A few times this past week, I've allowed myself to get caught up in what our life might have been like if Leah had been born with just Achondroplasia. And I do say, "just" because obviously we'd take anything over the nothing (but beautiful memories) that we were left with.
I will admit that I don't always think about the fact that Leah had dwarfism. Maybe it's because we knew her fate all too soon (at 21 weeks). Maybe it's because we only got to spend less than 24hrs with her little amazing self. Maybe it's because I miss my baby so badly that I'd take ANYthing, over nothing.
I have all of the links saved on my "Favorites" of websites that describe Achondroplasia and blogs of families with children that have Dwarfism. Because for a glimmer of a couple weeks - we thought that was all that we were going to have to "deal with." Jason nor I were afraid of the diagnosis when we received it. I remember Jason saying boldly to the Doctor, "So.. is that all? She's going to be a little person?" We went to high school with several kids that had Achondroplasia. There are several TV shows out there now that feature wonderful families where the parents and children have dwarfism. So we knew that we could "deal" with it just fine.
What I never really had the chance to imagine or even begin to figure out was "How were we going to provide care for Leah?"
All of these things have been weighing on me lately. I know that we would've found the answers to these and any other questions we would've had because we were surrounded by an awesome team of Doctors and Specialists.
Leah had many if not all of the characteristics of dwarfism at birth. One clubbed foot for sure (we think), maybe 2 - but because of the way her legs were curved (due to the Thanatophoric Dysplasia) we didn't really figure it out. According to the nurse at delivery, her feet were fine. But that would mean several castings or surgeries to correct her feet over several years, possibly. Hydrocephalus (extra fluid in her brain) - may have been an issue. This would cause a surgery to insert a shunt for drainage. Ear tubes due to excessive drainage to help prevent hearing loss. Possible removal of tonsils and adenoids to allow her to breath better. CT scans to check to make sure her spine was growing properly. And constant check-ups to make sure everything was in order.
(The March of Dimes has more information about Achondroplasia here and also how they use their funds to further research for Achondroplasia and other skeletal dysplasias.)
I'd trade my grief for each and every one of those Doctor's appointments in a heartbeat!
I think it's really weighing on me because when Leah turned 1, she'd be going to the same school as Bryce. I know that she'd be so well taken care of there and so loved on that I wouldn't have to worry about a thing! (It's pre-registration time for next school year already and just under a month until her would-be 1st birthday.)
I know that if Leah just had Achondroplasia, I wouldn't even be thinking about wanting another baby or longing to hold her in my arms.
I will admit that I don't always think about the fact that Leah had dwarfism. Maybe it's because we knew her fate all too soon (at 21 weeks). Maybe it's because we only got to spend less than 24hrs with her little amazing self. Maybe it's because I miss my baby so badly that I'd take ANYthing, over nothing.
I have all of the links saved on my "Favorites" of websites that describe Achondroplasia and blogs of families with children that have Dwarfism. Because for a glimmer of a couple weeks - we thought that was all that we were going to have to "deal with." Jason nor I were afraid of the diagnosis when we received it. I remember Jason saying boldly to the Doctor, "So.. is that all? She's going to be a little person?" We went to high school with several kids that had Achondroplasia. There are several TV shows out there now that feature wonderful families where the parents and children have dwarfism. So we knew that we could "deal" with it just fine.
What I never really had the chance to imagine or even begin to figure out was "How were we going to provide care for Leah?"
- Were we going to be able to find a daycare or babysitter who would care for a special needs infant so that I could go back to work?
- Would we want to send her to a daycare or babysitter? (Just knowing myself, the answer is "probably not.")
- Would I even be able to return to work because of all of the Doctor's visits and possible surgeries?
- Would I need to return to work simply to help pay for the medical bills?
All of these things have been weighing on me lately. I know that we would've found the answers to these and any other questions we would've had because we were surrounded by an awesome team of Doctors and Specialists.
Leah had many if not all of the characteristics of dwarfism at birth. One clubbed foot for sure (we think), maybe 2 - but because of the way her legs were curved (due to the Thanatophoric Dysplasia) we didn't really figure it out. According to the nurse at delivery, her feet were fine. But that would mean several castings or surgeries to correct her feet over several years, possibly. Hydrocephalus (extra fluid in her brain) - may have been an issue. This would cause a surgery to insert a shunt for drainage. Ear tubes due to excessive drainage to help prevent hearing loss. Possible removal of tonsils and adenoids to allow her to breath better. CT scans to check to make sure her spine was growing properly. And constant check-ups to make sure everything was in order.
(The March of Dimes has more information about Achondroplasia here and also how they use their funds to further research for Achondroplasia and other skeletal dysplasias.)
I'd trade my grief for each and every one of those Doctor's appointments in a heartbeat!
I think it's really weighing on me because when Leah turned 1, she'd be going to the same school as Bryce. I know that she'd be so well taken care of there and so loved on that I wouldn't have to worry about a thing! (It's pre-registration time for next school year already and just under a month until her would-be 1st birthday.)
I know that if Leah just had Achondroplasia, I wouldn't even be thinking about wanting another baby or longing to hold her in my arms.
1 comment:
Kim,
I have the exact same thought process, 'just' achondroplasia. I was devistated when we learned she may possibly have dwarfism and I feel so silly about that. One one of Avery's ultrasounds they saw significant bowing of one of her femurs (later we realized it was the telephone reciever shaped femur they have) and the physician said it would need to be casted right away so we went to Toys R Us after our appointment and bought her several gowns :) Thank goodness they were 50% off that day. I was going to learn how to sow so that she would have clothes that fit right.....my employeer was going to let me work part time (in a managers position!) so I could stay home with her more. If she only would have just had achondroplaisa.....
I will be praying for you as you have a special date coming soon! We love you guys and think the world of ya'll. We talk about ya'll often :)
Love ya!
Post a Comment