My Sister’s Keeper

Tonight I watched My Sister’s Keeper. I bawled and bawled. The storyline itself was really sad, but of course it hit really close to home. Especially the character of the mother. It made me think a lot.

Before Nathan was born and I got the diagnosis, I decided he wouldn’t die. I was told he would die at birth, like many many kids with holoprosencephaly do. For 4 weeks I prayed and I prayed and I prayed. And at the end of 4 weeks of prayer, I knew he wasn’t going to die. That day, the day of his due date, I called the OBGYN and told him I was ready for him to be born, because I knew he would survive. So the C-section was scheduled and Nathan was born without any medical complications (he didn’t need oxygen, he didn’t go to the NICU, he was able to suck and swallow, etc).

It wasn’t just me praying. It was people from all over the world. Family, friends, complete strangers. So many people prayed. And the miracle happened.

And because of that miracle I knew miracles were possible. So I decided I would make another miracle happen. I decided Nathan would develop. At any cost. Nathan would walk. Nathan would communicate, through words or a device. Nathan would function.

So I started fighting. I fought the neurosurgeon who would’ve let him die. When Nathan had meningitis and that doctor was being completely negligent, I called him one day. I told him that if anything happened to my son, if my son had any more complications or if he continued to be negligent, he would regret it for the rest of his life. I told him if he made one more mistake, one more error with my son, he would face consequences that he was not going to like. And after that the doctor shaped up. No more mistakes. Nathan got better and since then, I’ve been fighting. The second I walk into a medical office my claws are out. I will protect my son. My son will be healthy. No one will hurt my son. I will give my son the best possible life I can give him.

And perhaps you’re thinking, how arrogant. How prideful. Only God can decide what happens. Or Allah or Buddha or the universe. Powers far far far more powerful than myself. I’m just one little person, with a lot of love.

So when I saw this movie, I saw myself in Kate’s mother. Going above and beyond. Putting one child’s needs above the rest of the family. Completely dedicated and devoted to my son’s well being, to his recovery. To the detriment of my relationship with Owen. To the detriment of my own physical and emotional well being. Doing what I thought had to be done. In my world there were no other options.

And soon there will be another member of this family. And I am already looking into saving Belle’s cord blood so that we can use it for Nathan in the future. And it never even occurred to me to stop and think – if we use Belle’s cord blood for Nathan, and Belle one day gets sick – then what? I can already see how difficult it is going to be to balance Nathan’s needs with Belle’s. With other future little MarceOwen’s. I can already see myself saying, “But Nathan NEEDS this.” “This is too important for Nathan.” “It is important for Nathan’s health and well-being.” I can already see myself fighting with Owen, wanting to go above and beyond while Owen tries to maintain some semblance of normalcy. This is something that I will always struggle with. And today, this movie, gave me an even better view of the battle that lies ahead of me.

I do know that something changed in me a couple of months ago. I stopped needing Nathan’s recovery. I stopped waiting for him to progress to feel happy. I just stopped my willingness to put Nathan’s needs above and beyond everything and everyone else. That was the reason I returned early from Chile. Nathan and I were supposed to still be there today. I had planned on staying until mid March. I wanted Nathan to have as much CME time as he possibly could before Belle’s birth. But one day while we were in Chile I realized this wasn’t a family of 1, it was a family of 4. And there are 4 people’s needs for me to consider. And those 4 people are all equally important. Yes, Nathan “needs” more than we do – in a conventional way. But in other ways “we” need more than him.

I need time to become the best woman I can be. I need time to do things I enjoy, to exercise, to meditate, to play, to let go. I need time to live as an individual, apart from Nathan. I need time with the love of my life. I need a balanced loving relationship with Owen. Owen needs me too. And like me, Owen needs time to be a guy, not just a dad. And then there’s little Belle, whose needs are strong too.

And it was at that time, back in Chile that I “let go”. I “let go” of putting Nathan’s needs above and beyond, I let go of needing a full recovery for Nathan, I let go of waiting to be happy WHEN Nathan gained function.

And in letting go I found the most surprising thing – things could remain just the way they were, and I could still feel happiness. I didn’t have to wait for Nathan to gain head control to be happy. Happiness was right there, waiting for me. Happiness is in accepting Nathan just the way he is. Happiness is in giving myself some time to just be. Happiness is in spending time with Owen and in cherishing our family unit. The past few weeks have been the happiest of my life. And all I had to do was follow the lead of the little boy in front of me, that little boy who embraces life and is happy just the way he is.

When we went to Orange County for Hbot/Suit Therapy, I went for different reasons. I went for the adventure. I went to spend quality time with Nathan before Belle is physically here. I went because I’m crazy like that and enjoy doing things that are a bit “out there”. I went because I’ve always wanted to spend some time “living” in an RV. And a bonus reason was that Nathan also got to receive some therapy. I didn’t go looking for change. I went looking to live. And although I wasn’t able to stay down there to have this experience with Nathan, his dad did, and they are having SO MUCH FUN. But I had to let go first.

As I keep saying, although I do not “need” a recovery for Nathan, I will always continue to fight to give Nathan the best care I possibly can, the best opportunities for development. But nowadays I always ask myself, “At what cost?”. And if the cost is too high for our family, then I will not do it. Because Nathan is okay, Nathan is already happy, and if we’re all falling apart around him for the sake of his rehabilitation, then we are actually harming him more than we are helping him. Because physical development is not more important than his emotional well-being. So my metrics have changed now, and how I make decisions is different.

I write this to remember. I write this because I know that in a few months time something will come up and I will want to drop everything for Nathan’s sake and I will want to go do exactly what I said above that I won’t do. And when I do this, I hope I remember this post and I hope I will come back and read it again and again so I will always maintain this perspective. And if I forget, maybe you will remind me?

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Comments

  1. Jennifer says:

    That is a wonderful post and pretty much is answering some of my questions right now in my life.

    Don’t worry about Belle. Everything will go great. I wanted to do an amino too but then I thought, whatever happens I will love her. I prayed to God the things I wanted in Kayleena and I got that and more.

    I am so excited for you. Your life is going to turn upside when you have this little girl. I can’t wait till you start posting that you don’t have time to post. You can join the club. haha! It’s so excited and I’m happy for you.

  2. sally says:

    And..when you let go, Nathan played by himself on the floor….said yeah & gamp …has a blast with his dad—which is age appropriate on a neurotypic scale-to identify with daddy–

    sending hugs

  3. Tita Tita says:

    I will remind you. Don’t worry.

  4. Melanie says:

    This was a beautiful post, I started reading your blog over a year ago when I was pregnant with my boys. I have twins that just turned a year old and one of my sons was diagnosed with holoprozencephaly and hydrocephalus before birth. Your blog was what gave me hope at 24 weeks gestation that I would have 2 healthy sons. I delivered at 30 weeks and my little Gabe has struggled 6 weeks in the NICU, 5 surgeries, countless tests, and hundreds of thousands in medical bills, thank goodness for insurance. But I have made it, we all made it, their birthday has been my marker for success because the doctors were always so negative about Gabe’s survival, but he is still here still fighting. I had to let go and breathe a long time ago and just put it in God’s hands. Being a single mother of twins is hard but a single mother of twins with a child with HPE is very overwhelming at times. Your blog has given me so much over the last year, through you I found the Carter Center and have just found hope, I pray for you and your family everyday. Thank you

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