Growing

Today I sat in the kitchen with Logan. Lauren was finishing up dinner. As I held him I was scanning my Facebook page on the iPad. Logan has been a little under the weather since Sunday and is on antibiotic nebs. Today his secretions were constant. As I sat with him, I became increasingly frustrated. He was wiggling and arching his back. It was getting difficult to hold him. At one point I lifted him up as he was sliding down my lap and I thought, "wow he is getting heavy".

He then began sneezing. When this happens he usually thrashes around. This includes arching, flailing, and head banging on top of secretions flying from his trach and mouth, holding of his breath, and some difficulty breathing. As I sat in the chair with him during this episode, I became mad at him. I was having a hard time holding him while suctioning. It wasn't his fault.

After that, we went about our evening as usual. Logan's night nurse arrived and we were sitting chatting about Logan and I mentioned how bad I felt about getting mad at Logan. I then started to cry. At that moment I realized it wasn't Logan I was mad at, it was that he is getting bigger. I don't always look at Logan growing up as an exciting milestone. Don't get me wrong, I want him to grow and thrive but with that comes some major adjustments in our life.

It means my ability to cuddle him will get tougher. For those that do not know us, Logan is a cuddle bug. Snuggling seems to be one thing that can calm him and I know it makes him feel safe. Getting heavier also means we are getting closer to needing equipment to move our child. It means at some point, some of our family members will not be able to pick him up. He will become at greater risk for sores and doing therapy with him will get tougher.

I realize I am focusing on the negative, but too bad. I wouldn't be writing a blog if it was sunny and 75 in our lives every day! This is one example of the stress that I feel taking care of a son with special needs. So today I realized my fears associated with Logan growing up from a baby to a boy. Now I can sit with these feeling for a little while and decide how to move forward.

These moments always blindside me. I am so thankful that I have such a great network of family and friends to keep an eye on me. These ah-ha moments always seem to come to the surface in conversation. I have also learned that I must be honest with myself. Denial is so unhealthy and I don't want to live like that. Ignorance to your own feelings is not bliss, it is toxic. So tonight I mourn the loss once again of a normal child and what it feels like to be excited when your child grows up.

On a happy note...Logan is going to preschool in the fall. We had a meeting with our school district today. Our living room was full of wonderful women, some already on Team Logan and some new to us. We discussed getting Logan in preschool next year! It seems too soon because Logan still feels like my baby boy. By next fall, he will be ready.  He needs the opportunity to be around other kids.

He may be ready but I'm not! With Lauren, I have been with her at preschool once a week. Next year my involvement will be much less. Both my kiddos will be on their own! What is a mom to do then? Hmm, I have a few good ideas!

I know Logan is in good hands. Our ECFE team is top notch. We have great advocates on our team. Another bonus, Logan's home care nurses will accompany him to school. What a relief to know he will have his caregivers at his side.

We took him to story time at the library last week and he seemed to enjoy the outing. He watched the other kids from his wheelchair and had the librarian in the corner of his eye the entire time. We have learned that Logan's cortical visual impairment means that his peripheral vision is better. So it makes sense that he watches people from the corner of his eyes.

I hope to bring Logan to story time as much as possible. He really seemed to enjoy it. I have so many ideas for activities and I can't wait to share our journeys with Logan this Spring and Summer. That is, if we ever have either one. I think it is probably snowing outside as I write this post on May 1st. This Minnesota weather is totally bananas!

Thanks again for listening. I hope my next post brings a more sunshine and 75 vibe!