A little piece of heaven

4.5 years ago when I was given Nathan’s diagnosis a part of me thought I’d never be happy again. How could I? Either my child would die at birth, very young, or live life severely disabled. I’ve never been more wrong in my entire life.

I am thankful for Nathan, just the way he is. I am thankful for every cell and atom in that boy’s body. I am thankful for being mother to one of the sweetest, most loving, most generous spirits on Earth. I am thankful to be chosen to care for and love him. I am thankful that he chose me as his most precious student.

I am thankful for the man who has been my rock, my foundation, for the love of my life who has held me through raging storms and violent earthquakes. I am thankful that he chose me to be the mother of his children, the woman to stand next to him and watch him blossom into the man he is today. I am thankful to be his partner in life, his partner in love and parenting and partnership and joy.

I am thankful for the sprite who graced us with completeness, with fun, with normalcy. Belle, my Belle, my sensitive determined serious wild child who made us a family. I couldn’t be more thankful for our little ohana of four.

And I am thankful for so much more. The heroes and heroines helping Nathan. The wise people who have guided and supported me through my journey. The friends who have cried with us, laughed with us, prayed for and with us. I am grateful to you, walking this journey with us, commenting, calling, emailing, reading silently, sharing yourselves with us simply by being here. I am grateful to the family that loves my kids so much, who celebrate every tiny and big accomplishment, who watch them so we can unwind, who teach them to laugh and bicker and play.

4.5 years ago I thought I could be happy if Nathan was a miracle child who against all odds developed the ability to walk, talk, be normal.

Today I am so thankful for exactly who he is. With his floppy head and hypertonic arms and fisted hands and drooly mouth. Today I am thankful that I had the wisdom to see beyond the constraints of this life and realize that what matters is for him, for me, for all of us to be happy, to become the best we can possibly be within the parameters of our lives.

Today I am thankful. And every day I look around and wonder, I must’ve done something very right at some point in time because I have the most wonderful, amazing, incredible people around me. And for that, and everything in my life, I am thankful.

Dear Belle,

I’m a bit late for your 7 month Bellebration, but it’s been a busy month so I’m sure you can understand! Oh, and what a month it’s been!

This month you visited 2 countries and 6 cities: Sao Paulo, Bogota, Barranquilla, Santa Marta, New York and various cities in New Jersey. You can see pictures of those trips here:

You managed to worm your way into mommy and daddy’s bed. For 6 months you slept in your crib, but after cuddling in Brazil and Colombia with mommy, you got used to it and there was no getting you out of our bed! You also decided that night time is the best time to fill up on breast milk, so you sleep attached to mommy’s breast, nursing through the night. Yes, I know, poor mommy, huh.

This month your development exploded. You perfected crawling and you are now a speed crawler! You started off the month with a gimpy crawl, where you’d use your right knee but your left foot, but now you crawl absolutely perfect and very fast.

You learned how to wave bye bye and how to dance when we sing “Tin Ton, Tin Ton, Tin Ton el bailecito, Tin Ton Tin Ton Tin Ton”. You started playing games with us, including “PeekaBoo” and “A Dormir!”. You started calling food “Ba-ba” and whenever you are hungry you slap the table with the palm of your hands and demand BABA very loudly. You even stole your brother’s food a few times by demanding BABA! Oh, and you stole a few licks of daddy’s sorbet and convinced him to let you try a strawberry sorbet. Oh, and half of your games are in Spanish, so we think you understand both languages very well.

You started saying PAPA and have had an explosion of sounds and have even said a few words! We heard you say “agua” and “more” and “caca” and have all sorts of new sounds you’re playing with. MAMA is old school by now.

You have decided crawling is boring and all you want to do is stand and practice walking. Crawling is simply a means to get to the next place for you to pull up and practice walking. Your balance has gotten so much better this month, and we’ve even seen you let go of both hands and stand up by yourself for a few seconds!

You terrorized your poor friend Maxx, who asks that you please not come back to see him until you’re all grown up and can play nice.

You have become the queen of the mall playground. You love going and love being admired by all of the parents there who are amazed to see such a little baby doing so much. You even had your first fight. A little boy pushed you when you were in the tunnel, and you got mad at him and started babbling angrily in his face. And you went back to the tunnel and when he tried to go through it, you blocked his way and wouldn’t let him through, while letting all the other kids through. Yes, you got your mommy’s temper 🙂

You went to your first MyGym class and to your first music class! And loved it! You LOVED all the instruments and songs at music class, and were amazed that you had so much space to crawl and explore at the MyGym.

You wrapped daddy around your finger a few more times and have fallen recklessly in love with him. You cry if he leaves the room and want him to hold you all the time. Mommy is old news now. Snif sniff.

You went swimming in the ocean for the first time.

You drank coconut milk straight from the coconut. You started eating so many new things, including rice, sweet potatoes, peas, turkey, beef, fish, potatoes, yams, oatmeal, and pretty much everything we gave you, you ate.

You love swinging.

You overcame stranger anxiety. You don’t like being alone anywhere. The other day you were in your play area and everyone was busy, so you started screaming. We brought Nathan down and put him in the play area with you, and all of a sudden you were perfectly happy. Having your brother with you brings you a lot of joy and comfort. He is such a great big brother!

Changing your diaper and clothes is a DRAMA. You scream and whirl and twirl and we ended up chasing you all over the changing table. I think you would be happy being naked all the time!

And sitting you in your car seat…wooof! It’s quite a feat! You hate it and get so rigid it’s almost impossible to have you sit down so we can buckle you in! But once you’re in, you’re happy.

You have your two bottom teeth fully out, and the two top ones are working their way out.

You can grab anything and are pretty good about passing things from hand to hand. You’re still working on the pincer grasp.

Oh and have I mentioned that you are still not sitting? You seemed to skip that developmental stage. Why sit when you can move move move??!!

You are such a strong-willed, determined, active little girl. You bring so much joy to all of our hearts. You complete us. And your brother loves you so much.

Raising Nathan and offering the best that we can, really does, take a village. And after years of searching we’ve found our village. A wonderful village. In fact the most amazing village. The people in our village are super stars. The best in their fields. Kind. Loving. Gentle. They see potential in Nathan. They do their best to support him. Nathan is doing well because of all of them.

If any of you are reading this blog…Thank You. You guys are all AMAZING. We are so grateful for how you’ve helped Nathan.

Here is Nathan’s Dream Team:

Martha – home therapies. Nanny McPhee falls short next to Martha. She is a wonderful caretaker and therapist for our Nathan. She keeps him nourished and well fed. She prays for him. She believes in him. She loves him to pieces. She puts his well being first. She is in charge of his ABR, laser, and home feldenkrais program.

Belinda – his teacher. The most amazing teacher we could’ve found. She works so hard to help Nathan. Her persistence got him to where he is now walking in his gait trainer. She is working so hard on his physical and cognitive development.

Tom – Rolfing. has helped to release much of his spasticity and has helped improve his structure. Has kept his hips from degenerating and has also helped him improve his posture.

Azriel – Medek. Azriel is the newest member of our time and we are most grateful to have him. He is the most amazing PT/Medek therapist I’ve ever met. He is kind, gentle, strong, and has the biggest heart. A truly gifted therapist, and oh how I wish we’d met him sooner.

Leonid – ABR. Leonid is the genius behind ABR. He has been helping and guiding us to help improve Nathan’s head control. ABR has helped to strengthen Nathan’s core and to improve his structure. I asked Leonid if he’d be willing to take the “head control” challenge – could his therapy improve Nathan’s head control. He has such strong belief in the success of his therapy that he said YES. And he was right. It has. Nathan’s head control is so much better. Leonid is truly amazing at structural integration and I believe the very best in the world when it comes to this area.

Kathie – Feldenkrais. Nathan loves Kathie, she plays with him and teaches him ways of using his body and moving.

Cheryl/Eileen – Felkenkrais intensives. Very experienced Feldenkrais practitioners that help Nathan with movement and muscle tone.

Ronna – Aug Comm. Has made communication fun for Nathan and has been helping him find ways of communicating with us through various means.

Natalia – Music therapy. Nathan LOVES playing the guitar and singing with Natalia, and really looks forward to his time with her.

Becky – Horse Therapy. Nathan’s been riding with Mrs. Becky since he was a year old. He lights up as soon as he sees her and just loves to ride his horse. This week will be his first SOLO RIDE on a horse!

Nikki – Speech therapy. Nikki worked with Nathan when he was younger and will soon be rejoining Nathan’s team. She is a supremely kind and experienced speech therapist who really believes in Nathan’s potential.

Nathalie – OT. Nathalie also worked with Nathan when he was younger and will soon be rejoining Nathan’s team.

Dr. Kenny – Immune support. Dr. Kenny really changed Nathan’s health and helped us identify his allergies and bring him to a point of health. She’s also helped us make decisions about his therapies and treatments. We owe Dr. Kenny Nathan’s supreme good health and our shift towards alternative medicine.

Dr. Blumenthal – Reflex integration & DAN. Dr. Blu has been working on integrating Nathan’s infant reflexes, as well as giving him supplements to improve his digestion and helping us with Nathan’s diet and nutrition.

Bonnie – Cold Laser reflex integration. We’ve been following Bonnie’s cold laser program for a few months and the laser has really helped improve Nathan’s muscle tone as well as overall development.

Dr. Osval – G-therapy. Nathan uses G-therapy for overall brain development.

Pediatrician – Nathan’s pediatrician, who is fully onboard with us after the issues we had, is an absolutely wonderful doctor who can always diagnose Nathan and is always helping us find ways of keeping him healthy.

Kathleen – NAET & acupuncture. This is a new treatment we are trying which is supposed to completely eliminate food allergies. Kathleen seems like a very knowledgeable person and we are interested to see how this program works.

Dr Fitzpatrick – chiropractor. Dr. Fitz uses an impulse adjuster on Nathan’s back to help maintain his structural alignment and to prevent scoliosis.

Nkem – Homeopathy. Also new to our team, Nkem has made Nathan a constitutional homeopathic remedy. We are also on the early stages of this treatment and will report on results.

Jason – Orthotist. Jason casted Nathan for his AFO’s, made his swash brace and his HART walker. Another truly gifted, kind soul, and the best in his profession if you ask me. The braces he made for Nathan are PERFECT.

Dr Kay – Orthopedist. Dr Kay is well known in his field and has given us good advice and support when it comes to Nathan’s orthopedic (hip and foot) problems.

Dr Krieger – neurosurgeon. Has kept an eye on Nathan’s shunt.

Some of these people Nathan sees every day, others every few weeks, others every few months. Others work with us remotely to help Nathan. But it’s taken us 4.5 years and experimenting with MANY MANY people in health care to find this team. Nathan’s dream team. The people helping our boy to be the best Nathan he can possibly be.