8 Things to know about Lindsay, aka Wifey, aka Mama of Olivia, a kiddo with Spina Bifida
Hi Team Livie Lu!
I thought I would dig even deeper into the psyche of crazy SB mom :) I hope by sharing more personal experiences it welcomes you into our lives and helps to see where we are coming from much of the time.
I read blog posts all the time about "how to be friends with a special needs mom" (didn't capitalize on purpose). At first I was just trying to find one to share with you but none really covered my experiences. Shocking right? Because all special needs Moms are the same?! Obvs Linds, no we are not. So I decided to write my own.
How did I feel my story differed? So many of these Moms are stay at home Moms. I have decided not to be a stay at home Mom, I enjoy working and enjoy my family life. So this blog post is about my story of "balance" as a special needs Mom. I hope you enjoy!
Join Me on a Journey Through My Mind (scary, I know):
8 Things to know about Lindsay, aka Wifey, aka Mama of Olivia, a kiddo with Spina Bifida
1. I was bad at staying in touch pre-Olivia. Now I am HORRIBLE and I am sorry, but I don't see it getting any better. On top of full time work and normal parent stuff, we have 2 PT visits weekly, regular updates from Grandma on daily progress, sometimes an OT visit, or a Spinal Clinic visit (those take about 3 hours), or a neurosurgeon visit, or an orthotist visit (braces specialist). I am constantly thinking about what dr appt, visit, therapy is next on the list, and we aren't even as crazy as some others - just to give perspective. Sometimes I need to call somewhere and schedule the visit, sometimes I need to attend, sometimes I just need to get an update because Russell or Grandma attended. I worry regularly that I have missed something (and so often I do). And she isn't even fully independent yet. Lordy help us all.
2. I am terrified of going on or planning a vacation. So if you throw out the idea of a vacation, committing is extremely hard. It's REALLY not you, it's me. I am scared the shunt will malfunction (it has already happened twice and we had to cancel a vaca). Scared that the air pressure on a plane will cause some weird problem (not actually normal, just paranoid). Scared that soon we will have to bring her Gait Trainer on the plane - and how will they treat an $800 piece of critical instrument that won't fold up like a wheelchair/ won't fit well in small spaces. Scared that we won't be able to take her GT, and how do you have that conversation?! "Hi honey, you can't walk independently when we visit Grandpa because taking your GT just won't fit." (WTF?!) (I am sure there are options, trying to figure that out) So vacation planning is scary stuff folks.
3. Every time I do start to plan a vacation I have to first find the closest pediatric neurosurgeon (a good one), in case we have a shunt malfunction. If there is not a good one close, I will probably never go there. Ok maybe not ever, but not any time soon. Paris is a dream that I don't even know how to make happen as I want to take Olivia. That's a long plane ride with no pediatric team available.
4. I am physically exhausted all.the.time. Think of your own children, at what age did you get to put them down, standing on their two cute little legs, and have them walk (or run) along side you? Probably around 1 - 1.5? Olivia is almost 2 yrs old and at 24 pounds and we still have to carry her everywhere. Her PT calls it the "awkward" stage - in between walking on her own and needing to be carried. Its loooovely (sarcasm). She cannot get anywhere on her own. It is carrying around a very wiggly, very heavy bowling ball. Of course we encourage her to crawl but it becomes frustrating and overwhelming to her, plus she gets rug burn a lot (ouch!). So carrying her is usually the most optimal option. One day she will be using the gait trainer on a regular basis. So close yet so far away.
5. I have to constantly be looking for latex. The #2 reason for a latex allergy is spina bifida. It is an exposure allergy so, if she is allergic (which we don't even know), the reaction gets worse with each contact. This means our home, car, anything I can control really, is latex free. Hopefully when she is then minimally exposed when she starts school we will have little to no reaction. What is latex in, you may ask? EVERY F-ing THING. Balloons, cleaning products/ gloves, erasers, toys (oh the toys!!!), foods, etc, etc, etc. Yep you read that right, bananas, avocados, passion fruit, kiwi and chestnuts are a no-go in our house. They have the same protein found in latex so just to be safe, we don't mess with it. FYI - Disney just started carrying mylar balloons but it is still a HUGE bouquet of latex balloons and Olivia always wants one so badly. Le sigh. But I digress...
6. I am, as of recently, very scared of play dates. Never stop inviting me though!! We want to come play :) We are getting to the point of taking our Gait Trainer everywhere with us. What if it doesn't fit in your house? (of course, not your fault) What if you have too many stairs? (also, not your fault). What if she can't keep up? What if you want to go to a park with sand? And all play dates can't be at our house, so I need to figure all this stuff out and STAT. Currently working through that.
7. Sometimes hearing everyone's milestone stories are hard - but it DOES NOT MEAN I don't want to hear. On the contrary, I TRULY want to hear! I am deeply and exceptionally excited when you child hits a milestone of any kind as milestones are big in our house. But if I seem a bit contemplative when you talk about it, please do not take it personally. Just know I have my own inner struggles that are of NO fault to you. KEEP SHARING WITH ME, please. Don't stop :) I need those stories, getting excited for you child helps me too. A lot!
8. Remember, I am still a Mom first and also a friend. The more "holy crap, my kid pooped today and it was gross!" texts the better :) While I know all of the above is overwhelming, takes a lot of energy, and can be exceedingly difficult as a friend I also love each of you. I need the love, the support, the continued poking, the texts of "hey, crazy lady!", or the "my kid just smeared spaghetti all over their hair!". Ultimately I am a Mom just like you. It doesn't mean I don't want to see you or talk to you, it just means it make take time to plan and actually put something on a calendar. Text are great because I can respond whenever - esp for you folks 2 -3 hours away. Not being spontaneous is even better ;)
Thank you for learning a bit more about Me! I love you all and appreciate you continuing to keep up with our crazy life!!
HUGS :D
Be Happy. Laugh. Enjoy Chaos.
I thought I would dig even deeper into the psyche of crazy SB mom :) I hope by sharing more personal experiences it welcomes you into our lives and helps to see where we are coming from much of the time.
I read blog posts all the time about "how to be friends with a special needs mom" (didn't capitalize on purpose). At first I was just trying to find one to share with you but none really covered my experiences. Shocking right? Because all special needs Moms are the same?! Obvs Linds, no we are not. So I decided to write my own.
How did I feel my story differed? So many of these Moms are stay at home Moms. I have decided not to be a stay at home Mom, I enjoy working and enjoy my family life. So this blog post is about my story of "balance" as a special needs Mom. I hope you enjoy!
Join Me on a Journey Through My Mind (scary, I know):
8 Things to know about Lindsay, aka Wifey, aka Mama of Olivia, a kiddo with Spina Bifida
1. I was bad at staying in touch pre-Olivia. Now I am HORRIBLE and I am sorry, but I don't see it getting any better. On top of full time work and normal parent stuff, we have 2 PT visits weekly, regular updates from Grandma on daily progress, sometimes an OT visit, or a Spinal Clinic visit (those take about 3 hours), or a neurosurgeon visit, or an orthotist visit (braces specialist). I am constantly thinking about what dr appt, visit, therapy is next on the list, and we aren't even as crazy as some others - just to give perspective. Sometimes I need to call somewhere and schedule the visit, sometimes I need to attend, sometimes I just need to get an update because Russell or Grandma attended. I worry regularly that I have missed something (and so often I do). And she isn't even fully independent yet. Lordy help us all.
2. I am terrified of going on or planning a vacation. So if you throw out the idea of a vacation, committing is extremely hard. It's REALLY not you, it's me. I am scared the shunt will malfunction (it has already happened twice and we had to cancel a vaca). Scared that the air pressure on a plane will cause some weird problem (not actually normal, just paranoid). Scared that soon we will have to bring her Gait Trainer on the plane - and how will they treat an $800 piece of critical instrument that won't fold up like a wheelchair/ won't fit well in small spaces. Scared that we won't be able to take her GT, and how do you have that conversation?! "Hi honey, you can't walk independently when we visit Grandpa because taking your GT just won't fit." (WTF?!) (I am sure there are options, trying to figure that out) So vacation planning is scary stuff folks.
3. Every time I do start to plan a vacation I have to first find the closest pediatric neurosurgeon (a good one), in case we have a shunt malfunction. If there is not a good one close, I will probably never go there. Ok maybe not ever, but not any time soon. Paris is a dream that I don't even know how to make happen as I want to take Olivia. That's a long plane ride with no pediatric team available.
4. I am physically exhausted all.the.time. Think of your own children, at what age did you get to put them down, standing on their two cute little legs, and have them walk (or run) along side you? Probably around 1 - 1.5? Olivia is almost 2 yrs old and at 24 pounds and we still have to carry her everywhere. Her PT calls it the "awkward" stage - in between walking on her own and needing to be carried. Its loooovely (sarcasm). She cannot get anywhere on her own. It is carrying around a very wiggly, very heavy bowling ball. Of course we encourage her to crawl but it becomes frustrating and overwhelming to her, plus she gets rug burn a lot (ouch!). So carrying her is usually the most optimal option. One day she will be using the gait trainer on a regular basis. So close yet so far away.
5. I have to constantly be looking for latex. The #2 reason for a latex allergy is spina bifida. It is an exposure allergy so, if she is allergic (which we don't even know), the reaction gets worse with each contact. This means our home, car, anything I can control really, is latex free. Hopefully when she is then minimally exposed when she starts school we will have little to no reaction. What is latex in, you may ask? EVERY F-ing THING. Balloons, cleaning products/ gloves, erasers, toys (oh the toys!!!), foods, etc, etc, etc. Yep you read that right, bananas, avocados, passion fruit, kiwi and chestnuts are a no-go in our house. They have the same protein found in latex so just to be safe, we don't mess with it. FYI - Disney just started carrying mylar balloons but it is still a HUGE bouquet of latex balloons and Olivia always wants one so badly. Le sigh. But I digress...
6. I am, as of recently, very scared of play dates. Never stop inviting me though!! We want to come play :) We are getting to the point of taking our Gait Trainer everywhere with us. What if it doesn't fit in your house? (of course, not your fault) What if you have too many stairs? (also, not your fault). What if she can't keep up? What if you want to go to a park with sand? And all play dates can't be at our house, so I need to figure all this stuff out and STAT. Currently working through that.
7. Sometimes hearing everyone's milestone stories are hard - but it DOES NOT MEAN I don't want to hear. On the contrary, I TRULY want to hear! I am deeply and exceptionally excited when you child hits a milestone of any kind as milestones are big in our house. But if I seem a bit contemplative when you talk about it, please do not take it personally. Just know I have my own inner struggles that are of NO fault to you. KEEP SHARING WITH ME, please. Don't stop :) I need those stories, getting excited for you child helps me too. A lot!
8. Remember, I am still a Mom first and also a friend. The more "holy crap, my kid pooped today and it was gross!" texts the better :) While I know all of the above is overwhelming, takes a lot of energy, and can be exceedingly difficult as a friend I also love each of you. I need the love, the support, the continued poking, the texts of "hey, crazy lady!", or the "my kid just smeared spaghetti all over their hair!". Ultimately I am a Mom just like you. It doesn't mean I don't want to see you or talk to you, it just means it make take time to plan and actually put something on a calendar. Text are great because I can respond whenever - esp for you folks 2 -3 hours away. Not being spontaneous is even better ;)
Thank you for learning a bit more about Me! I love you all and appreciate you continuing to keep up with our crazy life!!
HUGS :D
Two of the crazies I am blessed enough to call Family :)
Be Happy. Laugh. Enjoy Chaos.
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