Milestones and Memories

I have recently come to realize that the importance of milestones and the ways we celebrate them is more for the parents than for the child. These are some of my random thoughts about this.

While Jordan is progressing through her physical milestones at a delayed rate, she seems to be accomplishing things that we didn't know when to expect to see from her. For example, last week during dinner while she was in her portacrib, she stood up and started walking!! Derrick and I were so excited!! We grabbed the camera and took video and pictures! We took her in her bedroom and had her "perform" her new skill for us over and over and over. Even when it was obvious to us that she wanted to be done, we kept encouraging her to walk more and more! Eventually, she wouldn't even let us stand her up and she just kept flopping to the ground and crawling away. We were so thrilled at what she had just accomplished!!!

At 22 months, we have waited a LONG time to see Jordan balance on her own and take those first steps! It was so amazing and exciting to see her accomplish that milestone! However, later when I thought about the fact that many children are doing that same thing at 1/2 her age, I wonder if I am doing everything I can to help her accomplish these things quicker, faster, sooner?? I see and hear from friends about their children who are similar in age to Jordan and what they are doing and I sometimes feel like a failure. I know it's not my fault that Jordan can't do these things, but I'm just not quite sure where and how she fits in. I wonder if I should be pushing for additional therapy for her, or early preschool enrollment, or a different therapist?? Is there anything I am missing and not doing for her??

I receive e-mails from a parenting website that discuss milestones for your child at their appropriate ages. I love reading them for Conner to see what things he should be doing and to give me ideas of creative play and activities. However, I no longer can even read the ones for Jordan. It crushes me to see what my 22 month old should be doing! I feel as though I am reading about someone else's child because mine is no where near doing any of those things and I can't even incorporate the suggestions into her life.

Last night my friend Stacey, who is an awesome photographer (http://www.staceyclackphotography.com/), posted some pics she took of our friend's daughter for her first birthday eating and sitting in her cake!! They were beautiful pics that will leave a lasting memory for them for years! However, as much as I was smiling and laughing while looking at the pics, I started crying because Jordan didn't get to experience anything like this and most likely never will. For Jordan's first birthday she was eating thickened pediasure and I used some food coloring to make it pink and gave her a bowl to make a mess, but there was no cake. I guess I just look at the first birthday as the one where you give your child some brightly frosted cake to make a mess and take lots of pics. We have some pics, but they just seem less celebratory to me. And to intensify this for me, Jordan will be turning 2 in less that 2 months and she is unable to have anything by mouth so I am left feeling empty inside wondering how to celebrate this milestone.

Don't get me wrong, I love my daughter intensely and wouldn't change anything about her! I have learned more from her and through the experiences I have had with her than I could have ever imagined! However, when faced with celebrations and milestones, I am sometimes unsure how to process it all. I don't know that it takes anything away from her, but it leaves me feeling empty inside when I can't do the things with her that I have done with my other children and want to do.

I am having to learn to let go.

It's not easy to put aside the hopes and dreams and desires I have for her and just let her be who God created her to be. It's not easy to put aside the developmental milestones and accomplishments and trust that she will accomplish them in her own time. It's not easy to put aside the traditions of our family and find new ways to celebrate. It's not easy to be the parent of a special needs child.

Recovering from being sick AGAIN!!!

Jordan was sick again about 2 weeks ago. This time it started with her just not digesting her food quickly. Instead of being ready to eat after 3 hours, it took her 5-6 hours to empty her stomach. That turned into cold-like symptoms, diarrhea, and lots of gagging and spitting up. The nurse had me drop the Boost 1.5 and dilute the Pediasure with Pedialite giving her less quantity at each feeding. We also started her on a feeding pump to deliver the food at a slower rate making it less likely to cause her stomach to get upset. We were also able to use the pump to deliver food throughout the night without me having to get up for night feedings. This illness eventually ended up with a pneumonia diagnosis based on an x-ray.

This worked it's way through our family as Conner, then Derrick, then I all got sick. We are now all feeling better and glad to have that behind us!

I was at first unsure what to think about the feeding pump. It seemed like we were going backwards with things. I have since come to see what a wonderful tool this is! In the past, it always took us quite a while to work Jordan back to normal feedings when she was sick. This meant a severe drop in nutrition and hydration for a long time (usually at least 1 1/2 -2 weeks) and often weight loss. With the pump we had Jordan taking much more food during the illness and back to non-diluted food within a week and few days later, back to the full quantity. We are still using it to deliver the food over a 1/2 hr but I will work on returning to bolus feedings this week. It will be nice to have on hand in case she gets sick again.

We had Jordan weighed just this past Wednesday and she was 19 lbs 13 oz! That's almost 20 pounds!! We are looking at moving her into a forward facing car seat probably within the next month. Since she will be 2 in June, that's a HUGE accomplishment for her!!