The Importance of Hope

While speaking with my friend Michael about coping with having a permanently disabled child (he has an adult daughter with Down Syndrome who is fairly high functioning but still needs a lot of support), he mentioned the importance of parents having hope and dreams for their children. He spoke of the grief process parents go through that have disabled (I hate this word by the way- perhaps I should use "exceptional" like a magazine I read uses) children. When you are pregnant, you have all of these hopes and dreams of what being a parent will be like and what that child will be like. When you have an exceptional child, you grieve the loss of those dreams. It has been a process for me that I am happy to say I am starting to cope better with. I feel as though there was such a loss but then such a gain. A loss of what I had hoped for but such a gain of recognizing how wonderful Zoe is. I can see how amazing and wonderful she is and I can celebrate every little milestone. If I had a typical kid, I probably would not have noticed all that is involved in every little step. Typical children develop so quickly. You blink and they are running around. Our kids (1P36 kids that is) develop at a much slower pace. And yet, I feel as if I blinked and Zoe is almost two. She is rolling around, signing, using her hands, smiling, etc. I can remember the difficult early days when we weren't sure if Zoe would even be able to smile, laugh, or feel happy. And now look at her- her toothy grin makes me laugh every time. And so it is a loss but such a gain so that I am now able to appreciate the gains and let go of the loss.

But my friend pointed out something I had not thought about. Even though I celebrate every milestone and I support Zoe in her next step, I do not allow myself to dream or hope for her. I do not put a time on when I think she should achieve the next step (which I think is a good thing since she will get there in her own time). So how do I balance being realistic in my expectations and being a mom and just dreaming a little for her? I know in my heart she will sit up, stand, and walk some day. Is this dreaming or just expecting what potential I see to develop? Many people focus on the fact that Zoe is non-verbal and try to reassure me that she will speak some day. I am so happy that Zoe can sign. To me this is amazing. It breaks my heart that she can not yet sign as much as she would like. I can see the frustration when she is trying to tell me something but does not yet have the words. (This of course being a normal experience of all parents with their toddlers but I guess a little more heartbreaking to think she may never be able to tell me these things). But I see some of the older kids (ok, just one of the older kids) who is getting fluent in sign. Whitney reads, finger spells, knows more words than her parents. She is amazing. And so I guess I hope for that too. That some day Zoe will be able to better express herself in sign. I do not dare hope for verbal language to come along. Why? I guess a few reasons- first and most importantly, Zoe may never speak verbally and I do not want to waste my time hoping for something she can not achieve and have her feel like a failure. Second, I think our society focuses on judging a person's cognitive capabilities based on their verbal communication skills. We assume if someone can not speak verbally they must be dumb. And so I do not want to play into that. If Zoe can some day speak verbally, great. If not, that is ok too. Yes, I must admit I sometimes dream of the day she will speak "mama" but seeing her sign "mama" is just as amazing. To know that she knows who I am and can ask for me is just amazing. It is more than I would have hoped for this time last year.

And so Michael, here is a little dream for Zoe. Right now I am sick- home with fever and flu on Friday and still feverish today. So many things on my to do list that I just want to scream or go back to bed. But I put all of that aside and instead use my mental energies to think about our recent OT visit. The OT mentioned getting a pony walker for Zoe. I told myself, "Don't get your hopes up. Don't even look into it. Zoe is probably too small to fit one. Zoe probably can't coordinate her movements enough to use one." But I put all of that aside and I dare to dream and hope that we do get a pony walker. We looked it up on the internet and Zoe is just big enough now for the smallest size. We may have to put her boots on so she can reach the seat, but she should just fit. And in terms of coordination, perhaps she won't be able to use it. But can't a mother dream a little? Here is a blog that has some great pictures of a child (not a child with 1P36) in a pony walker (I don't think this mom would mind me linking to her blog- she is an amazing mom by the way with two beautiful daughters. She has some great posts on grief, acceptance, other people's comments, etc). I will also link to the video of her child running in the walker. This child was two when she got her walker, but she was higher functioning in her fine motor development, coordination, and expressive capabilities. Also, when the video was taken I believe she had the walker for four or five months. So I know this is not what Zoe will look like. But still, I do dream of her cruising around our house (now I am really glad we thought ahead and got a one floor bungalow with lots of wood flooring) and maybe some day chasing her classmates or her cousins.

http://micropreemietwins.blogspot.com/2007/01/pony-walker.html http://micropreemietwins.blogspot.com/2007/06/who-are-you-calling-poor-baby.html#comments
http://www.adaptivemall.com/ponysize0.html

The OT will be back on Tuesday to let us know what she has found out. She is hoping to get one on loan for us since they are expensive and we are not sure if Zoe will be able to use one or not. One issue is that Zoe arches her back (which is why she can not use a bumbo chair that many of the other 1P kids use). It looks like the trunk support should come up high enough to keep her from arching back too far. Also there is a possibility of getting a head rest if need be. The other issue is that she scrunches her feet up instead of keeping them on the floor. But she is doing this less and less now and she enjoys standing. She actually signs "more" during therapy when we are doing the standing. Sometimes she cries since it is so much work to stand but then immediately signs "more" after she has a rest. So I think she would really enjoy standing and getting around. We'll see.

.

Snow Fun!

It's that time of year again. The time when I wonder why the heck I agreed to move to Canada in the first place.....

Zoe (today) December 21st- her 22month birthday! Doesn't she look thrilled to be outside in the snow? She kept pushing her hat down over her eyes, I guess it was too bright for her with all the snow glare. She "helps" mom or dad shovel by sitting in a snow bank and telling us what to do. This year she is arching her back so she slowly slides down to the pavement. I can't really tell if she likes this or not, but she is not upset so at the very least she will tolerate it so we can get some snow shovelled and she gets some fresh air.

Zoe from March 2008. This is what we have to look forward to for the next three or four months. Yay!

All worn out from a busy day. Zoe ignored this dolphin up until a few weeks ago. Now she likes to pull it down into her face as she is falling asleep. It looks like the dolphin is keessing her.

Our PA trip/ Joe's wedding and Zoe's weight gain

Zoe with Uncle Joe and Aunt Kristen

Visiting with Friends and Family
We are still recovering from our big PA trip. We had a great time visiting with friends and family. We have now learned that travelling with Zoe takes a lot longer than it would with a typical child and we have to pace ourselves. We were not able to see everyone we wanted, but decided to shorten the list of people and really spend time with the people on the list. We had a great time showing Zoe off to old co-workers at the Children's Hospital of Philadelphia, visiting with Aine and Ailish (twins that I used to take care of), and hanging out with various friends and relatives. Zoe, as always, just went with the flow and did such a great job staying calm with so many new people to meet. She did a lot of arching, but we figure that she was overstimulated most of the time. Zoe also did not eat very well but drank a lot on the trip. Since it was so hot in Philly (we forgot how hot it can get!) we figured all the drinking was a good thing. And apparently she was getting enough calories.
The Big Weigh In
We went to the doctor yesterday to check Zoe's weight (previously, she had not gained more than 3 ounces since last November) and had a great surprise- Zoe gained over a pound this last month! I was so excited when I saw those numbers that tears immediately came to my eyes. Gavin and I have been so stressed out with Zoe weaning herself and not eating very well. We kept worrying that she would lose weight. But Zoe has shown us, yet again, that she knows exactly what she needs. Zoe's head has also grown a little. We could see how relieved the doctor was to see Zoe finally putting on some weight and head cm. Dr Taylor is an amazing doctor and really gives Zoe a chance to do things on her own first. Even though we have moved and her office is an hour away, it is worth making the trip every month because we know that the doctor is making choices with all of Zoe's development and social situation in mind. Now that Zoe has totally weaned herself and is taking pediasure and cow's milk, we have decided to stop pumping. I say we even though it is me pumping because we have made this decision as a family. At this point, I am pumping for about an hour total a day and getting less than 5 ounces total. It just is not worth the effort and time for such a small amount of milk. The doctor agreed with this plan. I am a little nervous that taking away the breastmilk will affect Zoe's growth and immunities, but we feel that it is time. Zoe has shown us that she does not want to breastfeed anymore so we are following her lead.
Zoe Signed Mommy
Zoe is really picking up sign language now. Zoe is consistently using milk and eat when she is hungry or wants a drink. She is inconsistent, but trying with all done. Also, for the first time ever- Zoe imitated mommy on Sunday night. We were very excited to see this. I kept thinking "My little girl has finally said mommy!"
Getting back into a routine
When I was doing Zoe's PT yesterday, I noticed that the arching is less since we got home. Also, Zoe's sitting skills are really progressing and she will sit for about 20 seconds before falling over. She is still very tired from the trip and is sleeping a lot. Since Zoe has vision, speech, and OT/PT coming this afternoon, I am letting her sleep the day away until they get here.
More people coming to visit this week
Gavin's mom flies in tomorrow, my brother Tom, his wife, and their four kids drive up tomorrow, and Gavin's aunt Patsy is visiting from Bangkok on Saturday. So we are going to have a full house and we know Zoe is going to be over stimulated again. We will get back into a routine once everything settles down. For now, its more important that Zoe get her sleep so she can keep on eating and packing on those pounds!

Going to Pennsylvania

This is just a quick post before we leave for PA. We have decided to leave at 5am and hope that Zoe sleeps for most of the car ride. Zoe has been having a tough week. She has not been eating very well but is drinking out of her cup like a champ. So at least she is well hydrated. Initially we thought she caught chicken pox from daycare, but her few spots look more like a heat rash and have not spread or gotten worse since Sunday. Zoe is also cutting a new tooth, so perhaps that is the reason for her fussy mood. No fever, so we figure we will hold off going to the doctor. When Zoe is sick, we have the added stress of worrying about her getting enough calories. It is obvious that she has lost some weight this week and we are feeling nervous about Zoe's appointment on July 7th. Zoe continues to get weighed on a monthly basis and has only gained 100 grams since last November. Talk about pressure on us to get her to eat! We are trying to push those thoughts to the back of our minds, but it is hard not to worry when she is not eating much and we can see she has lost some weight. But we know the doctor can't tell us anything we don't already know- keep her hydrated, keep watching her, keep trying to feed her, etc. Also frustrating is that Zoe had finally stopped arching so much and was sitting on her own for twenty seconds at a time. This week though, Zoe is arching more than before since she is not feeling well. So, we haven't done much PT and are just focused on keeping her comfortable and eating. It is hard not to get frustrated with Zoe when she is arching out of my arms and smacking me in the face. But I remind myself that it must be even more frustrating for Zoe since she is the one who can not communicate what is wrong and does not understand why she feels this way. I am glad that both Gavin and I work in health care and feel comfortable and confident in providing her care when she is like this. Hopefully she will get some rest in the car and feel well for visiting all of our friends and family this week. It is going to be a busy week for her and we know she will be overstimulated at times. We really look forward to seeing all our friends and family so we can show Zoe off. We are just so proud of her.
We will be sure to post some pictures from Uncle Joe's wedding when we return.