I feel like it is important for me to paint an accurate picture of our lives and of who I am, where I am and what I’m feeling. While we are richly blessed and I am deeply thankful for all the wonderful memories, special quality time together as a family, and the day-to-day with this precious baby that I typically post about, that is not the full picture.
The past month or so I’ve been in quite a funk. I thought perhaps it was the changing weather and a string of rainy days. Then I said that maybe it was our “house arrest” as we protect Clara from the germs of cold and flu season. Then I thought it was accumulated tired from a year and half of not sleeping. But the weather is lovely, we’ve been to GA and back for Thanksgiving, and Clara is sleeping through the night. So, those excuses don’t seem to be it. I’m discouraged and I’m overwhelmed. I remember when I was teaching we would get a few weeks away from a break or summer and just feel desperate for the end. We would feel so burnt out and restless and know that both the kids and the teachers just needed some time away to renew and rest before plunging back in again. That’s kind of how I feel right now, but there is no break. Clara has to eat six times a day and I do five of those feedings. There is no long weekend from this job. And the pressure and responsibility is so much heavier than any I’ve felt before.
Clara’s eating is still a daily struggle. There are days (like this morning) when I spend 45 minutes trying to get her to eat and she only takes three ounces. We fall short of the daily need of milk, just in terms of fluid for hydration purposes, often. She is a very long way from figuring out how to spoon feed. Eating is something that comes so easily and so naturally to most of us. I’ve never appreciated the ability to eat. But for Clara, it’s very difficult. And it’s absolutely critical. The tedium of trying to get those ounces in her six times a day is wearing.
My feelings of being overwhelmed and discouraged are magnified by how isolated I feel. I am so very tired of people telling me that Clara is the picture of health. I’m frustrated with people telling me that I shouldn’t worry, or that she’ll get it when she’s ready, or that “this is being a parent”, or that “babies just spit up”, or that they understand.* I should worry. She really might not get it (enter: g-tube). Parenting a child with health concerns is different. When she throws up we’re losing precious calories and ounces of fluid that were incredibly difficult for me to get in her in the first place. And most people simply don’t understand. I’m tired of asking doctors and therapists questions and them not having any answers. I’m tired of washing bottles. I’m tired of pumping. I’m tired of wiping down every surface with Clorox wipes and worrying about every exposure to germs that Clara has. I’m tired of not being able to be normal.
Today we had an evaluation with a speech therapist for feeding therapy. Like so many appointments before, I had great hope that we might get answers and strategies and solutions. Instead, I left feeling like I had gained nothing (Speaking of gaining, Clara has only gained an ounce and half in the last three weeks. It’s not enough.) And as I drove home, I just cried. Here I am finally living the dream that I’ve had my whole life of being a mother, and I love every single minute of the ordinary, but I’m just so frustrated with the challenges that come with this particular child. I know that every child has their struggles and challenges and that motherhood is not a picnic for anyone. I don’t have unrealistic expectations. I’m just saying that this gig I’ve got going on right now is extremely difficult. I usually love challenges. But right now I’m feeling a little worn down and there’s not yet a light at the end of the tunnel.
I don’t write all of this to garner sympathy from you, my faithful readers, or to ask for advice or solutions. I just wanted you to know that it’s not all pumpkin patches and apple orchards. Clara is a beautiful miracle and I am thankful for her life every minute of every day. But this life is hard. It’s hard for her and it’s hard for me. And the truth of the matter is, I am still struggling with this.
So, I’m praying that the burden will get lighter. I’m praying that she will have more and more good days where she eats enough and it doesn’t involve an epic battle and she doesn’t throw it up. I’m praying that she learns how to spoon feed and drink from a cup because in four months that bottle needs to go. I’m praying that she might decide that she can eat while she’s awake instead of me having to sneak in all her feedings while she’s sleeping. I’m praying that she might start gaining weight again a little faster. I’m praying that she stays healthy this winter because I cannot bear the thought of her facing respiratory illness. I’m praying for grace for me and for Clara. I’m praying that I will have a sense of calm and patience when it comes to feeding her instead of the far-too-frequent meltdowns and tantrums I’ve been having lately. I’m thanking God for her strong will, even when it’s causing her to fight me, because I know that same strong will is why she is even alive today. I’m thanking God for all the support I have and the resources that are at our disposal. I’m thanking God for this opportunity to be a parent because it has always been the desire of my heart. I’m thanking God for His infinite wisdom in giving me the child that is just right for me and giving Clara the mother that is just right for her. I’m thanking God for the mothers of other CDH children He has put in my life because they do understand. I’m thanking God for giving me the most patient and loving husband who puts up with my mood swings so graciously. I’m thanking God for the promise of tomorrow, a fresh new start, and another day to work on serving Him, and meeting Clara’s needs. Join me in prayer?
* If you are one of the many, many people who has said any of these things, or similar things, to me - please know that I am not angry at you. I recognize that it is your way of saying that you care and that you do not intend them to be hurtful. I don’t want for you to think you’ve offended or hurt me or feel like I have just singled any one of you out. I hear these things from everyone, including my family. I do appreciate everyone’s desire to problem solve and offer feedback and solutions…. I learned many months ago that people often say the wrong things and that it’s best to try to hear their intention instead of the words that may be hurtful. I’m still working on that….