admitting discouragement but not defeat

Today in a conversation I spoke words and conveyed an attitude as a mother for my child for which I am not proud.

"He should be walking by now. My arms are sore from carrying him everywhere." As soon as I said the words I wanted to hit reverse and put them back in my mouth or better yet delete them from my train of thought, from my heart. These words, the frustration behind them did not come from the beautiful part of my mother's heart that fosters and nurtures. This sentiment, this feeling came out of my own selfish need for progress, even more so out of frustration and the need for relief, respite.
Caleb took his first steps over a month ago. Since then he has taken a total of seven steps on his own, most often refusing to walk or even try. In that time frame he also spoke his first words, "dadda and mamma." We have also heard "Sissy" and what sounds to me like "Nca", for Seneca I believe. The words are few and far between. My ears are fine tuned to hear babbling and cooing or actual vocabulary but often hear screeching instead. He is one stubborn little boy who chooses to do things his way or no way. Yes,this sounds exactly like me and I know his tenacity is part of what has kept this little boy fighting against all the odds stacked against him. It isn't easy to always celebrate the tenacity when it manifests itself in jelly legs and tantrums or outright refusals to cooperate. I've been discouraged lately; even had late night and early morning confessionals to close friends questioning my stamina, my patience, my endurance, my mothering.

The future right now seems daunting to me. In the last months we have heard new words, new possibilities for surgeries, new treatment options. We have started new therapies, added more to our day and our week. Just yesterday a nurse called to move up some of his testings because the doctor was suddenly concerned about his development. New words like autism, like plateaued development, words are also being reintroduced, recirculated: lifelong disability, brain damage. I love words, I embrace them, enjoy studying the meaning of words and how they play off of each other, mingle,express ideas and emotions. Right now though I would like to shut the words out; not have them floating around in my head. Also at this moment the words that most often come to me are tired, angry, frustrated.

Tired of waiting, tired of answering questions, tired of hearing cliches, physically tired from therapies and appointments, tired of carrying my baby boy who is now a toddler, tired of battling him when I just want to cuddle him.

angry at doctors predicitions and pronouncements, of the callous way they throw things out that aren't certain, of how they encourage me to prepare myself, angry at comparisons, from others, and from my self. angry at how my life has changed so much.

frustrated in this cycle of waiting and hoping, frustrated that my role as a mother is more challenging than it has ever been, frustrated in others judgement and abandonment or denial

I am also angry and frustrated at myself for venting, for being honest, for putting my frustration out their voiced in a way that it sounds like criticism of my son. This is not the place I want to be in right now. Another few months of waiting, of wondering, of watching. May, June, July...we have appointments and tests each month. Each month we will learn more and more. It's like putting a puzzle together slowly. Each month that passes his doctors and therapy team seem to see as a marker or an indicator for problems, underlying issues in his development. They keep saying by this time he should be doing this, doing that. And I want to say just stop, stop doubting my son. He beats the odds, he fights. Stop discouraging me. I am not ready to be realistic because nothing about my son is realistic, he was born breathing on his own, screaming even, he has my fight in him and his own.

I love spring, I love the freshness of it, the hope of it. The chance for rebirth in flowers and trees, for growth, for beauty. When what seemed lost or stark is painted in a new light. I feel the need for that in my life right now.

Siblings

I took all four of the kids to the zoo yesterday, by myself. It was a beautiful spring day full of sunshine and laughter and only a little bit of whine and bickering. It was Caleb's first trip to the zoo, a place I have always loved to go, and he loved it as well. He is such an interactive, engaging social boy, he ate up the crowd, the activity, the interaction. The girls were sweet and helpful and excited to see their own favorite animals and ride the carousel. I thought I might become overwhelmed with keeping track of all of them, handling their needs without becoming grouchy myself but really it was lovely.

The only hard part came when others would remark on Caleb's cuteness, ask the expected question you ask with a baby, "How old?" When I would answer with 19 months, they would look startled or surprised and even a few wanted to know why he wasn't walking or talking yet. One lady in line behind us at the carousel, even suggested if I just put him down and didn't cater to him, he would walk. Some people, right? Oh I see the babies all around younger than he, laughing, babbling, reaching for things, toddling, standing alone, walking. Even just a few weeks ago, the comparison would have made my heart break, sink further into my chest into despair, envy. But to see him yesterday, his delight in just sharing the day with his sisters, his easygoing, engaging smiles to me and strangers, I couldn't despair. I couldn't be jealous. He has a harder road, more of a struggle but he is my delight. This sweet little stubborn boy who works hard, and loves even harder. He stood up, supported of course, at the aquarium, intently watching the manatee and the fish swim by. Excitement and joy in the simplicity of nature, of fish swimming by and waves and people all around. He leaned back into his big sister's arms and reached up to touch her face and it made me want to cry. I am so blessed with children who love and support each other, rely and encourage one another. The girls took such joy in just showing things to him.

It's been a hard adjustment to make, this new status of a special mom. I struggle with my own inadequacies and fears often. Am I capable to provide everything he needs, the girls needs? What about my own needs? I struggle with frustration and misunderstanding, with feeling overwhelmed and alone, drifting sometimes. But yesterday I caught another glimpse, another reminder of hope and maybe even provision.

I have siblings who have seen me through the rockiest times of my life, shared in the ups and the downs. Yesterday I saw my children demonstrate their own bond, their own willingness to love one another and support each other. It's a little bit of a relief for me. I do my part as their mother and I also do my part to encourage and not halter their bond. I can relax a little in that because I have my own sibling track record. My siblings are some of my closest confidants, my greatest cheerleaders, and also the truth tellers of my life. We can annoy each other, rarely am I the cause of this, guaranteed, but in the end we are in each others' corner. I see this with the girls and Caleb. My goal is to continue to foster it and not impede on it.

My girls have this selfless love for Caleb, it is truly an amazing thing. I hope we can always find the balance and not fall into the trap of catering to Caleb too much but for now I am so thankful for their sweet, loving hearts. I am a very blessed girl.