Just a little Sign, Please



 

When he signs "Love you" it's always to his sister, but this morning, it was to me, mom. My heart melted even if he did sign "Love you" while I'm changing a diaper.

 

 

When that perfect little bundle is handed to you and you stare down at those little eyes, that little nose, it doesn't matter who you are because suddenly that child in your arms is the most beautiful creature you have ever seen. To a mom, it doesn't matter if your little one is a boy, a girl, has Down Syndrome, is born with extra toes, born with sight problems, or is missing a limb. That child, resting in your arms is the most beautiful baby that has ever been born at that moment. Period. And you will protect, fight and love that baby with every thing inside you.

 

To most moms, especially NICU moms, that moment you lock them in the car seat to go home is the most joyous. You are now on your own after weeks or months in the NICU, to love and live with this tiny bundle entrusted to you. My Facebook post on the day we brought Bryce home after spending time in the NICU was:

 

"Ready......Set......GOOOOOOO!!! Here we go, all 4 of us are finally all together. Car seat locked in and off we go. Home."

 

From the time I was 17 weeks until Little B came at 34.2weeks, I fought to keep him in. I was on bed rest because of my high blood pressure and because Little B had tried to come as early as 21 weeks. I would lay around all day with a 4 year old active Miss A and try just to keep from having contractions. I remember one night, rushing the 25 minutes to the hospital, tears streaming down my face, praying to God "Please please not now!" I was having such strong contractions that I couldn't stand up, I couldn't breathe and they were coming every 2minutes. I was wheeled up to Labor and Delivery and when I saw the tiny NICU incubator and the 2 NICU nurses, I lost it. I was only 29 weeks, no this couldn't be happening. Thank goodness the doctor's controlled my labor and, after a 3 day stay on the L&D floor with meds pumping in my system, my contractions finally stopped. It would be 4 times total that I would be admitted and kept in L&D until finally, at 36 weeks, I was too far dilated to stop the labor safely. Little B was born with a hole in his lung called a Pneumothorax which caused his lungs to not inflate and my little man to struggle to breathe. After a CODE BLUE (where B stopped breathing altogether) and several very scary set backs, we were released from the NICU. We brought him into the doctor's office at 6weeks and had his hearing checked again, since he had failed both hearing tests in the NICU. He failed the one in the office as well. We were told he was very little and many times a NICU baby will fail a hearing test until they reach their gestational age. He would fail his hearing tests once more.

 

At 11months, thinking he had an ear infection, I took him into the office for a check up. He didn't have an ear infection, but the doctor noticed his ear canal was misshaped. He sent us home with instructions to see a specialist. The specialist would tell us that Little B was born with an "Organic Malformation" of his Ear drum and Ear canal. This means that when B was in utero, his ears didn't form right. We were told that he was deaf, that he would never talk. Big B and I were devastated. This was May of 2012.

 

How could we have a child who was deaf? How could that be? This wasn't in the plans. We had gotten pregnant with B without fertility drugs, without a doctor's help. that was a miracle since we were told we would not conceive without help and up until Little B, we hadn't. Then we dedicated Little B one year after we were told we would not conceive with IVF, to the month. Surely that was a sign, right? B was born is such a dramatic fashion, but he has never had breathing issues since, didn't need surgery and the hole closed so completely that the X-Ray Tech and the NICU doctor both had to make sure it was there to begin with. Surely that was God saying "I've got this Sticky Family". That HAD to be a sign, right? Deaf? Our baby boy was deaf? D-E-A-F! No, no NO...... clearly that had to be a mistake.

 

It wasn't. We spent the entire summer of 2012 talking to audiologists and speech therapists. We started getting services from Easter Seals and went to group play therapy. Our little man couldn't hear. As much as I would have liked to say " we took it all in stride" we didn't. Big B denied it because this was his little boy. I told only a handful of people because, right or wrong, I felt guilty for not being able to keep him in until the full 40 weeks. This was my fault, I just knew it. It wasn't my fault, it wasn't anyones fault.

 

By the time August came around I had absorbed myself in self pity long enough. I made one post on my Facebook page, telling all of our friends and family the news:

 

"After feeling sorry for myself for 3 months, I am finally done. Little B is deaf in his left ear and HOH in his right. We may have a child who can not hear, but his smile can light up a room."

 

The out poring of love from our family and friends was amazing. We had people getting us in contact with mother's here in our little part of Texas who were deaf or had hearing impaired kids. We had people who I knew had hearing problems calling and talking to us. I became closer to a women I know, who I now consider my "sounding board and helpful hints" in the deaf community. (Thank you Kimberly!!!) We had this amazing support system and we finally felt it okay to say the words "Special needs" without crying or feeling a choking since of anxiety.

 

It is now January 2013 and we have had so many amazing signs that our Little B is a true miracle. First is, we were told he was missing a a bone is his left ear. We had two scans confirming the missing bone, but after he was prayed for, the next scan showed a very underdeveloped hammer (the bone he was missing). The next came in speech. For months, Little B had made no oral sounds to try and speak, but more recently, he has made great strides. He now waves and says "I". He understands some simple commands and can sign up to 20 different signs. He is truly amazing, and we are no longer afraid to tell the world about our little boy.

 

Still, with all this wonderful strides he is making, I still worry. You see, this week is the week he gets his hearing aids. This week is the week we go and get those outward signs that says "something is wrong" to the world. As a logical person, I know that is really is needed and helpful and important, but as a mom.......... As a mom I am scared. Will people stare? Will they say something rude? Will they judge him? or worse feel sorry for him? Will kids make fun of him when he is a little older? Will he fit in? I'm scared. I'm nervous.

 

I know that once the aids go in, his speech will improve. I long to hear him say "Mom" just once. I will cry the day he does because I have waited so very long for him to say anything, but that word "mom"...... that is my dearest word. I can't wait to watch his face when has hears his sister's voice or when he hears music. I understand these aids are important, I get it. I'm just nervous. No parent wants their kid to be "different" even though each child brings with them a difference that is profound and all their own. Once he puts on the hearing aids, the world will know that he can not hear correctly without them. It's normal to feel apprehensive. It's okay to have these feelings. It's okay to feel unsure about the future. It's normal. Every mom or deaf person I have talked to has had these feelings or something similar, so I understand it's okay. I know that our little community of family and friends who love us will accept Little B no matter what he looks like, But the world can be cruel sometimes and I worry. 

 

He is my Little B, my little miracle, my little man. He is my child and I will fight and protect and love him. I will change him and tear up when he signs "Love You" and rejoice when he dances with his special headphones on made for HOH people. I love him because he is my baby. I thank God everyday for giving me him.

 

But I worry.

 

Mama Jelly 

 

 

 

I do Carpe Diem, thank you very much.

Recently, on the Facebook walls of many of my friends (many of whom I have actually met, in real life no less) I have seen this wonderfully written blog post about Carpe Diem in reference to one's annoying  interesting offspring. Written by Glennon Melton at Momastry originally, it showed up on the Huffinton Post no less. This wonderfully written and witty post had me laughing till my sides ached. Go read it!!! You will be nodding along as I was and saying "Yes, I agree." Go ahead, I'll wait. 

 As mom's, I'm sure we have all had those amazing, awesome moments when one or more of our dirty monsters beautiful angels are acting........ well......... um let's use the loose term "up", shall we. In the post, Melton mentions liking parenting to climbing Mount Everest:

"I think parenting young children (and old ones, I've heard) is a little like climbing Mount Everest. Brave, adventurous souls try it because they've heard there's magic in the climb. They try because they believe that finishing, or even attempting the climb are impressive accomplishments. They try because during the climb, if they allow themselves to pause and lift their eyes and minds from the pain and drudgery, the views are breathtaking. They try because even though it hurts and it's hard, there are moments that make it worth the hard. These moments are so intense and unique that many people who reach the top start planning, almost immediately, to climb again. Even though any climber will tell you that most of the climb is treacherous, exhausting, killer. That they literally cried most of the way up.
And so I think that if there were people stationed, say, every thirty feet along Mount Everest yelling to the climbers -- "ARE YOU ENJOYING YOURSELF!? IF NOT, YOU SHOULD BE! ONE DAY YOU'LL BE SORRY YOU DIDN'T!" TRUST US!! IT'LL BE OVER TOO SOON! CARPE DIEM!" -- those well-meaning, nostalgic cheerleaders might be physically thrown from the mountain."

She goes on to express what her children where doing when they were "acting up" and it is quite hysterical and so true. Our children find moments in everyday to embarrass the pants off us. I have laughed with mommy friends during in home parties of the antics of our children. More than one time, while out with Miss A and Little B, one or both are acting as though it is the first time in a month they have been let out of the house. Miss A is running the isles, usually yelling things like "FOR NARNIA!!" or "TO INFINITY AND BEYOND!!" or her favorite, barking so loud you can't think, while she is pretending to lick some unsuspecting patron in the Target line. (Have I mentioned that we are Disney Club members and that Lady and the Tramp is on a continuous loop? No?) I can completely get exactly what she is saying. I understand it, I'm right there with her......... to a point.

In the post, Melton mentions Kairos time or as she puts it "it's God's time". It's those moments in time when we really look at our kids and the world around us holds still, we enjoy that moment, breathing in their youth and their amazing wonder and think "You are my heart and soul." I get this too. Busy as we moms are, we forget sometimes to slow down and breath in our children, just drink in their personality and eye color and freckled cheeks. I understand Kairos time, this I can get behind.

The disgusting little truth? Even though there are moments when Miss A is licking people or having a famous "Drama Mama" moment, I still Carpe Diem. I still look at those frustrating moments and think "I only have so long." I know! I suppose now I will be thrown from the mountain.

As I've mentioned before, I had fertility issues. I'm talking serious problems, for years. Does this make me wiser or some how more intuitive; nope, not even a little bit. Does it make me just a smidgen more appreciative? Nope. There are mothers everyday out there who are appreciative. "What does it make you?", you might ask. I feel it makes me different, that is it. I see the days differently, I see the moments differently. Maybe because I had to give myself injections three times a day or because I had to endure rounds of invasive and painful procedures or because I had to ingest numerous pills to force my body to do what so many women can do on their own, the drugs and the injections have messed with my brain and have made me crazy. It's definitely a possibility, given that I Carpe Diem, ever Diem. But I just see it differently. I've had the drugs and the miracle, only to sit at a memorial service for my sweet baby, instead of a church dedication. I've been on the end where I spend long, tear stained days and nights hating God. I also believe that God gave me those children to help other grieving families who, heartbreaking, are just starting their grief. I have also known the amazing joy of holding your new born baby, just before you place him or her in the car seat to go home.

While this makes me different, I can already hear the grumbling. "Oh I see, she Carpe Diem, but that's only because of her history." Maybe, but more than likely, it's a personality flaw.

Take, for instance, the day Little B almost choked himself unconscious. Normal day in our household, Little B is on the floor, practicing his newest trick of rolling, like a little log toward the TV cords. This is immensely enjoyable for him. He rolls over to the TV, and wiggles himself until he grasps the cords that go to the wireless box and then, with this grin of satisfaction, he jiggles the cord, making it rattle. To a baby that is almost 8 months, this is a good time. To his parents, however, we see the danger in this.The whole TV possibly falling over or wireless box tumbling down and cracking Little B in the head is not the desired effect we want. As Big B has said "No one likes a flat baby."

So I had removed Little B from his usual line of attack for the umpteenth time in the last 10 minutes. He was mad at me and Miss A was out of the room for a minute when I heard, what can only be described as a silent gag. Don't ask me what that sounds like, but I just knew he was choking. I turn him over to discover a red faced, bug eyed, drooling baby boy. Reacting purely on instinct, since I haven't practiced nursing is quite a while, I proceeded to flip him over and whack his back and flip him back over to do chest thrusts at the sternum. Back and forth between whacking his back and hitting his sternum, until he vomited and a sticker came up. I bounced up, yelled at Miss A to get into the car and noticed his face was red again. He was making sharp, wheezing noises and I knew I hadn't gotten it all out. Throwing both children into the car, I rushed to the Texas Urgent Care unit. Normally, it is advised to call 911, but I live two blocks from the ugri-care. I made it there, rushed in with him, screaming, "he's choking!!!". A nurse, a secretary and a doctor rushed out to me and someone took him, preforming another round of the Heimlich maneuver, where he vomited up the remaining sticker. He took a large breath and screamed.

In those moments, as the Kairos time ticked slowly by, as I watched in quiet but loud awe of what was happening, I realized something. Not some revaluation of life or anything. No I realized that I didn't have on shoes. Know what else I realized? I realized my daughter was only wearing a t-shirt. She had on a t-shirt, panties and nothing else. Nothing. No socks, so shoes, no skirt, nothing. I also realized that Little B had only a diaper on. You may think "well, it was an emergency. what should you do? Stop and get dressed?" No. But what did I do? I laughed. I laughed until no sound came out and tears rolled down my cheeks. I laughed until I couldn't breath. I laughed until I was certain they were ready to sign the children over to CPS and commit me. I laughed. Loud. High pitched. Snorting. I laughed.

Not because of stress or because of relief. I laughed because it was funny. Us. This motley crue God pulled together and made a family, were standing in the emergency, half naked, hair unbrushed, a hot mess of a family. Do you know what else? After she cried because she thought it was her fault (Miss A had given Little B the sticker), she laughed with me. Because it was funny, because she needed to, and because she also has my ability to give the incorrect response at inappropriate times.

There are moments like this one, peppered all over the last 5 years. Moments like walking into the bathroom and feeling water drip on my face and hearing "I washed the celling." Moments where Miss A grabbed a pair a scissors and managed to "give herself a mullet" and chop off almost all of her then waist length hair. She got down to almost the scalp on one side and managed to have a mullet with a rat tail, impressive. Moments where she sneaks past Big B and takes finger paints to our shower after she strips down to her panties because she doesn't want to get her dress dirty. Taking crackers to her room for her dolls, resulting in an infestation of ants. Where she is in the church Christmas play and can not stand the bright lights, so she stands, the entire play, covering her eyes and saying "that is way to bright!" Moment after moment. Yes some she is sick in, some she is pitching a fit. Like the time she pitched a fit, and I, in my parenting awesomeness, pitched a fit to "show her" how silly she was. I managed to knock over a display of Santa's and she screamed "Mommy you killed Santa!!! Look his head came off!!"

Even in these moments, I Carpe Diem. I do. I look at her in my most frustrated moments and think "we only have so long and the magic is over." I can't wait to have moments with my Little B-man. I can't wait to see what he will get into, what he will say.

I guess I'm a Pollyanna, a rose colored glasses kinda gal. I may not always appreciate the time for what is , during the checkout line meltdowns, but I can appreciate the gifts that God has given our family. I can appreciate and be humbled that I am these kids mother. Not in a snotty "look at me I'm better than you way". But in a "I see their flaws and my own weakness and I laugh at it all and want it to last." I Carpe Diem not because some little old lady, with a wistful look in her eye says so. I Carpe Diem because she is 5 and he is 7months and I only have a few more years left to enjoy the pain and struggle of parenting.

While I agree that the good willing cheerleaders on the side of Mount Everest would surely get annoying and the climbers may want to feel like shoving them off. If it weren't for the cheerleaders, would the climbers even appreciate the moments where the mountain becomes hard? Would they even notice the mountain and it's tempers if it weren't for the ones who had climbed before? Would the climbers, huddled together in the cold and darkness think "I can make it one more day. I have seen the cheerleaders." I suppose my rose colored glasses make me want say "I sure hope so."