies, asthma, and immune deficiencies; I wasn’t just a “new mom”, I was a “special needs mom”.
Add in my second child, and now our youngest child, with severe medical-special needs and you get a mother (and a family) dealing with things most moms never deal with. But, to me… it’s just being a mom because it is all I know.
Here are 5 things you should know about a special needs mom:
1. Most “normal moms” do not understand me or our parenting choices. They simply can not, because they have never been a mother to my kids with their unique special needs. Thankfully, I have sisters who have been there from the start, learned alongside us, and were willing to take notes about how to do everything with my special kiddos and respect all of our choices for their health and life. Because of them, we can get a break from the kids when needed. Blessing: learning to appreciate the sacrifices others have made for us and how God has provided for us.
2. I may be labeled as the “over-protective mom” because I care about every single thing that goes into my kids’ mouths (and eyes, mind, heart, and… okay, those last few things shouldn’t be reserved just for special needs moms). Because of asthma and food allergies, I have had to care very deeply about our food choices for years. Dairy and peanuts are an absolute no-no for some of my kids because their life depends on it and they could die… and only a small amount of sugar and white carbs are ever in our home, because… their life depends on it to stay healthy (I believe in eating healthy to be healthy). Our daughter has a mitochondrial disease, so why would we eat things that are toxic to our mitochondria? This doesn’t mean my kids are deprived! They get lots of homemade bread & desserts/sweets, delicious fats (coconut oil is SO good for you!), protein, etc. They even get store-bought special treats of stevia-sweetened sodas and coconut cream frozen desserts! Blessing: we have learned as a family to think about what we put into our bodies and to care for our bodies (our bodies are the temple of God) and have learned moderation (a fruit of the Spirit and useful in every area of life!).
Special Needs Mom Life Encouragement
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3. I have developed the habit of researching and learning all I can about things, because of the medical world I have been thrown into. I actually read medical journals online and can understand most of their terminology by now, out of necessity. I am the one that diagnosed my children before any doctor because I am their mother and nobody loves my kids like I do and nobody would put in the time and energy it would take to diagnose them! I’m guessing any other mother would do the same when faced with the exact same situations! But, this often means, I am in this medical world alone, especially in real life … Not asking for pity, just understanding. I don’t have your life, you don’t have mine. Let’s respect each other. Pretty please?? Blessing: We have learned much more about our own health and can relate to others going through a medical crisis.
4. We live around a strict schedule of several medications, feeding times, and nap/bedtimes… this mostly applies to our medically fragile children, but when you have several small children (and you homeschool, too!), you must manage time wisely. You may not understand our need to be back home at a certain time, or the need for our kids to be in bed at a set time, or our need to skip events completely. My daughter could literally die from missed meds or not enough sleep. Her life depends on my managing & scheduling skills. This is something I’ve had to learn since our oldest was born requiring around the clock nebulizer treatments and allergy meds. Blessing: a bedtime for the kids means healthier kids and much-needed mom & dad time in the evening. We ALL win.
5. We have been forced to, and have chosen to, give up a lot of “things” most people take for granted or think are necessary. We have physically disabled children and we can only go to handicap assessable places. Our children have weak immune systems. Our kids have life-threatening food allergies. Avoiding family gatherings and populated areas the last few years has kept our family healthier. Blessing: We have learned to enjoy a simpler, quieter life. We have grown closer as a family and closer to God because of it, too!
You may not understand how we (me and the kids) can stay home all day, every day through the week… and actually not get bored! But, believe it or not, we stay very busy just living and embracing a special needs life! We have fun while we learn, do school, Bible study, cleaning, cooking, playing, exploring in safe-for-us-ways, and playing some more.
Maybe it is because our daughter has a terminal disease, or because I lost a child 88-minutes after he was born, or perhaps it is because I lost my own mother to cancer when I was 21… but I consider every second I get with my kids a privilege! I think any good mom feels the same way (I hope so, anyway, because it shouldn’t have to take losing a child to convince them of the importance of their job as moms).
My kids are not deprived because of our lifestyle. They don’t need to be out in the world to know that sin exists (or to have fun)… we find enough sin in our own home… where it is met with grace and Biblical truths (and we have tons of fun, too!).
They are being taught about sacrifice, compassion, love, and most importantly the God of the Bible. So, don’t feel bad for my kids because they have a handicap sister and are mostly “housebound”… instead be thankful along with us that they get the opportunity to see & learn real faith, hope, and love because of Abigail.
At the end of the day, I am not any different than any other mother. I want what every Christian mother wants for her children: Jesus Christ.
We only get our kids for a short while and then they are off on their own as adults, making their own choices. We must take seriously what God has called us to do in the bringing up and training of our children to be followers of Jesus Christ!
I don’t want my kids to think they were deprived or feel sorry for themselves because they didn’t have all the world had to offer them, I want them to always put God first and turn to His Word for guidance… no matter what they may face in life.
Obviously, I don’t expect them to turn out perfect… nobody is. Of course, we will make mistakes as parents… everyone does. And, We may not have a “normal” life, but it’s the only life we know.
Are you a special needs mom? Can you relate? What would you add to this list? Please share in the comments!