Hey you guys! So today I thought I'd do something special for the Special Needs Spotlight and feature Lamp. I actually got the idea from one of my readers (can't remember who!) and thought it was a good one. Then with it being Lamp's 5th birthday the timing was perfect to take a look back and sorta see where we have been and where we are now. Also, there are so many pieces to our story that are scattered throughout the blog, this is a nice way to have (most of) our story in once place--for new and old readers alike. Keep in mind I'm interviewing myself here, so I play with that a bit, but mostly the questions are straight forward and the same ones I ask in my other interviews. I link to several other posts throughout the interview that are applicable to the question. Also this is really long--something I usually discourage my spotlightees from doing--but since it's Lamp it sorta makes sense. And this took a lot of time so a huge shout out and a big thank you to all the families who have participate in the spotlight! I appreciate it even more! Enjoy...
Q: Well hello Miggy, fancy meeting you here. I’m excited to do this rather comprehensive look at the past five years of life with Lamp--where it all started to where we are now--as I know this will help give readers, both old and new, a more comprehensive look at our story. So let’s start at the beginning. Take us back to the day you found out Lamp was going to have special needs... was this at the ultrasound appointment, sometime after birth, or sometime later? Do you remember how you felt? Can you compare those first thoughts and feelings with how you feel now?
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 in my mind 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 so insensitive, but I felt horrible. In hindsight, the sunshine and this conversation all seem like an obvious theatrical foreshadowing for what’s 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. B, PSP 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. B and I look at each other and immediately our hearts drop. B 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.”
BAM. Punch to the gut. And just like that our lives were changed forever.
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 his words. 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, she was clearly going to have a host of issues all of which would remain unknown for an indefinite amount of time.
That day we felt utter despair and hopelessness. Gender suddenly became a non-issue and I don’t remember if I was more afraid of this baby dying or living with special needs. That was a hard, hard day.
The thing about time is that sometimes the joy and bliss of the present can actually reach back in time and almost change the events of the past. Now when I recall that terrible day I think, “It was just Lamp. Our sweet, spunky, amazing little girl. It was her all along.” And now I wouldn’t change a thing.
Q: Explain how Lamp’s needs affect your day-to-day life?
I recently realized that every day I forget I have a daughter with special needs and everyday I remember that I have a daughter with special needs. Our days and very typical and atypical at once. Lamp’s needs and how they affect her and our family overall have really changed over the years. It’s been amazing to watch her become so self sufficient. The cool thing is, she’s figured most stuff out on her own. Most limb different kids do. When it comes to learning the best way for her body to do something, she’s the expert!
When Lamp was a baby it was pretty rough because she was extremely limited in almost every physical aspect. Of course she couldn’t crawl, but she couldn’t even sit up consistently until 8 months old. Not having long legs makes it hard to balance on your bottom! It would be another 8 months before she started to make small strides in mobility with her little scooting. Learning to scoot was a huge accomplishment and we posted a video about it here. When she was about 18 months old is when she started training during therapy to learn how to use a powerchair. At first it was a little overwhelming to bring her chair home, but immediately it became an extension of Lamp and another tool in her independence and we loved having it home. While she still uses this chair today, she was recently gifted a smaller, custom chair that she uses around the house. This chair is super low to the ground so she can get in and out of it all by herself and because it’s adapted from an adult powerchair it goes a lot faster. Needless to say she loves it! And we do too… even though we’ve only had it a couple of months my husband and I have looked at each other often and wondered how we ever got along without it. While Lamp still can’t walk, she is also making strides in that area everyday and I’m confident that someday she will walk. Although honestly, it’s not that big of a deal if she doesn’t. You can see this little clip I recently posted on Instagram of her standing up for the first time ever completely on her own.
She can feed herself thanks to the amazing spoon (and now fork) her father made for her a few years ago. Honestly it was one of the most life changing inventions we’ve ever had for her. She uses her feet for her hands most of the time, so she can write with her feet, feed herself snacks, grab and do all sorts of amazing things with those dextrous 9 toes. Lamp is also able to (mostly) dress herself, brush her own teeth and she even makes her own bed.
But make no mistake--she certainly still has limitations. Like I said, she doesn’t walk (yet) and needs help getting in and out of a lot of chairs--like the bar stools in our kitchen and in and out of her carseat. If she wants to go outside we also have to help her get her chair in and out the front door where we still need to install a ramp. Being out and about can present some logistical issues--for example playgrounds can be tricky. Sometimes there is a playground that lets her be a little more self sufficient, other times it’s just hard because she needs me or her dad to hold her and assist her with everything. Which admittedly can get old for both of us. We still try to do a lot as a family and be active in many typical ways like hiking, going to parks and playgrounds, vacations, whatever.
Q: What are the biggest worries you face for Lamp?
By far my biggest worry is social acceptance and bullying. Like most kids, I definitely went through typical ups and downs socially as I was growing up, but true bullying because of her differences or even being left out because of her differences is on another plane in my book. One reason I blog, instagram and do what I do is that I’ve always wanted to build up this little army of Lamp followers out there, people who would maybe already know her and love her for who she is. I once had a fellow blogger tell me that she has a son who has special needs but that very few people knew about it and now that he was 9 he would have been mortified if his she had ever blogged about him publicly. I know she was trying to be helpful and suggest that perhaps I was being a little too open, but I told her that since her son’s needs aren’t visible they have the option to keep them relatively private. We don’t have that option. Lamp is a magnet for curiosity everyday, everywhere she goes and so the more awareness I can spread and share, I’m hoping the more it will positively affect her down the road.
She has dealt with more than most 5 year olds have had to deal with when it comes to social scrutiny and acceptance. When she was about 2.5 years old her awareness of her differences started to come and over the years we’ve had some really tough experiences. Our baseline normal when out and about is kids pointing and staring errryday. Lamp has really learned to cope rather well. For example when she sees kids or adults staring she looks them in the eye and says, "Hi!" But once we had a little girl screaming and crying, point at her saying “She’s scaring me! She’s scaring me!” My sweet Lamp was maybe 2 at the time and it was heartbreaking. To be clear most of the time people are amazing. But little kids have no filter and even though we can't blame them for their curiosity it still hurts. And curiosity quickly turns to cruelty if left on it's own. We really have to be proactive in teaching kids about differences.
Q: Now for a lighter question, I’m a big believer in seeing the humor in life and learning to laugh, so have you ever had any funny conversations/moments you never imagined due to your special needs situations?
Yes. Yes we have had many a funny moment due to having a daughter with limb differences. It’s a little unfair really because I like to think the limb difference community has the corner market on humor when it comes to special needs. I could be wrong, but probably not.
A lot of our funny moments have revolved around Lamp’s prosthetic arm. You can read about getting her arm here and why we no longer use her prosthetic arm here. Just having a baby with a prosthetic arm would cause us to yell things like, “Did you bring the baby’s arm? Where’s the baby’s arm? I don’t see the baby’s arm!” In public and you definitely get a few head turns.
My two very favorite stories are these:
The first takes place in a grocery store. Lamp is in the front of the shopping cart and big sister is sitting in the back. Like most kids with prosthetics, Lamp has figured out quite early that her arm is a serious weapon. So she starts hitting her sister on the head. Not too hard, but not-too-hard with a prosthetic arm is still pretty hard. I tell her to stop a few times and she pays no attention. I finally stop the cart, bend over and look her in the eyes and say in a firm tone, "If you don't stop hitting your sister right now I am going to take your arm off!" I may have gotten a nervous look or two at the grocery store that day. But also, I realized how awesome for me that I even had that option! High five prosthetics!
Second story. You have to understand that if you're not paying attention a lot of people wouldn't even notice her prosthetic arm. Especially if she had sleeves on and especially if they've got their own little ones they're chasing around. So one day we were on a playground and I was pushing Lamp on the swings along with other mamas and their babies. With her long-sleeve shirt on she looked completely “normal” and I remember thinking how nice it was to fly under the radar and just be a regular mom taking her regular kid to the playground. Lamp then asked to get off the swing. So as I'm picking her up and starting to walk away, suddenly and without warning her arm falls off and smacks right on the ground. I don't remember any actual screaming, but I think there were a few gasps, wide eyes and What the??? “It's OK, it's not real,” I said as I bent over, picked up my daughter's arm. “AHHHHH! Zombie apocolypse!!” I shouted jokingly as no one laughed. OK, I didn’t actually say that last line, but I really wish I had. In the movie version of this scene my character always says that line.
Q: How can people best approach or respond to Lamp? Is there something you wish other people knew so as to avoid awkward or hurtful situations?
So this can be a hard one but it’s so important. Also, my answer has changed slightly over the years (the difference from being a newbie to now having 5 years under my belt) but most of my answer is the same. When your child points, stares and says those embarrassing things out loud like “What happened to her arm!?!” and your gut reaction is to shush your child, turn them away and disappear as quickly as possible, DON’T. Please don’t. I get it, this is so hard. Instead, stay there crouched on the ground WITH your child and explain in the way that you think your child will understand the best because you know your child better than I do. “She was just born that way.” or “God made her that way, He makes everyone a little differently. Remember cousin Phil has a wheelchair? Cousin Phil was made a little differently too.” And if you’re still at a loss, “I don’t know honey, let's ask her mom.” is a totally acceptable option. A little effort will always be appreciated even if it’s clumsy and you feel like you’re “saying the wrong things.” Even after 5 years I don’t have a pat answer down. Each situation and each child is different and even for me this conversation often feels clumsy and awkward. If your child is looking and pointing at a child with a visible difference chances are your child did not hurt this kid’s feelings--Lamp has already heard it all before! What DOES hurt is someone turning their back on you, walking away and taking a potential playmate with them. *Update* I wrote a post entitled Helping Your Child Navigate a Special Needs Encounter here. The post details a great 4 part plan that will hopefully be beneficial for all parties involved.
When I have this conversation with children as I often do I use one of the “she was just born that way” lines and try to help them understand. Then after I talk about Lamp’s differences I also then find ways to bridge the gap like pointing out that “Her arms are a little different, but she likes a lot of the same things you like. Do you like ice cream? So does she! Do you like playing with toys? No way! So does she!” Maybe you can ask the child’s name or what they like to do… just find some common ground and show your kids that they are more alike than different.
The one way I feel like this answer has changed for me over the years is I used to just say, “Go ahead and ask questions! I’d rather you ask questions than just stare.” While it is always, always encouraged to let young children ask questions, I no longer think it is appropriate for an adult stranger or even older kids to walk up and say, “What happened to your kid?” or ask whatever question they want to point blank. If you’re an adult you really do need to resist the urge to stare and ask none-of-your-beeswax questions. Instead, treat my daughter like you would treat any other child--talk with her (or don’t talk with her as the case may be), ask questions and be friendly.
photo by Rachel Thurston
Q: I know from firsthand experience what a special role siblings can play in your special needs journey. Is there anything you’d like to share about your other children and their relationship to Lamp?
Lamp is a lucky girl having what I truly believe to be the best big sister she could ever ask for. To be honest I’ve been surprised by PSP’s inclusion of her sister in all her play. I always expected her to love her sister, but I wasn’t sure what to expect as far as their relationship--how they would play and interact together. When Lamp was about 15 months old PSP started grabbing her little sister under her arms and around her waist and carrying her off so they could go play. At first we worried she might hurt her sister, so we discouraged it but we eventually realized they both LOVED it. PSP would dress her up in her play clothes, get different toys for her and just play with her like she was any other kid. Honestly she adapted like it was no big deal and to this day I have never heard one word from PSP about her sister’s disabilities in relation to her having a limited capacity for fun or not being able to do certain things. It has never been an issue. In fact I would say that PSP’s acceptance of her sister has done a lot for Lamp’s confidence in ways she probably will never realize. I ingrain it into their heads often that they are best friends and super lucky to have each other. Lamp also has a sweet relationship with Zuzu who is finally starting to get in on the sister fun. Lamp loves babies and was so excited to be a big sister and you can really see it reflected in Zuzu’s behavior toward her big sister. Really they are a fantastic little trio. I always say I hit the jackpot with those three.
Q: Are there some ideas you had about having a child with special needs that have since changed?
Yep. I used to think having a kid with special needs was just burdensome, and that the parents who talked about their special kids with tears in their eyes as being great blessings and whatnot were either lying or they were the type of people who were just made of different stuff entirely. Like they were more angel and less human. Now of course I know that’s not true. What IS true is that I looked at people with special needs or disabilities with fear and that’s all I saw. I saw things I didn’t want to be or didn’t want for my children because a lot of those things that revolve around special needs revolved around our fears--health, intelligence, ability, coordination, success, etc. Now I know that love conquers all, including fear. If you are afraid of having a child with special needs, the love will be there and the love will see you through.
Q: What is the biggest lesson you’ve learned since becoming a special needs mom?
There are 2 big lessons I’ve learned that I would consider my main message to the world, the message that I want to spread far and wide. 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, the most important thing I’ve learned from being Lamp’s mom also has a lot to do with what I’ve learned from doing this 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 a focus on our insides vs. our outsides or in general 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 believe those things equate to your worth. 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.
And so is Lamp.
And so are you.
Thanks you guys.
Thanks for the love and support you have shown our family over the years.
I hope you have a great weekend.