Monday, March 28, 2016

Why Adoption Was Our First Option

  I think the number one question I hear after I tell someone that we adopted, is "why?"  It's an interesting thing, because while in so many ways we are just normal parents - this is part of our life that will always be utilized to educate and advocate.  I think if our child didn't look exactly like us, we would be living adoption more often- probably every day.  My husband and I both grew up saying, "I'd love to adopt one day!" I'm learning there's just a lot of people that say that and quite a few less who actually do.  Your heart and your life circumstances usually have to strongly connect in order to adopt, in my opinion.  

  Like most married couples, after awhile you start yearning for that "Baby in the Baby carriage" part. After 18 months of really trying to conceive, we had one false positive. They exist. It was devastating. You name it, I tried it; positions, foods, special diets, gels, lotions, vitamins, not stressing, chiropractor, oils, acupuncture, ovulation sticks, every night, every other night, etc. etc.  If there was a "right way" to get pregnant, we certainly tried it.  It was exhausting. Amidst our efforts, I suffered the tragic loss of my Father whom I was very close to.  Without a doubt that added stress to my body.

  I was honestly ready to throw in the towel for some time when we took it to a fertility specialist. The results showed that I have what's called Diminished Ovarian Reserve a known side-effect of Accutane (a serious acne medication) which I had taken. Do I think this is what did it? I'm not sure and truly I don't really care. It cannot be changed, so I don't stress it. 

  Hearing the news was difficult, especially while still mourning my Dad. To now be grieving this loss was almost too intense. I mustered up all the logic and strength I could, and I gave it 24 hours to feel completely sorry for myself. I cried the whole time. 

  Within that 24 hours we decided to cancel the next two appointments with the fertility clinic, and to not pursue other options with a biological child. Ultimately we thought, why spend X amount of money on an uncertainty - when there will be a guaranteed baby who will need a home. It was as simple as that. Like I said before, I was already wanting to throw in the towel, I couldn't imagine enduring more months of the "waiting game" torture. 

  Neither my husband or I can remember who brought up adoption first. I remember us being equally excited, we had restored hope! We had just bought our first home and we couldn't wait to bring a baby into it.  We met with our attorney about 2 weeks after the fertility results. We both were drawn to private domestic adoption. A week later I ordered the crib - Pottery Barn was having a sale, I had to! We began talking about our child again and dreaming of what life would be like.  I'm a naturally impulsive person, but I feel like something was pulling me to move quickly, like I couldn't prepare fast enough. 

  We got the call about 10 weeks later, we had a Match! This was CRAZY fast! I don't think I've ever been so nervous to meet someone (I'll elaborate on another day about all the emotions of the Adoption Process and how to best prepare yourself).  After meeting the Expecting Parents in July, we knew we had a baby girl due in September. We had always loved the name Finley, and prayed that they would choose that to be on her birth-certificate, as her given name (and they did).  We continued to best prepare for baby girls arrival, and she came two weeks later and was 9 weeks early! 

  Meeting our tiny miracle was unreal.  I was blinded with love and my husband was more aware of the complications that could potentially come with her being so premature. We went through all the emotions the next 5 weeks- signing adoption papers and gaining legal guardianship, seeing our daughter's birth-family every day, dealing with social workers & nurses being so confused with our open-adoption. 

  We learned right away that society doesn't instinctively understand open-adoption, and that not everyone supports it.  One of the hospital's social workers legitimately made me feel like we were trying to steal this young woman's child.  There's a whole world of adoptive-mom-guilt I've learned about, it just comes with the territory.   

  I'll never forget our first morning at home with her.  We sat on the couch sipped coffee and watched our daughter sleep in her little monkey bouncer, I obviously didn't sleep at all that first night- lol. We had 2 weeks knowing that she was coming, but spent months dreaming and preparing for her.  It has never felt foreign to us, we see her as ours and as theirs.  We continue to do visits and communicate with her birth-family, we view them as our extended family.  In our experience everything aligned perfectly.  

  A year later we finalized our adoption. This was the most amazing court experience ever, the state declared her our child. We became her legal parents. It was the most surreal of emotions signing that birth certificate. I'll never forget Her birth grandma telling me when Finley was first born, "this child is yours, she may have been created by these two- but she was always yours."  Talk about emotional. Words cannot describe what her words mean to me. 

  So when I meet people, and they ask me "why adoption?" I feel like it's a loaded question.  How can I possibly sum up this whole story into one quick response here in the grocery store? I can't. Instead I say, "because we were meant to." 

Wednesday, March 16, 2016

A Letter to Myself, Before I Became a Special Needs Parent

I think everyone would agree - the worst thing about waiting - is the not knowing. You sort of have to suspend yourself in limbo. You look forward to the day you get the answer. It's torturous holding your breath until that moment comes, isn't it? It can be anything; a job, a loan, medical results, a conversation... but ultimately you have a sense of peace knowing the specific time frame you will be waiting? Right?? Like, I just have to make it to Friday, "then I'll be ok." 

Well I've learned, with Cerebral Palsy there is no Friday.  There is no date of cure. There is no day where you wake up with resolution. There's just the day that you realize you have become content with uncertainty.  

This day hit me this past Monday, when I was in the waiting room about to check out of one of Fin's Specialist appointments. I used to drag on each appointment as long as possible, (ignoring the body language of the Dr. as he back pedaled towards the door) asking so many questions and relying on the answers to bring me comfort. I needed to hear things over and over and I would leave feeling that "if I could just make it to the next appointment, then I would be ok." I could survive the in-between. Something was different this time. I was smiling and not crying, I had no questions, and I left feeling as though it was just a regular checkup.  This doesn't mean I've lost my mojo. There's a lot of fight in me.  It's more like my brain just switched to the next level. You may have read my "wait scale" post, this is a newly discovered mode for me.

Fin was a preemie that suffered brain-bleeding and we started therapy when she was 3 months old. That's when my eagerness began and my ability to cry at the drop of a hat started.  An undiagnosed child is a cause for high emotions and will cause any parent to be extremely tense or fragile.  Though, I remember being fearful of the official title stamped over my daughter's medical records. I was scared but thought, "If we only had a diagnosis, then it would be ok, because then we could have a plan of attack." Attack.. That's how I felt about it, as though it was something I could fight off completely. Then the diagnosis came. Don't get me wrong, it brought a huge sigh of relief, but I found myself looking forward to each appointment thinking somewhere it would somehow change. The pressure I put on each one, lead to increased pressure on the next.  I say pressure, because it feels like there's an elephant on your chest and you won't get that full amount of air in your lungs until you get your answer or reach the goal. I realize now that I was sprinting - ignorantly. And this is a cross-country run. I now know why some of the other parents I met didn't seem to be "full of hope" which I perceived to mean that they weren't trying to better their children's life and they had settled. Oh, foolish me

I met some really inspiring parents that gave me unsolicited tips or advice, I knew they could read the fresh dose of fear written on my face.  At therapy one time I had a mom tell me, "It ain't easy, but my motto is- if your kid is smiling, then you should be too." Looking back I can't even bear the thought of my baby smiling at me knowing I was fighting back tears of what could be. I wish I could have a chat with myself from 15 months ago, pre-diagnosis.  I'd say;

Hey mama,
Life is going to get hard- but it's going to be okay.  Parenthood is going to look different for you compared to your friends.  It could always be better or worse.  Be grateful in each moment, even the ones you feel 100% alone.  There's no one to blame, and no one is blaming you.  There will be a diagnosis, odds are many other labels, titles, and words will enter your life. Get comfortable with them, but don't let them dim your light.  Watch your baby girl grow and don't worry about everyone else.  You are on a unique road, don't expect others to understand it. Some days you'll want to be treated the same, some days you'll want them to know that life is different for you and your family. This is the path of a special needs parent. Those words "special needs" don't need to scare you either, I know you never thought they would be used to describe you.  While they don't define you- you will find comfort in them. It's a journey that you will take one step at a time. You'll learn to live in the now, and in time you will discover the beauty that was created amidst this pain. You will adjust to the ups and downs and the possibility that today might be worse than yesterday, but tomorrow will be better. You won't let this rollercoaster determine how you treat others, and you will certainly teach your daughter the same.  You won't merely "survive" each moment, you will make the most of them, after all this life is what you make of it.  You will celebrate every tiny miracle each day brings, and find yourself becoming best friends with your daughters many therapists . On the days you feel defeated, you will find a moment of joy and forget the whole day was challenging.  You don't need to feel guilty for feeling tired some days, you're human. Her progress doesn't solely rely on you, she will go at her own pace. Push her, but allow her to enjoy being a child. Follow her lead & be strong for her.  Don't compare her life to others',  it calls for a completely different set of rule.   Learn to adapt quickly, learn to speak up for her. You can do this, you can be your angel's backbone when she is weak. While you can control many avenues in your life, this one isn't meant to be controlled.  Her life is beautiful. Nothing can take away the love you have for her.  Nothing! Don't beat yourself up about trying to make everything perfect or easy for her- she's a tough cookie. You will never "fix" the cerebral palsy, but you can teach her to adapt to the best of her capabilities.  You won't let CP own her.  While you try to teach your daughter the smallest of tasks, she will be teaching you about the big picture. So, hold on tight and be prepared for the most amazing chapter of your life. 


Tuesday, March 1, 2016

What does Mild Cerebral Palsy look like?

The following scenario has become an - almost daily - occurrence. My daughter and I will be out and about, running errands, shopping, what have you, and we get the looks.  I like to think it's just because Fin is so cute. It's not just a regular stare, there's a curious expression behind it and I can feel when someone is about to engage me in the conversation.  The one that starts with, "How old is she?" (Which they are asking me because either I'm assisting Fin with walking or she's using her Kaye-Walker.)  I say, "She's 2 and a half."  Like clockwork they respond with, "Oh really? Why can't she walk? She looks totally normal, you would never know something was wrong with her."  I always smile (some days while fighting back tears) and look them in the eye as I decide on my response.  I've said every different answer a special needs parent dreams of saying, it just depends on my mood that day; "Oh... and what does normal look like?" "Ha! Well thank you for the compliment?" "Aww, thanks.  We're working on it." Like a deer learning to walk, I'm learning to walk in my role as an advocate.  I realize these responses don't help anyone, and usually they just make people feel terrible.  People mean well and I understand their intention.  My child does not look stereotypically disabled.  Which leads me to believe that its not common knowledge to know what someone with Mild Cerebral Palsy looks like.  What do they look like? If it weren't for medical devices would anyone be able to tell?  You simply cannot judge a book by its cover.  I took this search to my Mild Cerebral Palsy Support Group and asked them to share pictures and a little background on their kiddos.  I was blown away by the amazing responses and just how different everyone's situations are.  We have so much to learn from each other in this life.  My hope is to bring awareness to the Mild CP community. Did you know that Cerebral Palsy is the most common motor disability in children? It affects approximately 3 live births out of every 1,000 in the United States. 

Cerebral palsy (CP) is a disorder that affects muscle tone, movement, and motor skills (the ability to move in a coordinated and purposeful way).
First, meet sweet Ava! She's 7 years old. Diagnosed at 4.5 years old with spastic Hemiplegia. Ava is twin 'B' born at 38 weeks. Ava was always developmentally behind and her mother suspected something but the Pediatrician would brush it off.   At age 4 she was still having frequent falls and still struggling with speech and social development. They were referred to PMR Doctor who confirmed Ava's diagnosis by MRI.  Her Mama writes, "I'm so proud of her. She wants to do well and works so hard in school. Areas that are affected are behavior (ADHD), balance, stability, and endurance, learning and speech . She has been serial Casted and wears AFOs. She is in mainstream school but is pulled out twice a day by her special Ed teacher. She gets therapy in school PT, OT, and speech as well as privately after school 2-3 times a week. She is my hero and my Life!"

Meet Stevie, she's a 2 (soon to be 3) year old ball of sass! She was born at 30 weeks after her mom spent 2 weeks on hospital bed rest because her water started leaking at 28 weeks. Weighing 3 pounds 11 oz, she spent 5 weeks in NICU until she reached a healthy 5 pounds.  Stevie was not reaching certain milestones and the pediatrician would not officially diagnose her until 1 year. She was referred to a neurologist and was diagnosed with Mild Cerebral Palsy at 13 months old. At 14 months they started Early Intervention with Regional Center. Mom writes, "This was the best decision we had ever made. I truly believe Stevie is where she is today because of this program. A month into therapy Stevie was rolling over. Although she never crawled, she would scoot. She received Physical Therapy, Occupational Therapy and Speech. Stevie started walking unassisted a few days before her 2nd Birthday. Now that Stevie will be 3 next month we are transitioning out of the Early Start Program and into our local School District. Because of therapy, Stevie is so much more confident even though she has always been strong-willed. Stevie may have CP but this does not define her and definitely does not hold her back." 

Meet this Mommy's little "Monster" who is almost 3 1/2 years old. This little guy was born 10 days early.  At 20 months old he was sent for an MRI, he wasn't walking and could only communicate through sign.  By 25 Months old he was walking in SMO's (Foot Braces).  He is now trying to run! His mom writes, 'we were originally told to expect him to rely on a walker or device to walk and that he'll only use sign language. Well he proves them wrong Daily. He is my hero and I am so proud. He is now using 4 word sentences and goes to pre-k."

Meet this Mommy's Perfect Son, who is 6 years old. He was diagnosed at 6 months old and that's when he started wearing his glasses. He began to sit-up, roll, and crawl by the age of 2.  He started walking, eating food, and talking at age 5.  His Mommy writes, "I am very blessed that my [oldest] son is now doing a lot of things on his own."

Meet sweet Callie who is 2.5 years old. Born at 36 weeks, due to preeclampsia issues with mom and was diagnosed with Mild CP at 14 months. She's worn glasses since 6 months old and walked independently around 18 months. She currently wears AFOs for toe walking. Mom writes, "Callie loves people with all her heart, she can light up a room with her smile. Raising a child with Mild CP may look difficult to others, but to us it's our normal."

Meet Mason. 32 week preemie, twin 'A'. No issues in NICU except growing & learning to feed. At 4 months old he started private PT for torticollis (Right side, which we now believe was CP). At 8 months old, he still could not roll over and had very high muscle tone. Also kept Right hand in a fist much of the time. He was Diagnosed at 10 Months Old. He is about to turn 1 and can scoot on his butt, pull to stand, and is starting to babble more. Mom writes, "He has trouble feeding himself with his Right hand and is still very "tight" but most people would never notice anything different about him."

Meet, Naomi.  She is 2 1/2 years old.  She suffered a brain-bleed at birth.  She was diagnosed at 4 months old with mild left hemiparesis. She didn't crawl, but could "creep" or scoot around. At 14 months walked assisted with ankle braces "AFO's". She wore AFO and SMO braces until 28 months old and is now doing fairly well without them. She runs, walks, and climbs to keep up with her two brothers. Lots of bumps and bruises, lots of falls. Her coordination is affected by her CP, and so is her endurance. Mom writes, "Luckily daddy doesn't mind carrying her when she gets tired of keeping up with her siblings. Speech has been affected by her CP, and she works hard to make her wants and needs known."

 Meet 3 year old, William. He wasn't using his left hand as much but met his milestones. We ended up getting a diagnosis of mild cp at 18 months old. Confirmed by MRI that he had a perinatal stroke. It effects his whole left side, but that doesn't seem to hold him back!

This is Benjamin! He was born at 39 weeks and weighed 7 lbs. 4oz.. He had a MRI done at 20 months because he kept his left hand in a fist almost all of the time and his left leg didn't act the same as his right. We suspected something was up much earlier, but got some pushback from his pediatrician. He sat up at 6 months, crawled at 9 months, and walked at 16 months. He is only affected on this left side (arm and leg) and has no other delays. He is 4 now and super smart and funny. 
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Sweet Noa was born 10 weeks premature, weighing 3lbs 4oz due to placental abruption. She stayed six weeks in the NICU and was intubated for the first two days. She was treated for a heart murmur and was a "feeder/grower" for the majority of the time. She had a few "spells" and was kept on caffeine for 5 weeks. At 1 year old, she still couldn't sit independently. Our doctor reassured us repeatedly that she was just behind. I pushed to get into a neurologist where she was quickly diagnosed with spastic diplegia. She has worn glasses since 11 months and AFOs since 15 months. She is 2 now and starting to crawl. She is incredibly ambitious and so funny. Cognitively she is fully capable and verbal. Her fine motor skills are beginning to catch up to her age. Mama writes, "Her resilience is jaw dropping and I admire her greatly. She is being fitted for a walker soon. Most days she wakes up and yells, "Shoes! I walk!" We look forward to seeing what she will surprise us with next."

This is Josiah! He is a 29 weeker, who along with his twin had a traumatic birth. He had a grade 3 brain bleed that eventually resolved but left some scarring. He was diagnosed with Mild Atypical Hypotonic Cerebral Palsy at 20mos old. He struggled with head control, didn't sit up until 12mos and couldn't bear weight on his legs until he had AFOs at 11 months old.  He took independent steps around the 16 month mark, and now at 28mos he wears AFOs to help with his pronation, foot drop, stability and endurance. He also has a weak core so he cannot sit up straight for too long. Mama writes, "he's happy and can keep up with his twin brother for short bouts and then he takes a break and is at it again! He's my heart!"

Meet Aiden. He was born at 35 weeks and had a brain bleed that was found during a routine head ultrasound. A follow up ultrasound 5 weeks later found more fluid in his brain. His neurologist ordered an MRI, due to favoring a hand, spasticity in his hips, legs, and ankles, and low muscle tone in his core muscles.  At 6 months old his MRI confirmed a stroke at birth. The stroke left holes in the white matter of his brain and created PVL. Through hard work and lots of therapy Aiden walks. He still falls a lot and has coordination problems.  Aiden is non-verbal and has been diagnosed with mixed expressive/receptive speech disorder, as well as, a language delay. He also has serious feeding issues. He wears bi-lateral AFOs to control toe-walking and sees pt/ot and speech therapists weekly.

This is Laney.  She's just about to turn 4 years old. She has mild right hemiplegic cp. She's affected almost entirely in her right leg. She's not as fast as her peers and tires more easily, but other than that she's not much different from other kids. She's a twin and was born full term with an uneventful delivery. We didn't have a diagnosis for her until just before her 3rd birthday. My concerns about her gross motor issues were largely ignored. It took a lot of follow up on my part to get her diagnosed. Her neurologist believes that the stroke which caused her hemiplegia, happened during the first trimester of pregnancy. I suspect it had something to do with the fact that she had a single umbilical artery.

Meet Rowan.  He was born on his due date at home as planned, but lifeless at birth. After a week of seizures, sepsis and organ failure in NICU with moderate hypoxic brain injury, he was diagnosed with CP. Now, at almost 2 years old he walks independently and can nearly run, even jump!  He struggles with coordination and speed.  He also struggles with gross and fine motor skills.  He has no cognitive delays and says many words together. Unofficial diagnosis is "right-sided hemiplegic CP, level 1 on GMFCS scale."

This is Madilynn. She is 18 months old.  She was born full term, with many complications. True knit, chd, meconium aspiration, collapsed lung, hypoxic, hppn. She had her heart repaired at 19 days old and got MRSA. The MRSA went sepctic, which requires another OR visit for broviac line. She stayed in the NICU for 6 long weeks, and feeding continued to be an issue. She has no tube, but still has major feeding and swallowing.  She also has speech problems. First neurologist diagnosed her with dyspraxia. She is hypotonic, right sided weakness, early hand preferance. She did have an MRI at 2.5 weeks old which was clear. She has a swallow study this month and a second opinion by another neurologist.


Meet my Fin.  She was born 9 weeks premature, which resulted in Brain Bleeds.  It was a long journey to get her official diagnosis, at 15 months old, because her Pediatrician and Neurosurgeon brushed it off.  She was delayed on her Milsetones, but one by one she continues to achieve them all!  She has ZERO intellectual disability, so she can understand when someone treats her differently.  She loves her Dance class and even rides horses as part of her therapy.  Walking Independently is our next big hurdle, and every day she is - literally - one step closer.  She motivates us to work hard for what we want, and to never give up hope when the "going gets tough".  Her sweet spirit is simply the best & she rocks our world in the best way!