Having a child with medical problems or developmental delays forces one to open up so much of their otherwise private life and depend on nearly complete strangers for the well-being of their child (doctors, nurses, and therapists, etc). This was extremely hard for me in the beginning. When we brought Maggie home from the hospital, several of my friends asked me if I was going to have someone helping me with Maggie. I pondered the idea of a baby nurse, but besides being so expensive I honestly did not want another person intruding into our lives. I was so tired of doctors and nurses hounding us with instructions on how to care for our baby. I was so tired of people just around all of the time. I just wanted privacy and I wanted to do it myself.
So for those first cold months of 2010 after Maggie came home from the NICU, our family hardly left the house. And I so enjoyed it! We got in a routine and life seemed pretty good. But then Maggie stopped eating, and her torticollis became more pronounced as she grew. When the threat of RSV passed in April, the doctor ordered us to start the full range of therapies - speech, occupation, and physical therapy.
Soon I was racing back and forth to doctor appointments and therapy appointments and trying to do all the therapy "homework" at home. It was quite normal for us to have 2-3 appointments a day. Soon our quiet life holed up in our tiny house was turned upside down. I became a slave to helping my baby overcome her problems. And it consumed the entire family.
I just never in a million years imagined that she would have this hard of a time. (Can you say denial?) No question I have a skewed perspective. I remember when Maggie was about six months old we were discussing her issues with her pediatrician and he said, "I don't know why, but Maggie is just having a harder time than most 29 weekers." I couldn't believe my ears. Here I was thinking she was doing great for what she had been through. I mean, she was alive, wasn't she? And for someone who was not supposed to have any lungs, she only stayed on the ventilator for 10 days and was no longer on oxygen at six months of age. I thought that meant she was doing pretty darn well.
But now I realize now that most 29 weekers do a lot better than her. I have seen 24 and 25 weekers do better than her in their first year of life, and that is piercing to the heart of a mother who watches her child struggle. But I have to remind myself that those babies had the life-enhancing amniotic fluid throughout their time in the womb, however short that was. Maggie did not. And because of the lack of research, we will never know what kind of impact that had on her start at life.
So it was at our year checkup in November that I officially broke down (not on purpose) in front of our pediatrician about how I just felt so overwhelmed with the constant medical issues. It was then that he suggested we start nursing care for Maggie. Of course, I wouldn't hear of it at first. I didn't want someone in my house. I didn't want people to misjudge Maggie if she had a nurse following her around all of the time. I wanted her to be as normal as possible.
A few months went by though, and life seemed to only be getting harder and not "normal" as I defined it. So we decided to pursue the nursing thing and see if it would help Maggie and me. We went through the tedious process of getting it all approved and finally we started trying different nurses in February. Unfortunately, I kept sending them home because none of them were up to my standards. We would find a an okay nurse and I would spend the first few days teaching her what to do with Maggie (medications, feeding 4-5 times a day through tube, feeding 4 times in high chair, therapy exercises in between). And then she would quit the next day. This happened 5 or 6 times in a row and I started getting offended - I mean our life is not that hard, is it?
Just when I started to write off home health care altogether, a sweet nurse named Jessica showed up. She was young and sweet and instantly loved Maggie. She promised me in the beginning that if she was a good fit that she would not leave us. And she hasn't! Finally after a month of having her come 3 -4 days per week I feel some relief. I feel like I am not suffocating under the pressure of trying to do Maggie's routine all by myself. I am not always at my wit's end and no longer short with my husband (okay, I still am sometimes, but not in every conversation!).
The nice thing about nursing care is that I am still with Maggie all of the time, but my day is not consumed with being, well, a nurse! I can sit down and eat lunch with Mary Lawrence while Jessica feeds Maggie. It's amazing when I realize how much time Jessica spends on Maggie's morning routine of feeding, bath (due to overnight vomit), changing linens, and medications- I wonder: what did Mary Lawrence do for those first two hours of each day when I was doing all of that?
So one more thing I regret about this past year: not putting my pride away sooner so I could get help and give Mary Lawrence the attention she needs. I also can't help thinking that if I had started nursing help sooner maybe Maggie would have been doing better, too. I have realized that nursing care (or any kind of help) does not mean your child will never be independent. It just means they might need a little help getting there sooner.
Which brings me back to my original point about trusting what otherwise would be strangers for the betterment of your child. We have gone through several doctors, nurses and therapists, trying to find the perfect ones for Maggie. Finding the right therapists has been the hardest. We'll find a great and then be saddened when we learn three months later she's leaving (turnover is high in these therapy places). It's hard not to question God on these things. Consistency, please! I want to plead.
But I have learned that this journey of ours is like a relay race. And Maggie is the baton. God has seen to it that she is being passed along to a different health-care provider at just the right time - either when it seems she has hit a wall in her development or the therapist has nothing else to offer. It's hard to move on, but every time it's been for the betterment of Maggie.
Ashley, Maggie's Occupational Therapist, is our latest therapist to move on. We are so sad about it because she has been a godsend in every way. She took over last fall when Maggie's second OT quit, and has pushed Maggie so much. It was her goal to have Maggie sitting up by mid-January (which I couldn't imagine, but Maggie did!). And it was her idea to try the e-stim and even found a doctor to write a prescription for her so we could try it. No one thought it would make a difference, but boy were they wrong! Ashley is moving on to one of the best children's hospitals in the country, but said that Maggie will probably be her biggest accomplishment for the rest of her career. And she's only 25. Is that not incredible?
So of course I sobbed and sobbed as we said good-bye last week. Mary Lawrence cried, too. When you depend so much on someone for your child's well-being and future, you feel like your heart is being ripped in two when they move away.
You see, while this past year has been the hardest of my life I have no doubt seen God's hand in all of it. How perfectly He has selected all of these therapists and doctors and nurses to help Maggie in various ways. How he has taught me to accept help with thanks and grace, and not to be ashamed of it. How he has held our family together in some of the most trying times. How he as humbled me again and again when he has brought complete strangers to my skeptical door, and made them into lifelong friends - who have changed Maggie's life (and mine!) for the better.
(Ashley and Maggie )