Motherhood is by far one of the most precious accomplishments and greatest feelings in this entire world. We get the honor of holding our beautiful babies, watching them grow over the years into their own individual people, and from birth we get to spend every day loving the little ones who are unique reflections of us. There is no greater feeling! While we all have our share of elated ups and at times challenging downs, motherhood is something to be thankful for and truly proud of. After all, you were called to fill these footsteps and take on a role that only you were meant to fulfill.
On the opposite end of the spectrum and outside of the joys that motherhood brings, it’s fair to say that mamahood definitely has its moments when life can get overwhelming and downright tough. And it’s even harder when you’re a special needs mama managing more than the average traditional needs related to caring for a child. In my case, being the mother of a special needs child is both an honor as well as a unique challenge. Yes, it’s ultimately grown me up and subsequently taught me to be my best me. It’s even inspired me to find my true purpose in life and structure my brands around it, which I will always be ever so grateful for. However, in my day-to-day reality I am dealing with what seems like a never-ending set of struggles and am also managing them alone as a single mother. Let’s not forget that motherhood is a full-time, never ending role anyway. However, I think it’s safe to say that it’s even harder when you’re taking care of a little one that requires a lot more additional needs.
Check out some of the ups and downs that special needs mamas like me go through:
Always Grateful for the Ups and Mile Highs:
We special needs mamas get so happy to see our children meet their milestones! (It’s huge for us!) Oh do I remember the first time when my son Noah first started to rock back and forth on his hands and knees and get into crawling position. It may have taken him a little longer to finally crawl, but boy when he finally did I was so happy and overjoyed to see him meet this milestone. Then after several years later he finally learned how to walk. This was a big testimony for us because due to Noah having a host of high and low muscle tone issues and so much tightness in his ankles, hamstrings and feet, we didn’t think that Noah would ever learn how to walk or at least without support. But today, my baby is running! Yes, ya’ll running! Noah is also continuing to meet other milestones like laughing, babbling, dancing, helping out with light tasks and chores around the house, walking up and down stairs, and just overall being a big boy that’s developing more and more each day! And the good news is, I can hardly keep up with him these days! He’s on the M-O-V-E! When I get to watch Noah grow and mature into a busy little toddler, it makes me so happy and I feel like I’m doing something right as a mom.
Balancing the Downs and Finding My Way through the Struggle
One of the biggest issues that I’m facing and have been facing since Noah was born is the fact that my son doesn’t eat by mouth. When we go to birthday parties and all of the other kids are eating pizza, enjoying birthday cake, drinking out of their cute little juice boxes, and sitting around their adorable little tables enjoying a meal or having snack time together, my little guy is bound to a syringe and receiving a g-tube feeding of a blended, whole food vegan formula while the other children are all eating the traditional way. When we’re at family-friendly events or even just out and about, and he’s offered candy and snacks, I have to politely turn them down and explain that although we would love to have them and appreciate their kindness, Noah is a special little guy that just doesn’t eat by mouth at the moment. As some of you guys may know, Noah was born with a cleft palate which is an opening in the roof of his mouth. He was also born with a severe breathing issue and encountered a great deal of challenges with sucking, swallowing and breathing simultaneously. Although, Noah has had cleft palate surgery to repair his cleft palate, as well as a mandibular distraction surgery to help combat his breathing challenges, Noah still has issues with his mouth and likes to avoid eating by mouth whenever possible. In fact, he’s usually fighting me away whenever I try to feed him or brush his teeth. I was also told that Noah has something called oral aversion which is reluctance, avoidance or fear of eating, drinking, or accepting sensation in or around the mouth. Feeding has been an ongoing issue for us for years and with the way that things have been going regarding Noah and his reluctance and interest in eating by mouth and teeth brushing, I honestly can’t say that I see him having an interest in food anytime soon. But…we are still going to keep working at it and trying our best until he’s more comfortable and ready to eat by mouth.
Another challenge that can be very emotional for me at times is the fact that my baby can’t quite do what everyone else’s baby can do. Noah will be 4 years old this December and still has never said “Mama” or actually verbally spoken to me. I am patiently waiting for him to say “Mama” one day. Noah is also not potty-trained just yet. He’s wearing diapers. Of course we have a potty chair at home, but because Noah is not able to verbalize with me that it’s time to go to the bathroom, it’s much more challenging to get him potty trained. When we’re at children’s events and it’s time to participate in activities like bag racing and hopscotch, I at times dread it because I know that some of these activities are things that Noah is not quite able to do just yet due to his balance and coordination. But nonetheless, we always give it a shot anyway. One of the biggest things that I encounter as a special needs mom is the feeling that you and your child are always being watched by other people. Imagine if we lived in a world where being unique was the new normal. To be honest, sometimes it feels like Noah and I are the exception to the rule and trying to blend in to feel a sense of normalcy in a world where we don’t always quite fit in. And that hurts. We recently went to a Halloween Party this past Sunday and although we had a great time and Noah visibly enjoyed himself, I could tell that other children were becoming annoyed with him because at times he can play a little rougher than normal and is still grasping the concept of sharing and doing things in a certain manner. For instance, while we were at the party, he was walking up to other children and grabbing them and then taking toys away from them because he wanted to play with them. Of course he doesn’t mean any harm by this at all, it’s just his way of being social and engaging with his peers. Noah is also non-verbal at the moment, so he can’t communicate what he wants with others without just going for it, grabbing for it, or taking it away. (Which is one of the things that I’m working on at home with Noah).
Because of Noah’s syndrome and the host of issues that come along with it, Noah tends to vomit often. We will literally be driving in our SUV and he’ll just profusely vomit out of nowhere during our trip. Then I’ll have to pull over to stop and clean up vomit off of him and from my car. This also happens quite a bit in public too. I remember taking Noah to a pumpkin patch a few years ago and he randomly vomited in front a large crowd at the front of the entrance and everyone around us just stopped and stared. He literally threw up and choked on his vomit for about 5 minutes while passersby just stood there watching us (At the time I wondered what they were thinking). Not one single person offered to help us, get a paper towel, get help, or even say “Hey are you guys ok?” Nope, not one. But that’s the life of being a special needs mom. When you’re in the role of a special needs parent you learn really quickly that people don’t always know what to say or how to respond to you or your situation. At times it’s awkward for them to approach you because this sort of thing is usually new for them and they have no idea of what to do. More often than none, when people don’t understand something or don’t know what to do, they’ll just stand there and watch because that’s what they’re accustomed to. This isn’t something that I necessarily get upset about, but I have to admit that it would be nice to see more people offer support and lend a helping hand versus standing there and watching my son and I struggle. But what can you do right?
Another emotional feeling that I experience as a special needs mom is the constant worry about Noah’s life long term. Each day I think to myself, what’s going to happen to Noah if I’m no longer here one day. Who will take care of him? Where will he live? Will he be able to live on his own? In the future will he be independent or co-dependent? Will there by anyone else around that loves Noah nearly as much as I do and want the best for him? Will he ever have a first date, go to his high-school prom, or have a first love? Will he get married and have children of his own one day? Because I’m Noah’s sole provider I’m always thinking about these things and wondering about the what-ifs and many possibilities. And then my stress sets in because I am forced to remember that sometimes there is only so much that I can do and only so much that I have direct control over. That feeling of knowing that I won’t be here forever to protect Noah is the scariest feeling in the world. But ultimately, I just hope that Noah is able to live a happy and healthy life that’s both content and fulfilling.
For those of you who are experiencing anything close to what I go through with Noah on a daily basis, you already know the feeling of what it’s like to be a special needs mom. And for those of you who haven’t been in my footsteps, you can probably imagine what some of this feels like. Just like any other mom I have my good days and bad days, but most importantly the honor that I feel being Noah’s mom outweighs any of the emotional stress that comes along with my unique journey through Mommyhood. As I always say, although our life isn’t perfect, it’s the perfect story that was chosen for us and together Noah and I will continue working to inspire other families just like ours! What are some of the challenges that you’ve experienced as a special needs mom? (Leave comments and feedback below).