A little piece of heaven

Nathan is probably the most content person I know. Most of the time he is happy in his own body, he is happy to be Nathan and this shows through so clearly.

I wonder if perhaps his disability contributes to his contentment. We all have so much freedom that we develop these great big wants and needs. Perhaps Nathan’s limitations have taught him to appreciate everything that people do for him, which make him a content person. He doesn’t demand much, and he appreciates so deeply everything we do for him.

Being around Nathan is so nice, so easy, so refreshing. He is such an example to me, I want to have that level of contentment. It just amazes me that this little boy with so many limitations has more peace of mind than anyone else I now.

What a month this was for our bouncing baby boy! In just 4 short weeks you learned to get around by fully crawling, pull up to stand, cruise on furniture, steal food, and much more.

What a joyful child you are, how full of love and laughter.

This was your first attempt at crawling:

Now you are a perfect crawler.

It all seemed so fast! One minute you were army crawling everywhere, barely getting up to quadruped. The next minute you’d taken off, were crawling on hands and needs everywhere, pullinig up to stand, and cruising. You love to stand up and cruise, and we wonder how much longer it will be till you’re off and running!

Even with all of your new achievements, you continue to be the sweetest baby on the planet.

Eating is probably your favorite thing to do. You’ve become quite a little thief. The other morning, Izzy left her bowl of eggs on the couch. Before anyone noticed, you’d crawled to the couch, pulled up to stand, cruised over to the bowl, and ate the entire bowl. By now you’ve also stolen a few french fries, tortilla chips, crackers, and other things you’ve found on the floor.

What an explosion of development your 6th month brought. We are so grateful to have you in our lives, you are an amazing little bouncing baby boy!

For us it was love at first sight. He came to pick me up for a date, and as soon as I saw him waiting for me downstairs, I felt my stomach flutter and I could see sparks flying. Our first date was magical, I couldn’t keep a smile off my face. By the end of our second date, I remember calling my mom and telling her, “Mom, this is the man I’m going to marry”.

After one year we bought a house and moved in together. We backpacked all around Europe. Got along so well. After 2 years together we were engaged and I was pregnant.

The first 7 months of the pregnancy were a dream, we were so excited to start a family together. Then on my 35th week came Nathan’s diagnosis and the world crashed in around us.

All of a sudden we were fighting for our child’s life. The first 6 months of Nathan’s life were absolutely traumatic, he spent the first 5 months screaming due to his extreme hydrocephalus and his 6th month in the hospital in the PICU with an open hole in his skull (an external shunt). At the end of this period I realized that I couldn’t trust doctors to care for my child, that only I could do it. Thus begun my journey into extreme motherhood.

I read every book I could get my hand on regarding brain development. I scoured the internet for miracle therapies. I talked to as many other families as I could to find out what helped their kids. Nathans life and rehabilitation became my mission.

I forgot to nourish myself. I let go of many friends. I forgot to have fun. All of my energy was focused on Nathan’s rehabilitation, and surviving. I juggled work, therapies, equipment, research. I wanted to give Nathan every single possible opportunity to recover from his debilitating condition. I gave my heart and soul to this dream of helping Nathan.

Owen and I stopped having fun together. Every single penny we had went towards Nathan’s therapies. I was so invested in Nathan that I had nothing left to give to Owen, to myself. Thus, the relationship deteriorated.

We also had different views of Nathan’s rehabilitation. He encouraged me to accept Nathan the way he was, and to simply try to minimize the damage from the lack of mobility. I wanted to help him gain strength and learn to move and control his body on his own. We were confronted with many difficult decisions and we had different views on how to handle situations. Since I was in charge of Nathan while Owen worked, I always fought for my point of view, causing Owen to feel alienated and like he wasn’t part of the decision making process.

Then Izzy was born and we had even more responsibilities and stress, and less time and energy for each other.

Finally, our relationship just couldn’t hold any more stress and we separated. We have been working to improve our communication and things are getting better and better all the time.

If I met someone today who was going through similar circumstances, this is what I would suggest:

– The child should be the responsibility of the RELATIONSHIP, not of an individual parent. Sounds simple, but it’s very profound!

– Don’t forget to take care of yourself! You need to be a whole, fulfilled human being in order to be a good spouse and parent. There’s a reason why they always tell you to put your mask on first before helping your child when you get on an airplane. You have to help yourself before you can help others.

– Have fun together. Whatever you need to do to get out of the house every so often and have fun, do it! It’s essential!

– Cherish the relationship. Don’t let it fall to the wayside thinking that the kids are more important. What’s most important is for the kids to have a family, and that won’t exist if the relationship falls apart.

– Don’t let your disabled child be the focus of your life. Give time to your partner, yourself, your other kids. Your disabled kid should have an equal amount of attention.

– It really DOES take a village. Call in help. Accept help from anyone who offers it. It makes a tremendous difference when you have some time off, time for yourself, time for your spouse. My mom takes care of the kids every saturday night so Owen and I can have one night off every week – it makes such a HUGE difference to us!

I feel so fortunate that things exploded for us. We have picked up the pieces and are now moving ahead with a very healthy infrastructure. We are supporting each other and communicating better. As a family we are all happier.

It’s been a journey, a very painful one at times, but one that I am grateful to be experiencing. I have learned so much! And now we are on the other side, on the healing side, and I am looking forward to what’s ahead for our little family.