Disappointment

My son turned two years old over a month ago. It has absolutely been the longest two years of my life. Even before his arrival, he was making life difficult. The night of his birth, he gave me a glimpse of what life would be like. 

With my previous four hospital deliveries, the newborn nursery wasn't a "service" I was interested in. I wanted to hold in my arms the precious little bundle I'd carried in my womb for so long. With James, it was, unfortunately, no longer available - the hospital where I delivered had gone to an all "rooming in" policy, meaning that unless Mama was really sick or had just going through a surgical delivery, Baby stayed with his mama.

After a very long final stage of pregnancy resulting in extreme exhaustion, and a very intense labor, a 10lb 10oz, almost 2 ft long baby arrived. The nurse said JJ was so difficult to deliver that if I'd had an epidural, he would have been delivered by c-section! Because of complications with the delivery, JJ was whisked away by the NICU team and I was so tired, I barely even noticed. Hearing his first cry a few minutes later gave me the assurance that he was alive. No one seemed overly concerned, so I was pretty confident he had all his fingers and toes. Beyond that, I didn't have the energy to care.

When the nurse brought my precious (not so) little baby and laid him in my arms, I needed help to hold him - I was that weak. Honestly, I remember very few details of that evening, which is probably better. But I do remember, after we'd been moved to the "Mother-Baby" side of the maternity floor, how desperately I wanted sleep and how uncooperative my son was. Finally, I woke Chris up (why is it dads can fall asleep so easily after a baby arrives?!) so he could take care of JJ while I got some sleep!

The next seven weeks were spent in frustration and desperation, trying to figure out how to help my sweet little man quit crying and for both of us get some sleep. It took almost two months because, as a mother of many, I knew babies cry. But, when when we finally went to the doctor, it turns out he wasn't just crying! He was suffering. 


The doctor was great. He immediately assured me that it was wise to bring my son in, ordered a variety tests, and prescribed a couple of very helpful medications. As it turned out, JJ had very severe reflux, so much so that the radiologist commented on it during one of the tests. 

Thus began a very frustrating and exhausting journey, that continues today. And as a result, I missed out on all the fun parts of having a new baby. It wasn't fun, he wasn't cute, and we didn't treasure moments. JJ cried almost constantly, unless he was sleeping, which didn't happen nearly often enough. The car caused particular distress, so we didn't drive him anywhere he didn't need to go for months, which meant we didn't do anything as a family, for months. The baby swing was torture; he screamed until we took him out. One of my daughters discovered a trick to getting him to go to sleep, so we swaddled him, for eight months! Even so, he had to held for any quality sleep. Actually, that is still true.

It didn't really occur to me that JJ was missing milestones until he was about six months old, and he wasn't doing anything he was supposed to be! We figured it was because we held him all the time, due to his reflux and sleeping issues. The specialist informed us that it wasn't due to being held all the time; it was due to "hypostatic encepholopathy" or Cerebral Palsy, low muscle tone (which affects EVERYTHING), and right-sided weakness. The physical therapist also noted general low muscle tone and issues with "proprioception." More diagnoses, more visits with specialists. 

Added to this confusing and very overwhelming mix was frequent illness. JJ was hospitalized with hypothermia secondary to immune insufficiency (though he does not appear to have an actual immune deficiency), treated for pneumonia twice (the first time at two and a half  months), on antibiotics eleven times and hospitalized for the removal of his adenoids, all before he was two. Between visits to doctors and therapists, and visits from preschool teachers,it was crazy. 

Now that JJ is two, and very much NOT a baby (he weighs 36 pounds), I am realizing just how much we've missed. And, I'm disappointed. Disappointed that rolling over was an exercise, that crawling was a task, that walking took months of practice. I'm disappointed that I didn't get to watch my precious little baby sleep in his cradle or rest quietly in my arms. I'm disappointed that I have missed memories of my other children over the last two years; that is time I can never get back.



Life is not over, however, and I can still make memories! So, amidst the disappointment and frustration is a firm resolve to live life differently based on what I've learned, and to figure out how to make life an event instead of just a task. That is, by itself, a worthwhile lesson to learn. 

Hidden Treasure

Sometimes, when life is really difficult (like when babies are puking on you, in the middle of the night, multiple times), it is just not fun to be a parent. Frankly, it really stinks. It isn't much more exciting when you have a "heart-to-heart" conversation with your teenage daughter, as you are trying to go to sleep, or when you completely loose it and let your children know what you really (yes, really)  think, loudly; very loudly. 

Parenting is a continual experience of being at the steepest part of the learning curve. Each day is a new day, and no matter how long you've been at it, you've never had kids this old before!

But, in spite of the harsh reality that parenting isn't always (or even mostly) what it looks like in those darling Norman Rockwell paintings, every moment truly is special. People may disagree with me, but having the unique perspective of parenting both older toddlers and teens, I can say with confidence that even the most difficult moments hold hidden treasure, for those who are willing to look. And, I have had some very difficult moments over the last two years.

It is far too easy to take for granted and be distracted by the challenges that go along with parenting; the crying, the tantrums, the messes, the chaos. But, not every story has a happy ending. A friend's daughter died very unexpectedly, from pneumonia, just last week. Instead of planning for their daughter's graduation, her parents are planning a funeral. I'm confident they'd much prefer all the challenges and struggles they faced when she was alive to the brutal finality of laying her in the grave. 

Yes, it is difficult to deal with the challenges of parenting young children. Yes, it is exhausting. Yes, it stretches you beyond what you ever imagined you could be stretched, and lays your weaknesses and inadequacies bare. But, don't disregard, or spurn, the encouragement and perspective of parents who have walked this road longer than you have. They know, from experience, that days are long and hard, but years are far too short.

Oh Grave, Where is Thy Sting?

Ten years ago today, my sister's earthly existence ended. Her body began to return to dust, and our opportunity to enjoy her company was over. But, for those of us who believe in the God of the Bible and His plan,  death is not the end. 

Paul, in a letter to Corinthian believers, penned the words "Oh grave, where is thy sting? Oh death, where is thy victory?" (1 Cor 15:22 KJV), referring to the reality that death does not have the final word and followers of Jesus can look forward to something beyond the grave.

On this tenth anniversary of my sister's death, it is a great comfort to know that the grave where her body lies (or what is left of it, after this long) is not her final resting place. It takes the sting out of her loss, to a great degree, because I have the hope of  seeing her again.

Some people will read this and think I'm crazy. Some who read these words will shake their heads at my ignorance and reliance on fairy tales and fabrications of days gone by. You can enjoy your cynicism all you want to. I'll not try to argue with you or change your opinion. That isn't the point of this post.

The point of this post is to celebrate my sister's life, and to acknowledge as publicly as I know how that I have hope! Hope of being reunited with my sister, hope of seeing my grandparents once more, hope of snuggling in my arms the baby girl who was delivered to Heaven before she took her first breath of air. 

I have hope.

And that is a very sweet thing.

Hope made visiting the cemetery bearable. Hope made remembering my sister's favorite things precious. Hope made celebrating a possibility, instead of sinking into a pit of darkness and heartache over my loss. Hope made today special, instead of miserable. 

Don't think my eyes have been dry, however. They haven't been. Don't think that I'm unaffected by my sister's death. That simply isn't true. My heart aches with all that has happened over the last ten years that we weren't able to share together; the babies she never  held, and who have never been held by her, the Christmases and birthdays she has missed, and the memories we've made without her. 

It isn't easy to recognize that the grave has lost its sting. 

But it has. 

And on this anniversary, this "Golden Birthday" 

of my sister's arrival in Heaven, 

I am choosing to celebrate what her life has been and what we will enjoy together someday.

Milestones and Mistaken Expectations

My son hit his milestones on time for the first time since his birth. It was an exciting day. First, his preschool teacher came and did an evaluation; he was right where he needed to be socially and emotionally (even if he doesn't know how to play with other little children his age), developmentally, he was doing just what he should be doing. Yeah!

Then, we saw his physical therapist and his speech therapist; they both agreed that the problems we were seeing weren't significant enough to require ongoing treatment. He was discharged. The orthotist refitted his DAFOs and scheduled a recheck for three months - he may be done with those soon, as well.

All these milestones are very exciting! It is wonderfully delightful to see my son running around, imitating words and phrases, harassing his sisters and telling me "NO!"; in short, to see him being a "normal" little boy. It has been a long time in coming, and (as I've come to realize) by no means guaranteed.

When we began this journey (was it just eighteen months ago?!), I couldn't see past the seemingly endless number of medical appointments, visits to specialists, and therapy sessions. The list of tasks to practice seemed overwhelming, made even more complicated by the struggles and challenges of his older sister (who remains in OT and speech). For some reason (i.e. my innocence and ignorance?) I thought that when all those appointments were done, life would be easier, maybe even simple.

I was sorely mistaken.

Life is not simple. It is easier, because we aren't spending hours in therapy every week, and we understand how to manage many of the issues that drove us to therapy in the first place. But it is not "easy," at all. The issues remain; we just understand how to manage them better. His Cerebral Palsy, however mild, still impacts his life every day. His sensory issues (probably secondary to the CP) cause tears and trauma multiple times through out each day. Even something as simple as changing his clothes causes far too many tears. 

It is exhausting.

This isn't like a cold or the flu; he won't ever get "over it." He will continue to improve, and as the specialist who first diagnosed the CP said, he will do whatever he sets his mind to. But, it will never be easy. It will probably never even be simple. And that, like so many other aspects of special needs parenting, is a reality I wasn't prepared for. This journey has taught me many  unexpected lessons, and I've made so many mistakes along the way (and I'll undoubtedly make more, many more), but I'm definitely learning - lots!

Ultimately, I love my son, and I'm so thrilled with how he is doing. 

Even though I've made lots of mistakes, I'm going to celebrate his milestones, 

and thereby meet some of my own. 

Appearances can be Deceiving

Yes, this is the laundry pile, affectionately known as Mt. Foldmore.

My life is not picture-perfect; far from it, actually. Every day, in my home, you can find things in places where they do not belong. You can see evidence of poor choices. I make mistakes; I say, do, and think the wrong things. I don't look beautiful, I'm not skinny, I don't manage my time right, and my house isn't perfectly decorated.

It is easy to compare myself with others and feel like I don't measure up. Honestly, I do it all the time. I believe the lies that everyone else's house is cleaner than mine, that everyone else's kids are smarter and better behaved, that everyone cooks better than I do, that somewhere someone is doing what I'm trying to do, and they are doing it right.

This belief has been reinforced by the disapproval of others. Whether letting my kids play in the dirt or nursing a toddler in public or homeschooling or having eight kids, I have (or haven't) done what someone somewhere thinks I should (or shouldn't) do. And I make mistakes, often.

Isn't she cute, even under all that dirt?

Recently, though, God has given me opportunity to see things from a different perspective. Instead of comparing the inside of me to the outside of others, He has helped me understand how He looks at me.1 Samuel 16:7 says "...man looks at the outward appearance, but God looks at the heart. " (Marchauna's revised version). I have certainly experienced man looking at my outward appearance and being less than impressed. It doesn't feel good, and even though I know God loves me, I still don't like it.

It has been interesting, lately, though. People I have approved of, people others have approved of, people who look good (at least on the outside), people I have admired as having it all together, have demonstrated that they don't. In each case, specific details were different, but the end was the same; they were living in a house of cards and it fell down around them.

Far from reveling in their downfall, my heart aches as I watch them struggle with the consequences of choices nobody could see they were making. Sometimes, they didn't even realize what they were doing themselves. They had the approval of others because of their outward appearance, but God knew, and what He said is true; you really do reap what you sow.

A dear friend recently told me that I can't compare the inside of me with the outside of other people, because appearances can be deceiving. Until recently, I didn't know how true that statement was. We are quick to compare our insides with everyone else's outside, usually coming away from the experience a loser. The world definitely looks at the outward appearance, and the world can be a brutal judge of what they can see. But, the really important part of a person is his or her heart. Only God can judge that, and He doesn't get deceived by how pretty the person is on the outside. 

To many, this thought is a bit less than comforting. But, when you realize that God already knows what we look like on the inside, He knows how broken and "untogether" we really are, and He loves us anyway, that is helpful. When you realize that He not only knows how broken we are, but that He made a provision for fixing up that brokenness, life gets downright exciting!