Wednesday, December 4, 2013
I wanted to update all of my readers on how the Keith family is doing. In case you haven't seen my last post our dear pastor lost his granddaughter on Thanksgiving day. We are close with their whole family and our children play in the nursery together at least once a week. Although we are still mourning the loss of this precious 18 month old baby we will be celebrating her life tomorrow at her funeral.
The family is doing as well as could be expected. The other two girls have been tested and are completely healthy. As far as I know the cause of death is unknown. The autopsy showed nothing wrong with PK. She went down for a nap and despite her mother knowing CPR and a pulse being detected she still did not make it. God had a plan in mind for her and she is now walking on streets of gold.
On Sunday pastor spoke about crisis at Christmas (the message was already planned). During communion the elders came up behind the pastor and lifted up his arms and prayed for him.
It was a beautiful moment. Pastor also thanked everyone for the outpouring of love and sympathy and then he read this letter from my dad.
Saturday, November 30, 2013
I had a Thanksgiving post planned. It was going to be about heritage. I am so thankful for my heritage and it's been on my heart lately since recently Ezie was dedicated in the same church and by the same pastor where I was dedicated as a baby.
Our church is even called Heritage Fellowship so heritage is of great importance to us.
The reason I did not get this post published is because on Thanksgiving day before we sat down to eat dinner tragedy struck and we had been informed that our pastor's granddaughter who is 18 months old suddenly, and completely unexpectedly, stopped breathing. She still had a pulse so we, along with all those connected to this family from all around the world, began to pray. Unfortunately later that evening we read this update from the pastor (I put the initials of his granddaughter instead of her name).
Today, I am thankful that my son and his wife know the Lord. It is in times like this we are very grateful that they have family and friends who love them. Thankful for the support system they have, a support system of people of faith who will be praying for them as they are passing through the valley of Baca (the valley of weeping).
Earth has no sorrows, that Heaven cannot heal. God gave them beautiful little twin girls. Today the Lord who does all things right, chose to take PK home earlier than the rest of us. We are thankful for the blessing she has been, the joy she has given us, and the place in our hearts that she will always have. Thank you Lord for the privilege we had to love this special God given baby. We thank you because we know that you make all things work together for good.
Since then both of their other daughters were admitted to the hospital. I have no information on what type of illness this is (if that is even what it is). I do know that their oldest daughter who is Z's age (6) has been discharged and this is the latest update about PK's twin.
PL is still in Children's Hospital in Cincinnati. They will finish their testing today, late last night they were planning on a spinal tap this morning.
My heart has been broken over all this. Pastor and his family were there for us when we lost my little brother 22 years ago. In fact my dad even pulled out a letter of sympathy that he had saved, which was written by Pastor's son (the twins father who is shown standing beside pastor in the photo above).
When we moved here almost two years ago our Pastor's daughter-in-law (the twins mother) was pregnant with the twins while I was pregnant with Ezie. We had plenty in common just from motherhood and pregnancy, but we bonded more when SJ was diagnosed because she happens to work for an ENT. In fact she "moved mountains" to get us an appointment with one of the best ENTs in the nation and then she got the appointment date moved up so that we could see him sooner. He is the Doctor that we go to today and I am so grateful that we had this connection. My friend also recently wrote a letter on SJ's behalf to an association that gives scholarships to children with hearing loss. The letter brought me to tears, and I was so grateful for her friendship and how she has been there for me in the midst of such a difficult time.
I had no idea what she would have to go through though. I can't even imagine being in their shoes on Thanksgiving day. As a church we are all mourning this loss. I worked in the nursery for the Friday night service and knowing that PK is gone is very difficult to process. This is a little shot of her and Ezie hanging out in the nursery a few weeks ago.
I know all of you mothers and friends reading this can imagine the blanket of sorrow that is covering the church right now as we grieve the loss of this precious little life. PLEASE pray for the Keith family this Holiday season. This is a hard enough thing to go through without it happening on Thanksgiving day. This family has walked through some difficult times with us, and now we are ready to walk along side them, and just be there for comfort and support knowing that, as pastor said, God makes all things work together for good.
Monday, November 25, 2013
When I think about what the seasons feel like here in middle America I feel like it's mostly winter and summer with little slivers of transition that we call spring and fall. I know all about the solstice, yeah, yeah. But summer this year, although very mild, lingered into October
On a school field trip to the pumpkin patch in October. Feeling totally comfortable in shorts and a tank top!
and as Halloween drew nearer I wasn't sure if we were going to see much with the fall foliage this year, but it did happen,
I could have an entire album of photos of the trees with how gorgeous it was this year, but I'll just have to hold onto my mental snapshots because I was way too busy to venture out with my camera.
just in time before the first snow in mid November.
So the postcard-worthy autumn lasted barely a month, but I still enjoyed every bit of it.
When the leaves started falling and Z asked if we could make a big pile to play in I told him we didn't have a rake. We actually don't even have a yard, but the next day as we made our way to the bus and rustled through the crunchy brown layers on the ground he said "mom, I know you said we don't have a rake, but could we just play in the leaves?" How could I refuse? We found a patch of grass where autumn leaves abound and those three had the time of their lives. I am so glad we stopped to enjoy this season, however brief it is.
Friday, November 22, 2013
It's been a year since SJ had her cochlear implant activated. There have been a lot of highs and lows, but I feel like FINALLY, we are getting some momentum and everyday SJ is saying new words and responding with a new level of understanding. In order to document what's happened this past year I wanted to do a little recap. And even though SJ's situation is not typical, especially compared to a baby diagnosed at infancy, I still hope that this time line could be informative for parents of deaf children researching what to expect. Here is the progress from SJ first 12 months of hearing beginning at age 2 1/2.
What may look insignificance was a huge milestone for SJ. It was exactly 6 months a
At this point I was able to see a little more response from SJ in terms of hearing, but not much and her school was concerned because their professional diagnosis showed that she was not even detecting speech sounds and needed a new mapping. And they were right!
5. At the end of February SJ was activated on her left side and hearing bilaterally for the fist time. Despite the direct requests from the school and ENT, SJ's audiologist still hesitated to add much volume to SJ's implants (again she was self proclaimed "conservative"). In the meantime SJ's was healing well and we were becoming more comfortable with the cochlear implant devices.
6. The school volunteered to have their audiologist take over with SJ's mapping and it was like NIGHT AND DAY! It is so important to have the right mapping (in layman's terms this is basically the setting/volume, it's a complicated process). When SJ had her CI's remapped in March she was really hearing most sounds for the first time and it was amazing to watch. She even said her first word, "up"
7 & 8. SJ continued to grow leaps and bounds once she had the proper mapping she was consistently turning to environmental sounds and to her name. She started saying uh-oh, more, and some animal noises on her own and many other words with prompting.
9. We raised money for SJ to be able to go to summer school and her vocabulary continued to grow to up to 20 words. Some days were better than others as far as communication related frustration and cooperation with even wearing the implants, but we were excited about the upcoming school year where SJ would be going full time.
10. On SJ's first day of school we had to pick her up early to have a CT scan at the children's hospital because her right implant was causing her pain. The scans came back fine, but apparently she had some shifting that is not traumatic, but does take a few weeks to heal before the scar tissue sets the device back into place. This was scary, but praise the Lord everything turned out fine.
11. At this point between IEP meetings, a research study group, and observations. I felt like things were at a stand still again. It's hard to see your child be so far behind her peers, but luckily I now know that it gets better.
12. In October SJ had a breakthrough. She can now refers to several people by name and she knows over 60 words. Everyday I hear her saying new things and I really, Really, REALLy believe that the worst is behind us this time.
*I am going to get a better video up soon! One where she is talking on her own without being fed all the answers!
Thursday, November 21, 2013
I've seen a lot of content online lately that is trying to give more credit to young girls by not limiting them to be a little beauty queen in the making. Yay, this sounds good! Here's the deal though I HATE to be THAT mom that takes a good thing and finds something negative to say about it, but here goes nothing. I've kind of touched on this before in my response to anti-dove campaign when I said "I am not about to relinquish femininity just because it's been distorted".
The only thing I would urge parents to consider when trying to inspire and cultivate "spatial skills" in their daughters is that there are a lot of girls that may use these skills and have no interest in engineering. Believe me when I say that I am all about girls using their brains! I am just saying that the fact that the majority of girls are into horses, reading and writing more than rockets and forts isn't necessarily a problem to be fixed.
My sister-in-law is an engineer of sorts. She has a computer science degree and works in a male dominated field as a programmer analyst. I am extremely proud of all that she has accomplished in defying the odds and I would be thrilled if SJ followed in her footsteps. I also have 7 other sister-in-laws and several adult nieces Most of them are nurses and teachers. The statistics for these jobs are the same as the engineering fields, but in reverse (way more women than men). Is it because we are stuck in the 1950's like the commercial boasts, or is it that something inside of men are more inclined toward building and something inside of women wants to nurture? Sure there may be more men inventing, but behind every great man is… a mother that got him out of bed every morning and read to him every night. Or perhaps a female teacher that challenged him and kept him on track, or a wife that makes more money then he does as the CEO of a company (I am not totally old school here).
I may not be an engineer, but I am certainly not a brain dead trophy wife. After having 3 children I know enough about breast feeding to be a lactation consultant and I've blogged so much about SJ's diagnosis I could write a book about genetic sensorineural hearing loss or first language acquisition. It's street smarts YO. Don't be hatin'. Okay, that last part was a joke, but I am serious about the part that says we do not need to demean or discredit girls for following a more traditional roll as a woman. I know that even mentioning the "tradition roll of a woman" doesn't fall in line with the more popular politically correct, abstract gender rolls of the 21st century, but I'm okay with that.
Just to make sure I have been clear I think the Goldi Blox toys look amazing and I would definitely get something like that for SJ if she were a little older. We love the educational toys, always have. I like what Debbie Sterling is doing because there is so much garbage out there marketed towards our girls. But when I read on Forbes that “Ideally every occupation would be 50/50, with both genders bringing different perspectives to the table.” I beg to differ. We don't have to make girls into builders to build and empower girls.
Tuesday, November 19, 2013
This time 4 years ago I found out I was having a baby GIRL! From the moment we received the news everyone, whether they knew me or not, had something to say about the gender of the baby on the way. "OOOOOH a baby girl! They have the cutest stuff out there for little girls. Get ready to go shopping... the bows, the dresses, the shoes! You are going to have a blast".
Now, I am not too much of a girly girl. I never have been that type, but I definitely got into the idea of having a little mini me sporting some trendy hipsters styles.
Thursday, November 14, 2013
I feel privileged to be able to watch my children grow, develop, and blossom on a daily basis. I remember when we had a garden in Texas and I would get that giddy Christmas morning feeling everyday before I would go out to see if there was any knew growth. Maybe some seedlings have come up, or a flower bud on the summer squash vine, or a watermelon that is ready to pick and eat. It was my happy place.
I think I am candid enough about my imperfect life that I don't even need to go into how challenging motherhood can be, but right now I wake up with a Christmas morning feeling and it's not because of the Holiday season. It's because my children are on the verge of something new and I am anxious to see the growth.
Ezie is walking and talking more and more. I finally got some of it on video. Excuse the mess. It's like an obstacle course for the poor little fella.