Among the many difficult choices new parents must face, one is whether to bank their child’s cord blood. For both our dwarf and non-dwarf child, deciding how to proceed was no easy task. We attempted to research whether there was any special benefit for LP parents or parents of dwarf babies to bank the cord blood, but we did not find anything concrete. And according to the Cord Blood Registry, “for inherited genetic conditions, the child will not be able to use his or her own stem cells. A matched sibling’s stem cells would be the first choice.” If you find any published research showing an extra benefit for cord blood banking with dwarfism, please do let us know so we can spread the word!
Who said being a stay-at-home mom is not dangerous? I slipped on our glossy, 80’s kitchen tile this morning and then banged my head really hard on the wall. Thankfully, I didn’t black out. But, I did have this shooting pain throughout my body and seriously thought I might get major spinal cord injury from it. I fell on the carpet, which cushioned my fall. Still, it was a couple of minutes where my body was numb, especially my right arm, which has the most symptoms from my spinal compression. I just laid there in tears. Meanwhile, my LP son just thought it was funny and couldn’t stop laughing. Stunned, I clarified to him that I’m really hurt. He still continued to laugh. The baby thought that because her brother was laughing she should laugh too. In fact, she thought it was Mommy playing, so she tried to get on my back. I screamed to get her off me . . . there was nothing I could do to get them to take me seriously quickly. Feeling helpless, I yelled sternly to get the phone so I could call my husband. My son got it, but still continued laughing.
- Dwarf Mama’s Lesson Learned: Never play games with your kids faking injury. They wouldn’t know if you really need help. I never play these type of games with my kids, but other people do.
I can go on and on as to how I got to this subject in my head, but I’ll try to keep this short and to the point.
Strength as a Person With Dwarfism
If there’s anything you can give your child with dwarfism, it’s strength. Strength to get through anything, even when the world is sometimes built against them. It’s something you don’t need to buy in a catalog, order online, or qualify for. But, the strength that you give your child to just live life to the fullest, without thinking they were gypped or swindled into less of a life just because they have dwarfism. It will be worth more than you could ever pay for or get assistance from. See them for them and not as “poor” them. Our life has NO limitations, despite our size. We ARE capable of whatever we want to accomplish.
Packing to travel can be a pain if you have to include a CPAP/BiPAP in your luggage. No matter how tall you are, the CPAP is just one more thing to lug around. At the same time, you need to keep this expensive medical equipment safe from damage. It helps you breathe while sleeping, so no matter where you are, you will always need your CPAP. Otherwise, even just one night without it can mean a really groggy, grumpy day to say the least.
I prefer to put the CPAP in a hard sided luggage and check it in with the other luggage, but this does add some risk if your bag does not show up on time. If you choose to pack your CPAP as carry-on luggage and go through security, be prepared to have them touch all the parts that go into your nose/mouth, etc. Since it’s a medical device, it should not be counted as one of your personal carry-on luggage. My husband usually asks them to change gloves before examining the CPAP so there’s no cross contamination. However, lately they the airlines seem to have relaxed their policies around CPAPs. We remove the CPAP case from the carry-on, place it in the bin, and they haven’t questioned it.
If you consider packing it in your luggage versus as a carry on, try to pack clothing around it even if you have a hard case luggage. Packing it tightly with your clothing would help prevent it from being tossed around so much. I usually pack it at the bottom (the part that is the bottom when standing upright) towards the wheels. It’s going to most likely be the heaviest part of your luggage, so it helps to keep it there.
We recently downsized into a smaller home so we could move from a 2-story house to a 1-story. One of the unfortunate aspects of the move was the loss of closet and storage space. In addition, it’s an older home with very dated closet organization (a pole across the closet and maybe a shelf or two). Having two dwarf parents and a dwarf child in the house, this became a problem real fast! We are trying to teach our dwarf child to be independent, so we did an extensive search for custom closet systems.