… or crawls or walks. At 8 1/2 months, we don’t really sit up yet. While Christmas is in the air, I’m becoming more aware of the gross motor skill differences between Addie and other children her age. In some ways, I consider myself lucky to have a baby who doesn’t move much, yet. I don’t have to chase her around- she stays on her play mat and happily rolls from one toy to the next, but other times I feel sad. I want to wear her on my body. I want to have her sit up and look at me. I don’t want to worry every time she bumps her head that there will be some severe injury. I don’t want to feel the kyphosis in her spine. All good things in time… Sometimes, time takes a long while to come.
It’s Christmas Eve, and as people are tucked away in their beds, I am feeling Addie’s soft spot to check for a buldge. Like I do every night. I wait until she is asleep, then gently feel her head to make sure that there are no signs of hydrocephalus. Then I let her sleep. Just as Santa is making his way down our chimney, I will wake up to make sure Addie’s snoring isn’t getting worse. When the milk has been finished and the cookies all gone, and the big man is on his way to the next house, I will lay back down to pretend to sleep ’til dawn.
I love Christmas, but maybe my love for the season is rivaled with hate for it, in equal parts. I miss my Dad. I hate that we barely put up lights to save on an electric bill we already can’t afford. I wish my whole family could be together and not spread out down the east coast. And I wish I knew what the future held for Addie. There are a million things that can go wrong in life, I just want one wish for Addie’s first Christmas: A lifetime of happiness for my baby girl.
I remember last year at this time:
We were in Florida and I could not wait for Addie to arrive. My handsome nephew, Mark, had been born almost a month prior, and I could not stop snuggling on his little self. I couldn’t even dream of a human so small and fragile. But then, my Addie came.
This face is wise and curious:
She is, as far as I can tell, the reason I am here in this world. But sometimes, I wonder if I am good enough for her. Am I willing to wait for all the good things? Will I show her the right path to take, but let her choose her way? I want so badly to live in the now, but it’s so hard when the past is always nipping at your heels.
My dear baby girl. You are the comfort and joy, the wondrous night, what makes me laugh all the way home where you snuggle into me and keep me warm, you’re my good cheer and you help me live in Heavenly peace. You are my miracle. Christmas, or not.
Happy holidays to all who celebrate. May we never know what God intended for our lives, just that He intended them for us.
It’s no surprise I think my baby girl is the most amazing human to ever exist. She is, to me, magic. In the days after Friday’s tragedy, I find myself feeling more blessed and emotional than usual (which is intense). I have the opportunity to hold my baby girl today. I have a million and one things to do before the 25th, but my priority is to hold my whole world and kiss her little face, tiny toes and hold her hands in mine.
Addie arrived after personal tragedy. She came in the wake of a lost sibling. She brightened my life from the inside. She is my first birth… and what a birth it was! I cannot believe we are going to be celebrating our first Christmas together as a family. I cannot say that I didn’t know love without Addie, as my husband is one of the most selfless, kind and loving people ever, but I didn’t know how my mom never beat me (literally), or disowned me, or turned me over to the state. I didn’t know the love my mom had for me until I had it for someone else.
And so, before we go caroling into the neighborhood (or just try to regain some normalcy), I wanted to celebrate another milestone: 8 months!
She’s growing more beautiful by the day, and she is looking more and more like a child and not my infant. I miss her eyes closing at the simplest movements, but I love how she laughs when we dance. Her gentle sighs have turned into deep breaths and her once small movements have turned into rolling herself into the middle of the bed and pushing Dave and me to opposite ends. She is growing up. And I am so proud of her How silly she is just kicking her feet brings a flutter to my heart:
Just two months ago we celebrated with cake (she didn’t have any) and candles and balloons!
She was like “woah!”
6 Month Photo-shoot!
I love that smile… and I love how silly it is to celebrate 6 months. But, in life, the big stuff is just all the little stuff piled together.
Just a few weeks later, it was her first Halloween…
Standing with some help
I had asked lots of people to write a letter to Addie, but I’m the only one who did. I think it’s a mom thing, but I want her to know how much I love her- long after I’m not here to tell her:
My Dearest Adelaide,
From the very moment I dreamt of your existence, I felt so in love. Then you were on your way and thought my love could get no deeper. When you first put your head on my chest, my heart stopped. Each and every day I love you more. you are amazing, loving, smart, and so happy! How I got to be so blessed to be chosen by you, I’ll never know.
Happy 6 months!
love,
Mommy
And then she was 7 months…
Growing curiosity
Next will be 9 months, and then 10. And then, before I know it, she will be walking, talking. Talking back. She will not like me for a while… but I hope she will come back. This brain of mine rattles off ever different circumstance that could pull her away, but she will always be my baby. I hope that I am blessed to be a mother like mine. To love unconditionally and let Addie fly, the way I flew away. But I never went far. I like to sit on the perch, close enough to home, but never back inside. I am encouraged to be on my own, but I know that my mom is always close by, even if that means a 250 mile drive in the wee hours of the morning. Yeah. That’s the kind of mom I want to be.
Happy 8 months to my beautiful baby girl! May you stay forever young at heart! Thank you to God, or whomever is watching over us, for giving me another day. Another milestone. Another month and birthday to celebrate this beautiful baby.
There are many discussions about mommy wars and who is the better parent (what is better anyway?). Who is right and who is wrong, and a whole bunch of opinions being tossed out by people who are not the parent of whatever child they have an issue with at the moment. People, remember to stop and smell the tulips sometimes. Life doesn’t have to be just one way. Oh, it’s roses, you say? We don’t all smell the same flowers:
Sadly, this is nothing new. When I was engaged, my husband got an anonymous letter in the mail (typed) about not marrying someone for the wrong reasons. Yep. This happened. It was sent to his shop, from a zip code on the West End of Providence. It could have been anyone, but I have my own personal list. I remember someone making a comment about robbing the cradle and then winked at me. *ahem* I was 24 when I got married, I just looked like a baby.
Allebach Photography
So why did I think when I had a baby opinions, odd questions and random “winks” of knowledge would end? Because I’m hopeful, I suppose. I feel like having a child who is but 1 out of 45,000 makes her so special that people feel they can ask anything and it’s appropriate because it’s different, but rest assured, some questions are not meant to be asked. Google it next time, perhaps? BUT, more than a few people have asked me the following questions, so here are your answers.^
1. Will Addie grow normally and then stop at a certain age? Addie will not grow as an average height child would. She will grow slower and possibly reach a height between 3 1/2 to 4 feet. Like any other person, she will be finished growing in her late teens. She may experience growing pains like anyone else, and she has growth spurts as any other infant does. At almost 8 months, Addie is about 24 inches. An average height child would be about 27 inches at 8 months.
2. If Addie’s head is bigger, does that mean she has a bigger brain? Does that make her smarter or dumber? (*One person actually asked if she would be more smarter or more stupider)
Addie’s head is bigger than an average height child’s head. In some cases with an AH child, this could mean a number of brain or skull abnormalities, including hydrocephalus. We were blessed in that Addie’s head size is just a physical tribute to achondroplasia, and does not have anything to do with a medical issue. Because her skull is larger, her brain is, in fact, larger. This has no bearing on her intelligence, either way. Children with achondroplasia are not more likely to have down syndrome, be autistic, have ADD or ADHD or have any certain allergies. Quite simply, their heads are just a bit bigger than average.
*This was from someone at a store who had commented on Addie’s head size and the conversation took off from there.
3. Will her body be even? I wasn’t exactly sure what this question meant until it was re-worded as: will her body match. The question is still strange, but I understood it better. The answer is: no. Her body will not match or be even. With achondroplasia, the torso is closer to average size, while her arms and legs are shorter. Addie will also have small hands and feet, and as stated, her head will be a bit larger. A common, though not necessary, feature is a little bit of a belly and rolls. Though it’s cute now, this is not something that Addie will necessarily grow out of, thus nicknames such as Michelin Baby or Buddha are truly not things we want her to be called. She is beautiful, but her body will be different. I celebrate her different! The way she needs to have her jeans cuffed already and it looks super cute on her. The way 3/4-length shirts fit her arms perfectly. The way she wears super-cool toddler hats that are too big for most babies. The way I have more baby skin to kiss and more belly to tickle. A full head of hair to brush and small hands to hold on to. Her body is beautiful.
4. Can she have babies? This question has been asked over a dozen times. The answer is, medically, yes. Addie can have a child. If her partner is another person with achondroplasia, there is a 25% chance of her baby being average height, 50% of the baby being a dwarf and a 25% chance of the child being born with 2 copies of the gene, which is fatal and known as homozygous Achondroplasia. There are a few different types of dwarfism combinations here. Not all numbers are the same depending on your source- science… so un-exact sometimes.
Addie will, if she decides to have children, need to have a cesarean section- but, she should, with a healthy lifestyle, carry a pregnancy just fine.
As her parent, she has to be allowed out of the house first, so NO, she cannot have a baby!
5. Is there a cure? And finally, no. There is no cure. Dwarfism is not a disease. Addie’s achondroplasia was caused by a spontaneous mutation in a gene called FGFR3. There is nothing wrong with her. She laughs when I dance, she babbles about her “dadadadadada” and she rolls all over the place to get what she wants. She can stand when leaning against her crib railing, and she puts herself to sleep at night. She loves carrots and turkey, and she thinks throwing things on the floor is hysterical. She eats puffs and her toes. She loves to swim and pull my glasses off my face. She is your average baby… just a bit shorter. But, if you didn’t know this already: the best things in life come in small packages.
I am aware that there are some awkward double standards out there, my least favorite being if you look up what a child with dwarfism looks like on Google images, there are multiple pictures of naked children with dwarfism. If those children were of average stature, that would be child pornography. I do not think it is human to want to examine a anyone in this manner. I know when people first see Addie sometimes I see their eyes scan her whole body, looking for something to be different. Searching her limbs for their incongruity with her torso, or staring just a bit too long at her head or belly. I’ve seen the look in the eyes when they’re caught. The shame that floods someone when they’ve examined a child the way a scientist looks over a subject. Someone whispered an apology to me. The size of cars, football teams and pickles are described using a derogatory term that offends thousands of people, yet the media still uses it widespread. Imagine another derogatory term used so casually? I’m sure the ACLU would be up in arms.
That being addressed, please ask questions about dwarfism. Remember the way things are worded and what your words insinuate can hurt and offend. If you wouldn’t want someone to ask you questions in such a manner, perhaps an internet search may be a better way to find your answer. I am all ears and eager to learn the things that I don’t yet know and educate others on the things I do, but when things get personal- please remember- this is, and always will be, my baby.
^ Not every question on this list was inappropriate, but sometimes the way the question was posed was what got to me. Again, please be a wordsmith when asking tough questions.
With the holidays coming up, I am stressed… I’m also decking the halls, testing the lights to be hung, singing [annoying] songs, wrapping up ornaments for stocking stuffers, ordering gifts that reflect my love for friends and family (I’d love to send you all on a vacation or pay your mortgage, but for what we can afford, I’m pleased with my selections), and, my favorite of all, preparing Addie for all the good eats!
We have been chowing down here at the Martinka house, with an extensive list of foods tried and liked. All of them liked, if not loved. She is, most definitely our baby!
With Thanksgiving tomorrow, I wanted to prepare her. So, these past few weeks we’ve been enjoying Fall foods in anticipation for the upcoming delicious-ness that is about to take the nation by storm! Turkey. Squash. Sweet potatoes. Pumpkin. Peas. Cranberries. Stuffing… And so… we’ve tested and tried and we LIKE!
I’ve come up with recopies of my own, and hope that they help you introduce your cherubs to some of the sweet holiday treats (minus all the sweet!) I also introduced cranberry via Earth’s Best, as me making cranberries is always a tart and sugar-filled mess. I want Addie to like them as much as I do, and that means leaving it up to some food making (organic) experts:
Turkey, Squash and Pumpkin
Using lean, organic ground turkey, cook 1 cup through in a pan- you do not need salt, pepper or oil. Once cooked, put in blender.
Take out 4 squash ice cubes (I’m sure you have them in your freezer… they probably take up half of your space). If you don’t have frozen cubes, use about 1/4-1/2 cup steamed (cubed or mashed). Put in blender.
Open up a can of organic pumpkin and spoon 1/2 into the blender.
Add 1/3 cup of water.
BLEND! Addie doesn’t like “mush”, so I blend until there are no large chunks. I suggest adding breastmilk or formula when you feed, as the water will be quickly absorbed and the milk helps soften the food for those of us with no teeth
Beets with Pears (Great recipe for making cubes to freeze)
Using a whole can of organic sliced beets, steam in double boiler until soft. Use the juice from the can, as well as water to steam.
Peel, core and slice 5 whole pears. I used a variety to offer different textures and flavor. Steam until soft with the same water as the beets.
Place both beets and pears in blender with 1/4 cup of water FROM THE STEAMER.
Blend until it reaches desired consistency.
WARNING: Beets juice will stain… a naked baby might be best for your laundry. And, do not be alarmed: beets can turn your baby’s urine a shade of red.
For those of you who don’t eat root veggies, beets smell like dirt. Really. However, they are delicious and wonderful for you. If you don’t like a food, please still offer it to your baby to try. I know it can be kind of gross for you, but I promise trying will be fun!
Chicken with Beets and Peas
Bake one boneless chicken breast in a glass pan (no oil needed) on 400 for 45 minutes. Always check to make sure it’s cooked through.
When it’s done, slice it up and put it through a grinder:
Prepare the beets as I stated above in the steamer and put into the blender with 1/3 cup of the water/juice blend used to steam.
Prepare peas, fresh or frozen (which are frozen at their peak, so they’re perfect for you or baby!), drain, and place in the blender.
Blend peas, beets and chicken in blender until well mixed!
*TIP: purchase organic ground turkey and chicken… it’s a pain in the tail to grind! Use a large portion for taco night and prepare the rest (plain) for baby!
I hope your Thanksgiving is amazing and you enjoy this time with family and friends. I am loving being a mom and preparing nutritious meals for Addie is so rewarding- both now and, I’m sure, in the future. Instilling a healthy present, full of good foods, eating habits and extensive palate I am hoping to give her some of my favorite holiday memories without the holiday (or life) guilt, for her to cherish in the future!
It was amazing.
It began with me missing the exit, and ended with me in tears at Saladworks.
In the middle, I suppose, is what you want to read about.
We got up early on Thursday morning and prepared ourselves before dressing Addie in her finest romper (read: simple to get her in and out of). I must have been incredibly nervous, because I didn’t take one picture. Not a single one.
Once we were in my mom’s minivan, I set the GPS and headed to the closest Dunks. We loaded up on coffee and jumped on the PA Turnpike. My hands were sweaty, despite the chill in the air, and the drive went well. It turns out that Wilmington is only 70, or so, minutes from my parents’ house. Even missing an exit, we still got to the appointment early. We arrived and were directed to the clinic, where we were welcomed with smiles and open arms. But, enough of that- onto the meat:
We learned a lot of things in our 80+ minute meeting with Dr. Bober and his assistant, Angie Duker. These were the thoughts I’d had just the day after our trip about our experience so far:
We arrived at the train station just 15 minutes before we had to board. It was perfect timing. As we ran in through the thick drops of drizzle, Dave grabbed some milk for the coffee we had made, and we waited for the All Aboard to flip up on the Amtrak screen. We loaded ourselves onto the train; baby, suitcase, duffel bag, diaper bag, toy bag, lunch bag, milk cooler bag and car seat. Once settled in our seats, Addie took her bottle of milk. We pulled into Penn Station in New York a few hours later and I moved into a window seat. As we pulled out, Addie looked out the window, then back at me. Belly-to-belly, she plopped her head down on my chest and fell asleep for her nap. Right on time.
She awoke, her noggin popping up with a smile plastered across her face. Then a frown. Time to eat! Addie chowed down her milk and then happily cooed and spit for a while.
She was wonderful the whole ride; following her nap and eating schedules as usual- and making do with having to sleep wherever- including on my legs.
Then it was Thursday, October 11. The day began like the rest had in the previous week. I was up at 4:30am, unable to sleep through the night since receiving my copy of the sleep study. Mild disordered sleep. What did that mean?
As Dr. Bober reviewed all the papers I had so carefully sorted (Medical Records, Birth Records, Early Intervention, Genetic Testing, Skeletal Survey and Results, Growth Charts), I was still nervous. Finally, he asked Dave and me what we knew about achondroplasia. I froze. What didn’t I know. I said a few things and he stopped me. We reviewed my biggest fears, from central sleep apnea to decompression surgery and hydrocephalus. We talked about milestones (I have some new charts… I will make a page for them!) and we discussed sleep. While Dr. Bober was not concerned, he did tell me to just keep an eye on Addie and if I notice any changes in her sleep to contact him. However, as of October 15th, when we went to the sleep specialist in Boston, we are scheduled for a second sleep study in March. The sleep specialist would like to see her central sleep apnea occurrences a little lower than they are. Who knew one person could need so many doctors, yet be deemed healthy?
Beyond that, we reviewed Addie’s soft spot and it’s measurements. We were told what to look out for and that a little bit of extra fluid is common, but nothing to worry about. We were told to feel her soft spot once a week. I check every night.
Dr. Bober also talked about spinal stenosis, and the difference between it being a feature of dwarfism and critical. I felt relieved to know that Addie doesn’t present with any signs of critical stenosis, but knowing that the first 24 months of life are where hydrocephalus, bowing and stenosis will most likely show up in childhood, I feel like I’m having a private countdown while I should be enjoying each day, I am bombarded with looking and checking and feeling and testing.
I know. I need to relax.
Then, we moved onto examining Addie: 23 3/4 inches, 14 pounds 2 1/2 ounces and a head circumference of 17.8 inches!
She can’t straighten her arms all the way, which is just another feature of dwarfism that many people have, and, after reading the doctor’s notes (sent to me in less than 3 weeks!), she shows some signs of bowing (bilateral genu recurvatum). Yes, I looked that up- as well as over 10 other “musculoskeletal” notes about appearance. We will be seeing Dr. MacKenzie in April, as well, and he will probably have more to say about that then.
There really wasn’t bad news, per se-,but there were some things to look out for and preventative measures that need to be taken. For instance, a common issue with achondroplasia is kyphosis. Addie presents with lower lumbar kyphosis (when you hold her, you can feel her spine stick out in her lower back):
The fear with this is that in the lumbar region of your spine, your bones sit parallel. If your spine curves the opposite way, the bones will grind into each other, causing the bones in the spine to break and look “bullet-shaped”, instead.
This is not Addie’s spinal x-ray, just an example.
When we hold Addie, we need to provide full back support. That includes when she is up against our chest, applying slight pressure to the base of her spine to help straighten it out, and when she is in our lap, letting her lean against us. Anything she sits in needs to be a hardback, allowing her to conform to what she sits in and not the other way around.
Pressure on the low back. Leaning back to create spinal support.
Sadly, this limits our carrier time to never. I had always imagined myself a baby wearing mama, but having a healthy baby means more- and so, my arms are always full and so is my heart!
Addie’s first pic in the Bjorn… before we knew!
What IS good for her, however, is tummy time, as it brings her back into an arch… which is great! She is a happy camper on her belly, for the most part, and (as of October 27th) if she doesn’t want to be on her back, she rolls to her belly = A total baby-body workout!
Addie playing some music on her belly!
Some more interesting facts:
* Due to the shape of the ribcage, the liver is [usually] able to be felt. This is not true on an average height child, which is something to alert doctors of should they have a concern. Sometimes, it is falsely interpreted as a swelling.
* Addie’s arms do not fulling extend by about 20% at the elbow. This is totally normal, and should not inhibit her in any way. She does have lower muscle tone, primarily in her arms, but that is just another feature of dwarfism. As well, her limb disproportions were noted in her arms as rhizomelic, and her lower extremities are rhizomelic light. This refers to her arms as short (the long bones) and her legs as mildly (for a dwarf) short. She will, most likely, be around 4 feet tall.
* The diagnosis of achondroplasia could have been made with ONE x-ray of her pelvic bone! The blood test, however, confirms it.
* Dr. Bober feels Addie is doing great! (This is my favorite fact!)
And so, this is how Delaware went.
We met with a great family when our appointment was over, there were lots of smiles and handshakes and then we were leaving… and I was shaking. I was gripping Addie so close to me I could feel her little Buddha-belly flatten against me.
Dave and I decided that we had not eaten, and so we needed to get food in Delaware. (If you’ve ever seen me hungry, you know it’s a sight better left for horror films and psychiatry studies.) We made a left out of the hospital and came across a Saladworks- one of my favorite places to eat. We walked in and parked ourselves at a table after glancing at the menu. I knew what I wanted, and as I told Dave I looked over at Addie. Perfect. Small. Addie. And I grabbed Dave, locked myself in his grasp and cried into his shoulder. I cried for the relief that Addie is OK. I cried for the fact that she will have struggles. I cried because I have not slept through the night since she was born.
We learned a lot, and we will continue to learn. Thank you for taking this journey with me as a woman, as a mom, as a parent, as a friend.
I like to blog about Addie… she is amazing, but I realize that not everyone who reads this blog has a child with dwarfism- and even if you do, you need to eat as well! And so, I’d like to expand my horizons.
My sister is a resident of the fine state of Florida. Personally, I wish she lived closer, but I love when we get the opportunity to visit (or the idea is appealing, at least). While reading her posts on Facebook a few months ago, I came across a blurb from Babyourself, which is a magazine (BEAUTIFULLY published) available in the Orlando area to moms. Its focus is certainly about the area, but I showed interest, and even though I am quite out-of-state, they send me each publication. I LOVE it! There are awesome tips about parenthood, mom and baby health, sleep tips, beauty, fashion, and with all the sun care info, I know that I can plan for any vacation we take.
In the most recent edition, there is an article about the Top 10 Favorite on-the-go Products. I loved reading it (and Lord knows I wish they were having a Gucci Solo Tote giveaway, like the one featured on page 10)! There were some great tools in-between each of the pages, and the article was artfully placed throughout the magazine, offering great items that I never knew existed and giving me some great gift ideas for my new-mom sister (hello iPhone LifeProof case), and ideas on how to use gifts I’ve not used yet (mommy hook!).
Page 23 offered me just what I was looking for- GREAT dinner ideas. It was Saturday night and I had just seated myself on the bed after enjoying Dave’s day off (his only day off), scanning my new mag when I came across the Hamilton Beach 4 quart Slow Cooker.
That was what the item was (I have my own crock pot), but what caught my eye, besides the fancy pattern, was the recipe featured!
Slow Cooker Curry Chicken
Just mentioning it to Dave set his taste buds off. He was waiting for Monday night already!
I checked the freezer for chicken: Check!
Curry powder, cumin, paprika, salt and coconut milk: Check!
Peas with carrots (frozen): Check!
I needed broth and carrots…
I ran into Stop & Shop to grab what I needed… and came out with broth and milk. I had forgotten the carrots, but thankfully had frozen peas and carrots in the freezer. (I called Dave and he picked up couscous on the way home.)
I deviated from the recipe by using 4 large, boneless chicken breasts with the same amount of spices, ADDING 1/2 tablespoon of chilli pepper for a kick. Halfway through the cooking time I cut each chicken breast int large chunks. When there was 30 minutes left on the timer I added a cup of couscous to soak up the remainder of the fluid and cook with all the flavors. Because I used frozen chicken, I cooked for the same amount of time on HIGH instead of LOW.
It was delicious. There is even enough left over for Dave to take to work and for me to have lunch!
I am SO glad I found this magazine- incredible information AND amazing tidbits that got us out of our crock pot rut! Best part: Addie and I watched So You Think You Can Dance on Hulu while dinner cooked. Crock pot win!
Happy Sunday!!! On this day, may we please remember that we cannot control the actions of others, no matter how hard we try or how much we want to… and be thankful for those who are gracious enough to ask.
Does anyone remember Rocco’s Modern Life on Nickelodeon? He used to say, “… is a very dangerous day.” That describes grocery shopping day for us. We go to the store most mornings on our walk and pick up what we will need for dinner- like peppers or onions, or a special sauce. It’s nice to cook fresh meals with Addie, and I love the lessons she can learn in a store, such as colors, foods and numbers. Oddly, every visit, I feel like I have to protect myself and her from random people. Are boundaries such a thing of the past?
When I was pregnant, touching my belly seemed to be the thing to do- including lifting up my shirt “just an inch” to see my “ink”. Ew. Please do not refer to my tattoos as ink. It’s a pet peeve. Lifting my shirt up (unless you’re my hubby) is also a pet peeve. Go figure! A fine looking belly, it’s not yours- hands off!
Which brings me to Addie… Putting your hands near or in her mouth or hands (which spend most of their time in said mouth), is gross. Taking your mitts off your communal shopping cart to do so; that’s just poking the bear. What is the obsession with reaching past me, The Mom, and touching my baby? Watching someone put their knuckle in her mouth makes me feel sick, imagine how, literally, ill she could get.
…and why do people want to touch a sleeping babe? Wake her up, and you’ve poked the wrong bear! She may be small, but she’s pretty darn fierce, too.
Strangers ask to pet my dog, Carter. My happy, loving, catahoula mutt- who wants and begs to be pet by the dirtiest of people and will gladly lick the gross off your hands, yet people don’t ask to touch the fruit of my loins?
Is there something amiss with society today? I know that babies are cute- I’ve just never had the urge to put my fingers in the mouth of a child. Having a baby brings a whole new perspective on life, especially a life that I have 100% control over keeping safe.
If you don’t have kids, please trust that I’m not crazy, I just want you to wash your hands, twice. Then shower and use hand sanitizer, then you can hold my baby. Or, better yet, just wash your hands and ask politely, and I’m sure I’ll oblige.
Addie tried oatmeal! We wanted to mix it up a bit, because baby oatmeal is bland, so we mixed it in with squash and milk, and YUM!
I love watching Addie learn every week how to get the food in her mouth and how she enjoys each new food we introduce. This week was supposed to just be oatmeal (mixed with squash or milk, etc.), but her belly started to hurt. We used oatmeal, not rice, because rice is so binding, but oatmeal can be, too. I talked to the pediatrician, and she said a little pear juice would be great to avoid any issues, so we mixed oatmeal with pear juice and she loved it! …and feels much better.
Inadvertently, we introduced pears, but she loves the juice with the oatmeal and so- pear juice it is!
Everyday is an adventure… the food adventure part is one of my favorites! All of her new I’m enjoying this mom, thanks sounds, and her sheer frustration at not getting more sooner makes me laugh every time. I adore this little girl who still loves to nurse, but has these grown up moments in her day where she envelopes her whole self in food. Tasting new things, trying new textures, taking a few moments to wonder and contemplate, then demand more- being a big kid, and not my infant.
Holding her close to my body, watching her breathe in and out, and she snuggles and sleeps, I know I have to cherish each moment of her being a baby, but getting excited about each new thing that leads her to growing up is the most awesome experience- I have the most awesome experience of my life, everyday!
Everyday I learn something new… and so does Addie. Today she is 5 months young, and showing me new things everyday.
Happy birthday, beautiful.
Looking back to before she was born, I want her to know how excited we were to be having a baby- HER! … Here I am at 35 weeks.
Parenthood is scary, but knowing that I have such an amazing daughter, makes each day beautiful!
There is a poem I’d like to share, called Going to Holland. It was shared with me to “make me feel better”. I know it makes people feel better, and I understand what it is trying to convey, but it is not how I feel. I’ve never been sad that Addie has achondroplasia. I am scared sometimes- I don’t know what the future holds- but I am not sad, I am not disappointed, I do not feel shafted. Having an LP child, I know some times a parent’s reaction can be anger, and that is OK for them. I just don’t have anger at her. I feel angry at God or a higher power when I watch her cry and can’t hold her and make it better. When she is getting poked and prodded, wrapped up, imaged, scanned and more. I do not consider Addie disabled, and I will not treat like she is.
Going to Holland (Emily Perl Kingsley)
I am often asked to describe the experience of raising a child with a disability –
To try and help people who have not shared that unique experience to understand it,
to imagine how it would feel. It is like this…
When you’re going to have a baby, it’s like planning a fabulous trip – to Italy. You buy a bunch of guidebooks and make your wonderful plans. The Coliseum, The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It’s all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags, and off you go. Several hours later, the plane lands. The stewardess comes in and says, “Welcome to Holland!”
“Holland ?!? ” you say. “What do you mean Holland ?? I signed up for Italy! I’m supposed to be in Italy. All my life I’ve dreamed of going to Italy.” But there’s been a change in the flight plan. They’ve landed in Holland and there you must stay.
The important thing is that they haven’t sent you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It’s just a different place. So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It’s just a different place. It’s slower paced than Italy, less flashy, than Italy. But after you’ve been there awhile you catch your breath, you look around… and you begin to notice that Holland has windmills…and Holland has tulips.
Holland even has Rembrandts. But everyone you know is busy coming and going from Italy… and they’re all bragging about what a wonderful time they had there. And for the rest of your life, you will say, “Yes, that’s where I was supposed to go. That’s what I had planned.”
And the pain of that will never, ever, ever, ever, go away… because the loss of that dream is a very Significant loss.
But if you spend the rest of your life mourning the fact that you didn’t get to Italy, you may never be free to enjoy the very special, the very lovely things…about Holland.
…but I am in Italy. Well, no. I’m in Rhode Island, which is not where I want to be, Italy isn’t either, but if we’re on the topic, here goes: Parenthood is Italy, as this author describes. Or, in my case, Holland. I’ve been there, and I loved it! I have never been to Italy, and while I do hope to go someday, I will always have a place in my heart for the trip I took with USA Field Hockey to Holland. I know plenty of parents with children who have no diagnosis and they are not having a good time.
It may get hard for parents of LP, but it’s damn hard to be a parent in general. Sure, my opinion my change, but being blessed that Addie chose us will never be Holland (although I’ve been and I loved it), she is Italy (where perhaps someday we will all travel to together). My dream was not to have an AH or LP child, my dream was to be with the man of my dreams and have beautiful children. Here she is, as Adelaide Eileen. There is no significant loss, there is no pain. There is beauty, little giggles, big coos, snuggles and kisses. Sometimes there are tears, but would the smiles be as big without them?
We left home, after I’d shoveled dinner down my throat, at 6pm on the dot. With GPS in hand, I ventured onto 95north and made our way to Boston Children’s Hospital. We had great directions, and after one extra trip around the block and an illegal U-turn, we made it to the parking garage.
Armed with the diaper bag, and overnight bag and the tote pump, we headed into the hospital. On the way, Addie practiced for her sleep study!
We got checked in, I got my fancy badge and we headed to the 9th floor.
We waited for a few minutes and we were escorted to our room for the evening. Addie was all smiles as the nurse and tech made coos at her.
Her blood pressure was high, so I’m concerned about that- more things to make my mind race- but she was looking great, otherwise, and was ready to be hooked up. And so, it began.
As she got her head wrapped to avoid pulling her wires off, she was so upset. My stomach began to turn and my eyes were hot from the tears behind them.
I kissed my baby girl and let her slip into dream land.
But, she did fall asleep… and then she didn’t.
From 3am-5:30am she was up and down all night, and it broke me in half knowing that all she wanted was to be held. I tried to pick her up, but she just screamed. Her head was hot, her feet were cold, and she couldn’t breathe properly with all the tubing up her nose and the gauze around her face. She was wrapped up so tight that she could barely open her eyes.
I felt awful. She was so uncomfortable, and knowing that if I had asked she could have slept in the bed with me makes me so sad she had to do this alone.
It’s scary to watch your child sleep when you’re looking for things to be wrong. Her legs move in her sleep. Is that bad? Sometimes she holds her breath in frustration- with the wires- but I don’t think she normally does that. She kept fussing, which she doesn’t do at home. She sighed in her sleep. Is she OK? Is that normal? My head was screaming with what-ifs, and what was that thoughts. And my little love was hooked up to a million wires and wrapped up like a mummy. And this muommy didn’t like it!
I ended up on my knees on the big bed, leaning the top half of my body onto the crib and holding her hand so she knew I was there. I was awake from 3am and held her hand while I pumped her morning bottle, since nursing her was out of the question- we had to be out by 7!
She was happy once all of her stuff was off, and she was smiling, regardless of being a sticky, matted mess. Her little face was broken out from the gel and pads, but she was free!!!!
I made it to 93south without directions or GPS and was so excited to be on the road home. She slept a little bit, but with the traffic so stop-and-go, she couldn’t get totally comfortable.
At home, she passed out cold on the bed, and there she stayed for a few hours. I have a lot on my mind- why the high blood pressure, what will her study reveal (if anything)… and how do I get the gel out of her hair!? Sleep study nights are not my favorite, but we survived our first one, and I am so proud of my buggah for being such a trooper.
