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
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