that I thought was worth sharing. I'm hoping I can get the link to work.
I am praying that I can be a voice that speaks up - praising God for His beautiful work in the lives of EVERY child. I'm thankful I've been given the opportunity to learn more and I hope and pray I will use it wisely.
Just had to write about our ENT visit today. Shortly after we arrived, the tech did the first hearing test. Eliana was asleep so the test was quick and easy. She passed!!! I was so excited to hear those words! The second test was also easy even though by now she had woken up. This one tested her middle ear (ear drum and fluid in the ear). She also passed this one! The tech commented that it was unusual for there to be no fluid in the ear. Thank you God!
We waited for awhile to see the ENT. He checked her briefly and told me that she was in the 10-20% of children without ear problems. I asked if this was for all children or those with Down syndrome. He responded that he was referring to those with Down syndrome. He said she is in the minority. I commented that sometimes being in the minority was a good thing. He thought about this for a moment and then agreed. He said it wasn't often a good thing, but in this case, it certainly is a blessing!
When he started to check her ears, I wasn't sure how he wanted her to be. She was on my lap, facing me. He tried to look in her ears this way, and she moved too much. He then asked me to turn her so that her back was to me. I did and then tried to hold her head. Her hand grabbed at him and then he asked me to hold her hand. He then laughed and said that he could tell we'd had no ear problems as I had not yet learned how to best hold a wiggly baby for an ear exam. We are soooo thankful to have had no ear infections or other problems! I told him I'd learned how to hold for blood draws and other procedures and was happy to have missed the lessons on this one.
He said that since she has passed two hearing exams in a row that she was doing great! He then went on to tell me that he was available if I needed him. We don't have to schedule to come back at ALL. He said he knew that we probably had a lot of medical appointments and that being able to take one off the list would probably be appreciated - and he is right! He said that he trusted that we were taking good care of Eliana and she is well connected in the medical community as well - so no scheduled appointments.
I'm thanking God for this sweet bit of news. It's nice to get a break after all she has been through this past year. Do you ever sometimes feel like you "deserve" a break? I know that I can feel that way, though the truth is that I don't "deserve" anything. There are so many people who have been and are going through so much more than I have. I'm thankful for this blessing. I'm grateful for both Eliana and for our family. It is a relief to have something taken off the list of things to be concerned about, kwim?
As I was riding home and listening to the radio, I heard a song about walking through trials. The singer questioned if she had the chance to go back and make different choices so that the road would be easier - would she? She noted that no, she would not. I thought about this and have even been asked this. Would I go back and do things differently? No. This path is a challenge - but also a blessing. I see things differently now and for that I'm thankful too. I have learned a lot on this path and think that my heart has had some repairs on it as well.
When I was pregnant with Eliana I was studying James. I questioned the passage in the first chapter - you know the one - "consider it all joy when you face trials". I had a hard time understanding how you could do that. I still think it is a hard thing. I have learned better how to do that - and am sure I have much more to learn. I'm grateful for so many things. I am truly a blessed woman.
With love,
Leslie
Yes, a little late - but still wanted to share.
Rebecca, Eliana and I attended a Valentines tea party with our Keepers group. (And had a neat class on flower arranging too!) Here is a photo of Eliana at the party.
We had a fun day. Rebecca was a sweetheart in helping to do soooo many things. She loves the traditions our family had and enjoys adding to or making them even more fun. She worked on making Valentines for everyone. I hadn't taken the time to do this with the younger boys - and she did. They had a blast making homemade cards with stickers and markers and more. They were so sweet too!
One of our traditions is to make a heart-shaped pizza for dinner. We spell out "I love you" in pepperonis on the top. I jokingly commented that we may be setting up any future spouses. Some may like this low-key tradition and others wonder what is so special about pizza?! LOL It does make things easy though. The childen enjoy helping to cook too. Our dessert this year was cookies with frosting and valentines sprinkles.
Rebecca also made a treasure hunt. (These are very popular in our family!) She had bought candy for everyone (even me!) and had sweet little bags for us all at the end of the hunt. Roger had also purchased candy for all the children. (Boy was there a lot of it between them too!) I had books for the children (that I had purchased for Christmas and not given out yet). We had so many things at Christmas that I just held back this present. I had done this last year too and it worked well. Maybe it will be a new tradition. To get to the books I had the children play "Mother May I". It was funny to see who remembered to ask and how they ended up getting there. I won't embarrass anyone, but it was funny.
I received a really sweet gift in addition to those already mentioned. I had lost one of my favorite earring awhile back. It was a pair of diamond stud earrings. I loved them as they could not be tugged on by a little one and wore them all the time. Well, Roger got a few hints about this (not from me) and decided to get me earrings.
He went to the store where he bought my diamond ring. He said it had been about 5 years since he'd seen the owner who did remember him. They talked and spent time catching up. Roger shared about our family and some things that had gone on over the last year. He asked about where we lived and schooling and Roger shared that we homeschooled. They had discussed options, budgets and more at this time too. When it was time to decide, Roger said he liked what they showed him (a mate to my earring) and asked what the cost was for it. The reply was "Nothing". He was stunned and said he was prepared to pay for it. They insisted that it was a gift. Apparently this is not an altogether rare occurance from this generous jeweler. Roger was overwhelmed. He was teary-eyed just telling me the story. He was stunned that someone would do that. It is an amazing gift to give someone that you barely know. It was a sweet thing - one that touched our hearts.
I'm thankful for my sweetheart - and all of our little sweeties. I hope you all had a beautiful day as well.
With love,
Leslie
I've been pondering a variety of things this week. Things that encourage and some that do anything but encourage. Being the Mom of a special baby comes with a new set of challenges, but many things also remain the same. All Moms want their children to be accepted, liked by others and able to be part of a group. We all enjoy the comments from friends, family and even strangers who notice their good behavior or how smart or cute they can be. All of us appreciate the encouraging word, don't we?!
On Sunday we watched Extreme Home Makeover. One of the family members was a young man, Patrick Henry Hughes , with great talent - and also disabilities. Over and over again you saw people on the show who were deeply touched by this man. People who were glad to know him and who had been impacted significantly by him. It was so encouraging to see people who were able to look at him and see his "abilities" and not his disabilities. Isn't that something we would all like to be better at? I know I can be guilty of being judgmental and it just isn't pretty. How much better when we can look at people and see the value in them, appreciate them and learn from them. I'm sure that's what God would want. I have prayed many times that God would give me His eyes to see others. I still want to learn that lesson. I've been given a lot of opportunities this year.
Also this week, there was a huge uproar about some comments a professor made in an upperlevel class. I heard a lot about it on a local loop since it happened at a local university. (UNC, where my dh also works.) The professor made a statement that all older women should have an amnio so that if they were carrying a child with Down syndrome, they could do the moral thing and abort the child. (He clearly doesn't know that most children with DS are born to mothers who are younger than 40.) He also related that he had known someone who had a child with DS and that this had ruined their lives. There's more if you would like to read the whole article HERE.
Many people locally have responded and written letters to the professor and the University President. I hope that it will have an impact. I am stunned and saddened that this is being taught in a college class. I realize that things have changed significantly in the last several decades. The life expectancy and also quality of life for people with DS has improved greatly. I'm so thankful for the opportunities we have to help Eliana grow to her potential.
Many people have called this view eugenics - an attempt to wipe out a group of people. What would the effect had been had he selected any other minority group of people? Is it a stretch to imagine that if we allow/encourage this type of action against one group of people that it then becomes far easier to allow it for another group? It is certainly far from "moral" in my opinion.
As I was bathing Eliana last night and watching her splash happily in her tub, I couldn't help but smile. As I think about it, when I or anyone else is watching her, that is usually what happens - you smile. She is such a delight!!! I love our little girl so very much and am so thankful that she is a part of our family. We are blessed - and we all feel that way! I love watching my children with her and the delight that she brings each of them. I love watching her learn new things and I think about how smart she is to be learning them.
One of her newest things is blowing kisses. We didn't really set out to teach this, but she just picked it up and really likes doing it. Last night while she was in the bath, she noticed the "baby" in the mirror. I had been pointing out her reflection when she wasn't engrossed in her splashing. At one point, she looked at her image and blew herself a kiss. It was adorable.
I hope that I can be a voice of encouragment about Down syndrome. Our lives have not been "ruined" by having a child with DS - far from it! Have things been difficult at times? Yes! Have we had new worries and doubts? Yes! Have we grown in our faith and learned lessons we might never have learned? Yes! Am I thankful to have the precious child in our family? Yes!!! I have found my heart stretched and my faith deepened as I learn more about loving and living in a way that would please God. We are truly blessed.
With a thankful heart,
Leslie
Hi Friends,
Thank you for your prayers and encouragment about the radio interview. Both Rebecca and I ended up talking and sharing our experiences. I am glad that some of you were able to listen. If some of you missed it and would like to hear it, try this link.
I wish that I had more opportunity to share about God's faithfulness. Hopefully, I'll improve with time.
It has been a busy last couple of days from Valentines Day (I have things to share) to a week-end trip to visit our dear friends (we had a blast) and back home again to a week of camp for Rebecca (American Girl Theatre) and school and field trip for the rest of us (and therapies!). I'll write more as I'm able to - and post some new pics as well.
Blessings,
Leslie
I'm not sure how this works, but perhaps you can listen to the interview tomorrow by following this link to the webpage of the station doing the broadcasting.
My dh just sent these links to the website of the station doing the interview. It looks like you may be able to listen to a live broadcast.
http://www.wralfm.com/Article.asp?id=68145
And here is a link to a webcam. (Guess I do need to look decent for a radio interview. LOL )
http://www.wralfm.com/Article.asp?id=350390
Roger found these and sent them to me. I hope they might help someone who is interested in listening - like you Mom. :-)
I'm off to bed now as it will be a full morning tomorrow.
Blessings,
Leslie
Hi Friends,
I have mentioned this before, but wanted to share it again. I'll be doing a radio interview tomorrow (Valentine's Day) at 10am. Duke Children's Hospital is doing their annual Radiothon and they have asked me to share Eliana's story. I'll be talking with Bill and Sheri of MIX 101.5 for those of you that are local. They liked the idea of the heart connection with the holiday.
I would love prayers for clarity and words to share that would offer hope and encouragment. I have no idea how long it will be (I"m guessing not very) or if I'll be asked questions. I'm excited about the opportunity.
*~*~*~
Here's the funny story. I was just giggling over this and thought it may give some of you a laugh too.
Anyway, Christopher mentioned motorsports engineering and I said that it would mean he needed to focus on his math. He also talked about being interested in sports medicine, to which I responded that good math and science skills were needed there.
Blessings,
Leslie
We visited the Down syndrome clinic this week. I considered cancelling as it was the same day as a field trip. Since this only happens once per month it is hard to reschedule (and often conflicts with our field trips!). I called about an earlier time, but was encouraged to show up a little early and that it would hopefully not take too long.
I didn't go early and am really glad of it as it would have made NO difference. (I was told I could get labwork done early, but the lab tech showed up after I did!) It's nice to see a positive in not running early in the morning. LOL
What I thought would take about an hour - ended up lasting 4 hours. It was a long morning. Thankfully Roger had been able to take time off to be with our children and they all had a fun morning/lunch celebrating the Chinese New Year.
We waited for more than 1.5 hours before being seen. During that time though I saw several other familes that had a child with DS. It was interesting to me to see a variety of ages from 2 to teen. I enjoyed watching the children and also their interactions with siblings and/or parents. I talked with one mom there who shared some of her thoughts on DS. These are things I've heard before and have to admit that it rings true with me too.
She talked about the blessing of her son. She also said that she wondered sometimes if "we" weren't the ones with the problems - not the ones with DS. In addition to being "advanced" also comes the addition of violence, hatred and bitterness that isn't seen so often in those with DS. Now, I'm not saying that people with DS are without sin- far from it! I've seen impatience, disobedience and tempers. I've also seen an incredibly loving and forgiving nature that is quite beautiful. I wonder if these sweet souls are here to help us learn about unconditional love, forgiveness, patience and appreciating the small things in life. I know that those are lessons that I can stand to learn!
I was asked a lot of questions about Eliana's progress, development, medical history, etc. We met with the dr who thinks Eliana is doing well. Since we are very well connected medically (cardiologist, ENT, eye doctor, great ped, therapists, etc already in place) we did not need to see any of those folks at the clinic. (They coordinate all of this for people that do need the services.)
We talked some about various testing. She thought Eliana needed to be tested for thyroid and an ABC (don't remember what this is). She cancelled the iron test and the celiac screen. Eliana hasn't had a lot of exposure to wheat or a variety of foods so those tests would probably not reveal any useful information. She noted that people with DS have elevated red blood cells (who knew?) and that this can mask problems with iron deficiencies. (This dr has studied this specific thing.) We will probably test for this at the next visit in 6 months.
While I didn't enjoy the hours spent waiting, I'm glad we were there. It was good to see other families and children. It's always nice to hear encouragment on your child. Eliana was a complete doll! She had fallen asleep before her blood draw - and even after waking up to that (Ouch!) she was a sweetie (after crying for a short while).
As I was leaving, Eliana was in the stroller and we were waiting to check out. A young man with Down syndrome (teen) was in front of us. When he saw Eliana, he commented baby and started walking toward her. I wasn't sure what he would do and just watched. He stared into her eyes and began very gently stroking her face. At the same time she just stared up at him. It was such a sweet and tender moment.
We are incredibly blessed to be living in a time and an area with such great services for Eliana. I am thankful to be here. I wish all children that needed these services could get them.
Blessings,
Leslie
I'm sorry for not updating sooner. Things have just been busy and it's been hard to find much computer time.
Cardiology - We met with our cardiologist on Monday. It was our first appt in 6 months! What a long time that seemed after being in there sooooo often. It was a long day - 4 hours there - but a good one. Eliana had an EKG which is a simple, painless test that she didn't mind at all. She did well on that. We saw our card briefly then before heading to get an echo.
This is where it took a loooooong time. We answered questions, then it was time for her to get sedated - and she really fought it! I was surprised at how long she hung in after being given the sedating meds (directly into her tummy too!). The echo then took about an hour. There was a fellow there learning and she spent time looking taking pics after the other gal finished.
Then we went back to see our card. The great news is that her repairs look wonderful! She does have some small leakage around one of her valves, but this is not related to her surgery. This is not a problem at this point, but will be monitored, as will her repairs, for life.
At one point our card smiled at me and reminded me that he had said that the heart repair would be the easy part - now came the work. I'm not sure on that though. Going through the trial of heart failure and surgery was so very hard - frightening and overwhelming. It was scary. I'm sure that learning to deal with all of the issues surrounding Down syndrome will also be a challenge - but hopefully not in the dramatic and life-threatening way of heart surgery. I do know that this did cause me to lean on God in ways I've never had to do. I would not choose this for anyone, but I can see good that has come from it. So while the situation wasn't good - it was worthwhile.
ENT - We went to our appointment only to find out that I had the date wrong. *blush* What a silly thing for me to have done. I wrote down the 5th and instead it was the 25th. Guess we'll be waiting a couple more weeks for news on her hearing.
Therapies - She is doing well. We are seeing improvements in all areas which is encouraging.
Physical - She is learning to climb the stairs. A necessary skill, but not one I'm thrilled about teaching her. LOL We have always discouraged this in the past. She is still working on pulling to a stand. She can do this on low objects (like me when I lie on the floor) but has trouble with higher things like the sofa.
OT/Feeding - Improved from last week when her tongue seemed to be in the way. She is eating about 1/2 of a square container of baby food once a day. Slow going, I know, but it is progress. She is doing well with her formula and we haven't used the tube in months! Oh, her weight gain looked great at a couple of appts this week so I'm encouraged that we will soon get the approval for the removal of the tube!
Speech - We hadn't seen the therapist in about 10 days and she was really impressed with Eliana's improvement. :-) She is pointing to a baby in the book when we ask where is baby. She is learning and responding to things we are asking which is really fun to see.
I need to go help Eliana so will write more later on the Down syndrome clinic, Chinese New year and more.
Blessings,
Leslie
I'm going to apologize in advance if this entry is dry. I'm battling some sinus stuff and my head really hurts. I do want to update on our week though as it is a busy one.
Today we are relaxing and hanging out at home. I enjoy those days. I waver between wanting to play and wanting to "get something done". It's hard to rest at times when I look around and see so many things that need to be done. Those things will still be there tomorrow though.
Monday - We have an appointment with Eliana's cardiologist. It's been since last summer since we saw him. (We did see him on various week-ends at our daughter's soccer games as well as at heart functions.) I'm not sure what types of tests will be run, but am anticipating a good report. I'm hoping it won't be a really long day, but am thankful that we have been able to go months without having to visit there!
Tuesday - We have a return visit to the ENT. Again, I'm anticipating a good report. Her hearing looked good at the last visit and we have seen no reasons for concern regarding her hearing. Thankfully she has not dealt with any ear infections!
I'm considering a week-end away next month with friends. I'm concerned about flying with Eliana and any difficulties it might pose for her. I'm hoping he can share information on this as well. We flew when Isaiah was a baby and he had difficulty with his ears adjusting to the altitude (fell asleep before the flight). It was a miserable trip for all of us. I don't want to repeat this!
Wednesday - Our therapy day. We are working with Daniel on various sensory things - trying to help him learn to deal better with things and not just "melt down". It's hard at times to discern what it just misbehaviour and being whiney (yuck!) and what is a real issue for him! We are working on it though.
Eliana is learning more and more. We are helping her learn to climb the steps. (I'm not really sure I want her to know how to do this though I do realize that it is a necessary skill.) She is able to do is with some assistance, though it often tires her out. We are also helping her learn to pull to a stand. She can do this on low objects, but not higher ones (like our sofa) yet.
Thursday - We have a field trip with our homeschool group. We are doing a program at the library on Chinese New Year. There is an ESL class meeting there before our program and a Chinese man in the class has agreed to talk with our children about his perspective on this holiday. Isn't that cool? Afterwards we will be going out to lunch at a Chinese restaurant.
Friday - Speech therapy. We are working on helping Eliana learn to identify objects and begin to point to them. All of the things that children typically just learn and do on their own. We are having to be more intentional about teaching these things to Eliana. One of the things we are doing is reading a peek-a-book book with baby faces in it. She enjoys this book. We are hoping she will begin to point or pat the baby when we ask "Where is baby?" She enjoys doing this which is fun.
We also do a small co-op type activity with another friend on this day. The older boys do a science lab while the younger children are doing an art lesson. We are hoping to add in an electronics class to this too. It's a fun afternoon.
That's about it for the week - I think. I will update on the various appointments as I'm able to.
Blessings,
Leslie
I've been corresponding over the last year with a dear friend from college. I've been blessed by her prayers and encouragment and thankful to have her as a sweet part of my life. One of the things we have been talking about is purpose and God's calling on our lives. Both of us are searching and talking with God about what exactly it is He is calling us to do.
She shared with me a portion from a friend's carepages that I wanted to share with you. This was written by a Mom who has recently lost her 13 yo daughter to cancer. It was an aggressive and quick illness. My friend notes that through it all this dear sister has been an encouragment to keep our eyes on God. I know that her words encouraged me and I hope that they will you too.
God's timing is always perfect and this was no exception. I have been studying the life of Elijah. Today, I focused on I Kings 18 where Elijah had to challenge Ahab to determine which god was the strongest...God or Baal. Elijah's ministry was not his idea but God's. He did not come up the idea and then ask God to bless it. He was simply walking w/God and obeying what God had told him to do.
Later in the morning, John (her husband) came to me and said "we have a new ministry and I do not like it." He was referring to our new ministry of helping parents cope when they lose a child. Right now we can hardly cope ourselves, however, we know the day will come when someone will need our support which will be unmatched by others who have not walked this path. John did not realize I had studied the passage earlier in the day which followed exactly his thoughts. John and I did not sit in a chair and raise our hand acting like an anxious student saying "oh, oh, oh, pick me, pick me, pick me!" You know the scene to which I am referring. We never asked for this ministry.
What I learned from Elijah was that true ministry is initiated by God, which means it is received, not achieved. A God-initiated ministry comes only through following God in a relationship of dependence. We have no say in the gifts God gives us. We must use whatever He gives us and follow Him.
The ministry I envisioned was that Ashley would be completely healed on this side of heaven and I was going to take her on tour to visit the youth groups who had been praying for her so that the kids could see a walking miracle of God. Instead, He chose to completely heal her on the other side and allow her life to impact the world. It is up to John and I to continue to walk closely w/God and to do the work He has called us to do...even with huge broken hearts!
Colossians 4:17 "Take heed to the ministry which you have received in the Lord, that you may fulfill it."
I know that I identify with the vision of ministry that she describes. I was content in the ministry opportunities that I had - ones that I had "signed up" for voluntarily. I did not want a new ministry. I saw a friend (that I haven't seen in awhile) earlier this week and as we talked she said that she remembered me saying before Eliana was born that I didn't think I could handle being the mom of a special needs child. She also said that she told her Sunday school about me when she was talking about God's grace in watching all that unfolded after Eliana was born. That blessed me incredibly!
I know that I had friends tell me shortly after Eliana was born that "I would have a story to tell". I also remember thinking - and perhaps saying - that I didn't *want* a story to tell. Guess my heart was pretty hard about it all, huh?
Well, I think I'm becoming more comfortable with this new ministry. I called my OB office this week and said that I would love to be a contact for anyone with an ultrasound screen of Down syndrome or that has had a child born with Down syndrome. They seemed really excited at the idea of having me as a contact. I know that there are a lot of negative misperceptions about having a special needs child and if I can help encourage someone in any way, I would count it a privilege.
I am also being given another opportunity to tell Eliana's story. This time it will be during Duke Children's hospital's Radioathon fundraiser. I'll be interviewed (with Eliana) on Valentines Day. They liked the heart connection for that day. I'm not sure what I'll be sharing, but hopefully it will be a message of hope and encouragment.
Rebecca may be making another donation on that day as well. If any of you are interested in helping with her sales, please email me. As of now, she doesn't have a large amount to donate (compared to the fall) so I'm not sure if that will happen or not.
Thank you friends for walking this path with us. I'm thankful to be on this road.
Blessings,
Leslie
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