Several people have asked me recently if having Caleb has been more or less what I was prepared for and expecting. They wonder about his development. They ask about the future. I thought it might be time for some open heart posting, because you might be wondering this too.
The physical side of taking care of two kids, of getting in and out of the house, of learning to care for a typical child, all these things I imagined would be big challenges. On the whole though, it has been much easier to do that I thought it would be. Caleb lets me know when he has needs and I actually, in general, know how to fulfill them. There is so much instinct involved in this parenting that was not available with Aimee. I have really come to see just how challenging raising Aimee has been. And I am finally seeing that I can be a successful parent and raise a healthy child.
On the other end of things, I was not prepared for the emotional challenges. This last couple months have been some of the most discouraging that I have yet experienced. I am so enjoying my son. He has an amazing personality and is very fun to take care of everyday. Yet, as I watch in awe, he figures out how to do things that I have been working to teach Aimee for over 2 1/2 years. He has looked me in the eye since day 1. He immediately knew how to grasp, reach, and eat. He has worked out for himself how to roll, loves to stand...all these things that have not only been impossible to teach Aimee, but that she hates to do. Not that I blame her. Almost every time we exercise and work on her development, she is faced with inability. I do my best to praise her for her hard work and for any positives. Yet, as I sit here and watch Caleb, he is joyfully discovering what his body is capable of doing. He is delighted as he plays with his feet or sticks his fingers in my mouth and nose :). Of course, he is also working as he finds new ways to move, but he is continually rewarded with progress. Aimee just ends up tired. And honestly, so do I.
More often I am feeling that Aimee is trapped. She isn't disabled, but her body and mind are. Her spirit inside is whole and I quite often feel when she cries that she is frustrated at being stuck inside her limitations. That she wants to see, to communicate, to break out of the walls that surround her. My heart so wants to help her, to reach through the haze she is in and pull her through, to hear the thoughts on her heart.
The future? From here, I am looking around the invisible bend of time and wondering, how will we do it? Oh yes, I wonder about her as a 16 year old, but I also wonder how will we do it next year...how will we do it tomorrow...? We know that in our journey we will continue to face challenge, to find delights, and to seek more grace from above and from you who surround us. And for tomorrow, we will be so thankful for another day to love each other, dear Aimee, and sweet Caleb.
4.23.12
Aimee has just finally recovered from being quite ill for about 2 1/2 weeks. During which time I turned into a
paranoid mother. The following are all searches that I made on WebMD
the first week that she was sick: pneumonia, yeast infection, seasonal allergies, low blood
pressure, food intolerance, normal range of children's heart rates, eye
infection, types of fever, and distended stomach. Does that make me a nominee for the
crazy mother award?
We ended up taking her in to Urgent Care at Children's after the first week. We wanted to have a chest x-ray done to be sure it wasn't pneumonia. Thankfully it just turned out to be bronchitis, so we brought her home to care for her. Looking back I probably should have taken her to the ER instead and considered having her admitted. We had a very hard time keeping her hydrated, suctioned, and comfortable. In the end she did recover, but if I am in that situation again I don't think I'll take the chance.
Aside from sickness, it was a wonderful break. I have become entirely jealous to be a stay-at-home mom. Yes, I kind of am a stay-at-home mom. I do work part time for my church, but thankfully they allowed me change to working from home about 6 months ago. While Aimee was sick though, she wasn't in school, therapy and hospital appointments were cancelled, and I couldn't do her normal exercises. That side of it was lovely, lovely, really lovely. I vacuumed. I played with Caleb for longer than 5 minutes. I exercised. I read books to the kids (Aimee wasn't super interested, but I read to her anyways). I got caught up on cleaning, bills, baking, laundry, projects. Aside from running errands and going to the hospital, I did not leave our home for two weeks. Oh yes, lovely is the right word.
Last week I took Aimee to her follow up with the Pulmonary department regarding her most recent Sleep Study. They had increased the intake pressure on her BiPap machine and given her a new mask style last month. We went in to review these changes. Unfortunately, we still haven't noticed a significant improvement in Aimee's energy levels. We had her fitted for another new mask since the second one was leaking on her eye, causing serious irritation and potential scratches on her cornea. We're hoping to have this new mask in the next couple of days.
We ended up taking her in to Urgent Care at Children's after the first week. We wanted to have a chest x-ray done to be sure it wasn't pneumonia. Thankfully it just turned out to be bronchitis, so we brought her home to care for her. Looking back I probably should have taken her to the ER instead and considered having her admitted. We had a very hard time keeping her hydrated, suctioned, and comfortable. In the end she did recover, but if I am in that situation again I don't think I'll take the chance.
-Video of the kids playing pre-sickness-
Aside from sickness, it was a wonderful break. I have become entirely jealous to be a stay-at-home mom. Yes, I kind of am a stay-at-home mom. I do work part time for my church, but thankfully they allowed me change to working from home about 6 months ago. While Aimee was sick though, she wasn't in school, therapy and hospital appointments were cancelled, and I couldn't do her normal exercises. That side of it was lovely, lovely, really lovely. I vacuumed. I played with Caleb for longer than 5 minutes. I exercised. I read books to the kids (Aimee wasn't super interested, but I read to her anyways). I got caught up on cleaning, bills, baking, laundry, projects. Aside from running errands and going to the hospital, I did not leave our home for two weeks. Oh yes, lovely is the right word.
Last week I took Aimee to her follow up with the Pulmonary department regarding her most recent Sleep Study. They had increased the intake pressure on her BiPap machine and given her a new mask style last month. We went in to review these changes. Unfortunately, we still haven't noticed a significant improvement in Aimee's energy levels. We had her fitted for another new mask since the second one was leaking on her eye, causing serious irritation and potential scratches on her cornea. We're hoping to have this new mask in the next couple of days.
4.3.12 The Missing Pieces
At the beginning of my dad's sermon this Sunday, he shared the story of
the missing puzzle piece. A man named Jack Harris spent 7 and a half
years doing a 5 foot wide, 5,000 piece puzzle depicting 'The Return of
the Prodigal Son'. As he neared completion, he discovered that the
puzzle was missing one piece. He contacted the manufacturer only to
find, to his great disappointment, that the design was no longer made.
Upon hearing his plight, the company had one of their expert puzzle
designers individually create the missing piece to allow him to complete
his dedicated endeavor.
My dad expounded that some of us have worked so hard in an area of our lives only to find that we are missing pieces of the puzzle. All of our effort creates an incomplete, even distorted picture if it is not completed. He said that we can trust the expert designer who will skillfully create these individual, perfect pieces to complete the puzzle.
In our lives, we have felt like Aimee has been a mystery, a puzzle. Our idea of what her little life would be like has been replaced piece by piece with another image. We are starting to see the new picture outlined, but are still missing so many pieces. We know that the expert designer will provide us more insight to this mystery as the months and years continue. What a reassurance to know that He created the story of her life before it began! As much as we would like to understand it all right now, we know we will someday see that He is so good to guide us through it piece by piece.
My dad expounded that some of us have worked so hard in an area of our lives only to find that we are missing pieces of the puzzle. All of our effort creates an incomplete, even distorted picture if it is not completed. He said that we can trust the expert designer who will skillfully create these individual, perfect pieces to complete the puzzle.
In our lives, we have felt like Aimee has been a mystery, a puzzle. Our idea of what her little life would be like has been replaced piece by piece with another image. We are starting to see the new picture outlined, but are still missing so many pieces. We know that the expert designer will provide us more insight to this mystery as the months and years continue. What a reassurance to know that He created the story of her life before it began! As much as we would like to understand it all right now, we know we will someday see that He is so good to guide us through it piece by piece.
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