29 Dec

Meet Miggy | A Glimpse into Motherhood

Meet Miggy, Amy Webb, a mother of three whose second daughter, “Lamp,” was born with Microgastria and Limb Reduction Complex. We are so honored to share a glimpse into this families story + Lamp’s journey with special needs. Amy tells her touching + inspiring story below.

LittlePeanutMagazine_AmyWebb_1TELL US A BIT ABOUT YOU?

Hi! I’m Miggy. I’m a wife, mother, blogger, artist, and special needs advocate. My husband and I have been married 10 years and are lucky enough to be the parents of 3 beautiful girls. In our married life we’ve lived in New York City, San Antonio, TX and currently (and most likely, permanently) in the lovely city of Cincinnati, OH. Each one of our girls was born in a different location–which is great because they double as our kids and our favorite souvenirs. Also, since we are no longer moving I think this means we are done having kids. Our girls are each amazing individuals and a fantastic trio of sisters at the same time–honestly, I feel like I won the mom jackpot. Our eldest daughter, blog named PSP, is a remarkable first child. Smart, thoughtful, loving and fortunately resilient as we’ve no doubt made and will continue to make our worst parental judgement calls on her. Our middle daughter, blog named Lamp, was born with a condition called microgastria and limb reduction complex. In short, she was born with a small stomach and with limb differences on all four limbs. Shortly after birth we also discovered she was born with extra awesome. (Fist bump.) She is precocious, outgoing and wise beyond her years. And our youngest daughter, blog named Zuzu, is the perfect combination of delightful and infuriating, often at the same time. She is the ideal caboose for our little clan. I’ve been blogging about our family, the ups and downs of limb differences, art, DIY’s and everything inbetween on my blog This Little Miggy Stayed Home, since 2005. Four years ago I also started a series on my blog called the Special Needs Spotlight where I interview other families on their special needs journey. No doubt this feature has become the heart of my blog and has personally been a life changing experience for me.

LittlePeanutMagazine_AmyWebb_2PLEASE TELL US A BIT ABOUT MICROGASTRIA AND LIMB REDUCTION COMPLEX FOR THOSE WHO AREN’T FAMILIAR WITH IT.

Microgastria and limb reduction complex is just one of many conditions that can cause a person to be born with limb differences. As you may have guessed, limb differences refers to someone whose limbs are different, affecting anywhere from 1 to all 4 limbs. For Lamp specifically, the microgastria portion of her diagnosis means that she was born with a small stomach and therefore had a g-tube (feeding tube) from the age of 6 months to 18 months old. Thankfully she has grown out of the stomach issues and no longer requires a feeding tube. As far as her limb differences go, she is affected on all 4 limbs. Both of her arms are shorter than average, with her left being shorter than her right arm. She has no hand on her left arm, and has a small hand consisting of 3 fingers fused together on her right arm. Her legs are also both shorter than average, and differing lengths, with 2 feet and 9 toes. And yay! for those amazing toes because they enable her to do a lot of her fine motor skills including writing and drawing, grabbing, turning pages, etc. While she can’t yet walk independently she is quite mobile–she scoots around, she can walk with holding onto things, but mostly she is a fantastic little powerchair driver who zips around our house, yard and school all day with her two different chairs. With the help of her chair, an adaptive fork and spoon set her dad made for her, she is able to do almost everything other typical, able-bodied children do. Don’t get me wrong, she definitely has limitations, but I think of her as differently-abled more than I do disabled.

LittlePeanutMagazine_AmyWebb_3TELL US ABOUT THE MOMENT YOU FOUND OUT LAMP WOULD HAVE SPECIAL NEEDS + YOUR FEELINGS?

I remember that day well and when I replay it in my mind it’s like watching a movie. I see our family of three–my husband, our oldest daughter and myself–meeting in the parking lot of my OB’s office on a sunny Friday afternoon, so giddy with excitement as we all go in together for the big gender-revealing 18-week ultrasound. In my mind, my husband and I are all smiles, holding our daughter’s hand and swinging her in the air as we bounce into the doctor’s office with the sun shining all around. One thing that stands out is that since we were leaving on vacation in a couple of days I had a few errands to run, and immediately after the appointment I was going to take PSP to my friend’s house so she could watch her for a couple hours while I ran said errands. Now this friend had recently been pregnant and had gone through their own terrible ordeal where they ended up losing a precious baby girl just about 2 months before. And in fact we had the same OB. So as I was on the phone with her in the parking lot finalizing plans, I remember getting off the phone and saying “Wish us luck!” and I immediately wanted to kick myself. Obviously I didn’t mean to be insensitive, but I felt horrible. In hindsight, the sunshine, the smiles and this conversation all seem like an obvious theatrical foreshadowing for what was about to happen.  

During the actual ultrasound I tell the technician that I’ve been a little worried because I haven’t felt the baby move that much. She immediately tells me that my placenta is on the tummy side of my uterus and therefore I probably can’t feel the baby that well. She then says, “There’s the heartbeat–it looks great!” And I relax. Everything is going to be fine. My husband, my daughter and I are all chatty while the tech is rather quiet, but I don’t really notice until later. When it comes to telling us the gender she says in very anti-climatic, almost stoic tone, “I think it’s a girl…I can’t get a good look but I think it’s a girl…”  And I’m like, really? That’s how you tell us this exciting news? But at the same time I was too excited to notice. I really, really wanted another girl. The tech kept working, being super quiet and then she suddenly gets up. Stunned I said, “Is that it?” She quickly says, “I’ll be right back.” And walks out. My husband and I look at each other and immediately our hearts drop.  He then says, “I feel like I didn’t see an arm on the baby…”

What? What are you talking about? I couldn’t even process what he was saying or that it might possibly be about this baby I’m carrying. That sentence had no relevance in my world and whatever he thought he saw or didn’t see was clearly just wrong. And for a split second I imagined that I might have a kid without an arm and again I couldn’t even process the idea. This seemed like the most crazy suggestion I had ever heard in my life.

Then the Dr. walked in. When I asked him if everything was OK, he said, “No.”  And I will never forget the following sentence:  “While your baby’s head, heart, lungs, spine and kidneys look fine, it’s the limbs.  All of them… are deformed, misshapen or missing bones altogether.”

BOOM. Just like that our lives were forever changed.

The doctor kept talking and using terms like “skeletal dysplasia” and “dwarfism.” The words were pouring out of his mouth so quickly like water over my head that I was struggling to breath, drowning in what he was saying. When I finally opened my mouth to ask a question I got about halfway through before I burst into tears, buried my head in my hands and sobbed. I think that’s the only time in my life I have legitimately done that. We left the office with no answers. This completely unknown condition was either “incompatible with life,” or if she did live, our baby was clearly going to have a host of issues all of which would remain unknown for an indefinite amount of time.

LittlePeanutMagazine_AmyWebb_4TELL US ABOUT WHAT LIFE HAS BEEN OVER THE PAST COUPLE YEARS RAISING LAMP AND YOUR OTHER DAUGHTERS.

In a word, they’ve been amazing. Our three girls are a gift, individually and collectively. I couldn’t imagine our life without all 3 of these little rascals. Sure some years have been tougher than others, you know cuz LIFE, but definitely brighter than we could have ever imagined after that first ultrasound.

When Lamp was a baby there were difficulties with her g-tube and of course her limited mobility. However, as a baby we didn’t worry too much about the social aspect because she didn’t yet understand what people were saying. She was so good natured and was blessed with this otherworldly patience. I really assumed that she would get super frustrated when she realized she couldn’t grab toys, crawl/walk or do things she saw her big sister doing. A lot of babies and toddlers get frustrated by not being able to do things they see other kids doing or even just frustrated for lacking the coordination to do something…so I assumed this was something we would deal with. I was wrong. She was so content and really just patient with herself and us. That was a gift.

As she grew into toddlerhood she astounded people with her sharp vocal skills—she started speaking in small yet full sentences by 15 months old. During this time she was also doing therapy 3 times a week which helped immensely. However, she was also figuring out many things on her own and I was realizing that I had really underestimated what she was capable of. See, often when a person is missing their arms or hands, their legs and feet become their arms and hands instead. Well I thought that since her legs were shorter than typical legs that they wouldn’t be much help to her—wrong. She started grabbing things with her feet—again this was on her own, not driven by therapy—and then she started to be able to feed herself with her feet. Finally, it was during a chance meeting with another limb different girl who has differences very similar to Lamp, but who is a few years older, as I watched them pass markers back and forth between their feet, drawing little pictures for each other, it was then that I realized her feet were going to be a big part in who she is and how she uses her body.

Another big deal was when Lamp started to learn to drive her power chair and the day we finally brought it home. She started driving a chair at therapy when she was about 16 months old and we didn’t bring it home for many, many months after that—maybe 9 or 10? It took me a while to admit that I was really hesitant to bring her chair home. Her therapist kept telling me, “She’s ready. You can take the chair home anytime.” And I kept pushing back—“Oh I don’t know how to operate it very well, oh we need to get a lift for our car first, oh we need to do this…” sure there were some practical things to figure out, but mostly I was resistant for the change that came with having a power chair. Having her in a stroller definitely provided a somewhat inconspicuous cocoon of safety. Having a 2 year old, with limb differences, driving a power chair around was like putting a giant spotlight on her everywhere she goes. Blending in was no longer an option. BUT it also gave her freedom and of course we were really excited to see her patience finally being rewarded with mobility.

Now Lamp is 5. She has a second power chair (custom made from a local non-profit), just started kindergarten, loves her friends and is actually a cheerleader for our local school district. Our main concerns with Lamp boil down to social acceptance. We were lucky to have a special presentation given to her entire school talking about her differences and highlighting some of the tools she uses on a daily basis to help educate the kids around her. But it’s strange to have “send pictures for Lamp powerpoint” on your back to school to do list…I will always feel this odd dichotomy between the completely normal life of our family leads and at the same time the very unique life of our family. But I really think there is something universal about that “my life is so normal/my life is so strange!” thing. I think everyone feels that in one way or another.

LittlePeanutMagazine_AmyWebb_5WHAT DO YOU GUYS ENJOY DOING AS A FAMILY?

We love doing so many things. We love riding bikes, going on walks, hiking, having family movie nights, playing games, cleaning the house (oh wait…that’s just me), exploring our city and traveling to new places as well. We love having family music time (everyone grab an instrument and go!) and having spontaneous dance parties. Now that my girls are getting a little older I’m really starting to treasure dinner time more than ever. It certainly doesn’t happen every day, but sitting around the dinner table talking, sharing about our day, asking questions…it’s  becoming one of my favorite parts of the day. Really, I think we love doing things that most families do.

LittlePeanutMagazine_AmyWebb_6WHAT BLESSING HAVE YOU (YOUR FAMILY) RECEIVED FROM HAVING A CHILD WITH SPECIAL NEEDS?

Many of the blessings of having a daughter with special needs are the same as having kids in general. The light and love she brings to our home, her silly sense of humor, the delight she sees in the ordinary and her precocious observations on the world around her. She’s sharp as a tack!

But the blessings that are specific to having a child with a disability are that I see the world, and more specifically the people in the world, with new eyes. I am much more aware, of the infinite worth of each individual person simply because they exist. Some people can’t move independently, they can’t walk or talk or do all of these things that we think make us human… but they are human. And they are priceless and worth so very much to their loved ones. In a way I always believed that, but it’s become so much more clear to me. And true. It’s just true. And a huge part of my understanding of this has been due to the special needs spotlight series I started on my blog. I would have never started that series if I hadn’t become a special needs mom myself. I went into it thinking, “Oh, I’m going to educate the world on our stories and what it’s like for us…” but after doing these interviews for 4 years I have come away completely humbled, realizing that I know nothing, that I’m still learning as much as anyone.

I also see so much more clearly than I ever did before the fact that every person on this planet has disabilities and that in one way or another we all live in an impossible situation where our reality seems to be completely at odds with what is being asked of us. Maybe your impossible is loving a family member who is completely unlovable, or living with a wound of some sort  that won’t heal, or fighting an addiction, or forgiving an unforgivable situation, or in the case of my daughter living without hands in a world that was made for and by people who have hands! All these things are impossible! And yet through the grace of God and the help of others, we do it.

Which leads me to another thing I’ve learned…none of us does it alone. We’re not supposed to. If you’re alive and reading this, it’s taken dozens and probably hundreds of people to get you to this place in your life. Isn’t that amazing?

LittlePeanutMagazine_AmyWebb_7ON THE FLIP SIDE, WHAT CHALLENGES HAVE YOU (DO YOU) FACE?

By far the biggest challenges Lamp faces, and us by proxy, have to do with social acceptance and awareness. Day to day Lamp really doesn’t have many physical challenges. She plays, eats, gets dressed, reads, writes, gets around the house, all these things, independently. There are definitely things she does need help with around the house, but  fewer than you might expect. She also has the necessary adaptive equipment to help her, especially her power chairs, so again the physical challenges are minimal. And socially she does very well overall. She has friends at school and church, she plays with the neighborhood kids, she is very outgoing and well liked by most everyone who knows her.

I liken being Lamp’s mom to having a celebrity for a child. In public, people stare a lot, especially when she’s in her power chair (which is most of the time). Fortunately most of the stares are kind—people smiling and often really amazed at what a good driver she is! (And she is really good—it is not as easy at it looks!)  The other thing is that people remember her and know who she is at stores and places we frequent. We often hear, “Oh she’s getting so big!” or “How’s my little friend doing?” And we have no idea who they are–ha! For the most part Lamp doesn’t even register the stares anymore. I know she’s aware of it, but she just keeps moving forward with her head held high. She has also learned that if someone is staring at her to smile and say, Hi! This is quite a charming and disarming tactic that works remarkably well–you actually see awkwardness and discomfort melt away and if someone wasn’t smiling before, they are now. For some reason I frequently get a little catch in my throat watching these scenes play out. I don’t know exactly how to articulate why this happens, but it’s this little feeling of pride and love as I watch my very vulnerable little girl handle ever so gracefully the charge that has been placed on those tiny little shoulders of being visibly different. I feel so much in these nano-second interactions…I wish I knew how to describe it better. I really do want to stress that most of our public interactions fall under the umbrella of kindness, curiosity and extra attention, which are all manageable.

That being said, we definitely have had our share of difficult or even just odd situations. For example the time a woman followed me, while holding Lamp, into a bathroom STALL–not just the bathroom, but the STALL YA’LL–to ask what was wrong with her while reaching out and grabbing her arm. (To be fair, I think the woman may have had intellectual disabilities herself but it was still super unnerving). Or the time we exited the plane last year while on vacation and everyone started clapping and waving to Lamp as she’s driving her powerchair off the plane. I had this weird motherly instinct to encourage Lamp to wave to everyone, you know to be ‘polite’ but then I was like, What is happening? Why are we doing this? Such an odd and funny moment! Meeting new people, especially young children in larger groups can be difficult. Kids will ask what happened and sometimes grab and touch her arms. In some of our worst case scenarios Lamp has literally been encircled by a group of kids (sometimes adults as well…sigh)–asking questions, pointing, staring, maybe using rude words like weird or creepy–and we find ourselves trying to be both protector and educator. Sometimes we have to actually shoo kids away so our daughter can just play. There is no way around it, those situations SUCK. And they are very hurtful. But they also propel me to continue advocating  through my blog and other social media. One of my most popular posts this past year was directed at helping your child navigate a special needs encounter. Most parents really are at a loss on how to best handle the situation. While it’s not an exact science, it’s a good general guideline you can read it here.

The other huge hurdle is pity. We don’t encounter it often but pity is a soul sucker. I just wrote a whole post about why it’s so problematic for people with disabilities, so forgive me but I’m just going to direct you to the post here.

LittlePeanutMagazine_AmyWebb_8WHAT ADVICE DO YOU HAVE TO OFFER OTHER MOTHERS OF CHILDREN WITH LIMB DIFFERENCES?

The good news is that a newborn with limb differences is no more or less helpless than any other newborn—in that respect you’re free to snuggle, love and enjoy your babe just like you would any other little one. (This is of course assuming there aren’t other complex medical issues…I will get to advice about that in a second). Next, and this will probably sound cheesy, be prepared to be amazed at everything your child will do and figure out on their own. Be open to your child doing things in their own unique way and make sure the doctors and therapists your child works with are also supportive of letting your child lead the way when it comes to therapy and doing things in a way that feels most comfortable for them.  

As your child grows remember that there is a HUGE range of how your child’s specific limb differences will affect them. I would say the two main challenges will be physical limitations/barriers and social acceptance. Hopefully your doctor is pointing you in the direction of a specialist—usually a pediatric orthopedic surgeon.  I would add that you want to find an orthopedic surgeon who really knows limb differences—this can be hard to find, but it’s worth it to look. There are a few big pediatric orthopedic hubs around the US (Dallas, Boston, and San Diego are the top 3 I believe), hopefully one is close enough to accommodate your family. (We see a doctor in Dallas and I’d be happy to share his info).

Reach out to other limb difference moms on line through groups like Lucky Fin Project or Amputee Coalition of America or (ahem) me. Googling will surely get you connected with another mom who has a child with similar limb differences or hopefully your hospital/orthopedic surgeon will also be able to connect you with a family who has dealt with similar issues. Also, I would suggest educating yourself about tools like prosthetics and other adaptive equipment.The feasibility and usefulness of prosthetics for upper limbs vs. lower limbs is really different. While we initially tried upper prosthetics we walked away from them when Lamp was 2 with the encouragement of our doctor who has worked with limb different kids for decades. Again, this is where finding an orthopedic doctor who knows limb differences makes a huge difference.

Going back to what I said about having extra medical complications…the last piece of advice is definitely applicable to limb difference moms, but also for all special needs parents everywhere. It is simple, but profound: TRUST YOUR GUT. I had many a ‘trust your gut’ experiences when Lamp was a baby and I can’t tell you how often my gut ended up being right. Wait, yes I can…100%. And it’s not just me, this is a common thing I’m always hearing from other special needs families: Trust your gut! I can’t tell you how many mama’s have had to push back against what doctors have told them to get their kids the help they needed. I don’t think of it as merely intuition. As mothers we are blessing with a knowing that comes from deep inside when it comes to the well being of our children. We have to be our children’s advocates as they can’t speak for themselves. This is the most important advice I could ever give another special needs parent.

LittlePeanutMagazine_AmyWebb_9WHAT MESSAGE ARE YOU TRYING TO TEACH TO OTHERS ABOUT CHILDREN WITH SPECIAL NEEDS?

Well I would say this is more a message about people and humanity in general. I think we all learn the same lessons, just through different mediums. For me I happened to become aware of these things through the lens of having a child with special needs. Anyway, there are 2 big lessons I’ve learned that I would consider my main message to the world. They sort of go hand in hand, but they’re a little different.  

First, going back to that terrible day when we had our ultrasound, everything about our situation looked bleak. The doctors had no idea what was going on, we had no idea what was going on and frankly all signs were pointing to “this is a bad situation with a bad outcome.” What I realize now is that an ultrasound machine is not a future-predicting machine. Don’t get me wrong–I’m grateful for the information it gave us AND I reacted how any normal person would and should react. BUT it was just a small piece of information in the total package of who our daughter is. An ultrasound machine can only tell you 1 thing definitively and that’s whether the baby is alive or dead. And if that baby is alive then any other piece of information it gives you is just one small piece of the entire puzzle. So to any and all parents out there who have had or will have that bad appointment, remember this is just one small piece of the entire package of the human life you have co-created. Of course you will mourn any and all bad news regarding an unborn fetus, but I would strongly urge you not to make a decision about termination based on this one small piece of the puzzle. Because here’s the truth: Every single human being is a total gamble. If ultrasound machines were really helpful, they would tell us who the future murderers, rapists, and bad drivers of the world were going to be.  Now THAT would be helpful information. Millions of parents the world over have had an ultrasound appointment where everything came back positive and normal, and they went on to have these ‘healthy’ children who grew up to be drug dealers, belligerent teenagers who sneak out of your house and wreck your car, liars, cheaters or just incredibly, terribly average people. And guess what? They love them anyway. When you think about the time you spent dating and choosing your mate it seems almost insane that we then go on to invite tiny humans into our lives where we get absolutely NO SAY in these little people are.  We get no say in their personality, likes, dislikes, abilities, disabilities. And we love them anyway. Every single human is a gamble and we love them anyway. People with disabilities are no different. I promise that you will love them anyway.

Second, I’ve already touched on this above, but the most important thing I’ve learned from being Lamp’s mom is also what I’ve learned from doing the special needs spotlight and it is this: we are valuable and priceless simply for existing. While I really appreciate a lot of the effort I see these days in teaching our girls to place more value on their brains than on their looks, the truth is not everyone is smart. So if we go about teaching that our intellectual ability is where our value lies we still miss the mark. Don’t get me wrong, I’m all for encouraging everyone to develop their talents and strengths to the best of their ability. I just want to make sure we don’t ditch one lie for another. One lie tells us you’re not good enough if you don’t look a certain way. Let’s not switch it for another lie that says you’re not good enough if you’re not smart, accomplished, talented, coordinated or successful. I’m not saying don’t be those things, I’m just saying don’t equate those things with your worth or the worth of another human being. I know it’s a fine line and one I’m still working out myself, but I believe this to my core. I have interviewed parents with children who couldn’t talk, walk, or even move independently, kids that don’t have typical brain function, who are missing limbs, missing eyes, kids with heart defects, and many, many more.  And every single one of them is priceless.  

And so is Lamp.

And so are you.

  
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