Lately, I find myself having conversations I never imagined. Like the other day with Jayden and Brooklyn’s palliative nurse. Or the one I had with their sister, Ellie, on the floor of her bedroom.
I guess when two of your kids are labeled “terminally ill” these conversations are bound to happen. For those of you new to our story, we have 3 children, the two oldest, Jayden (10) and Brooklyn (7) have a rare and terminal disease, Sanfilippo Syndrome. Our youngest, Ellie (4) is does not.
This piece is part two of a series of blog posts entitled, Confessions as I Anticipate Grief.
WARNING: Friends in painful places, especially for my “me too mamas,” my Sanfilippo sisters. This is a difficult read. I wouldn’t have read it even a year ago. It just depends on where you are in your diagnosis. Just know it is here when you need it. But, I am 7 years in and this is our reality. A tough, gut wrenching, honest, reality. Sometimes it can be too much. But isn’t it all?
My intention is to share truth. Here’s what I promise if you choose to read. You will see me rise. Just like you are rising. We are not just surviving, but thriving in the midst. Death doesn’t win. We don’t drown. I am tired of trying to avoid the darkness, because light is so much brighter when we acknowledge how dark it is. Thank you for showing up in the meeting for a club you never wanted to join. Since we are all members, may these be our words. Continue reading “Confessions As I Anticipate Grief: part 2”
Confessions as I Anticipate Grief is a series of posts I will be releasing on StefanieBoyce.com. This is part one.
“If people bring so much courage to this world the world has to kill them to break them, so of course it kills them. The world breaks every one and afterward many are strong at the broken places. But those that will not break it kills. It kills the very good and the very gentle and the very brave impartially. If you are none of these you can be sure it will kill you too but there will be no special hurry.”
-Ernest Hemingway, A Farewell to Arms
Continue reading “Confessions as I anticipate grief: part 1”
Another day of waiting…
I had the opportunity to start connecting with other moms who have children living with MPS. It is strange how close I feel to people I have only shared a 20 minute phone conversation or an e-mail with. I guess when the path you always thought you were on is detoured, and you meet others on this new path, you don’t have to explain what you see on the new path now, cause they see it. You don’t have to talk about your previous path, cause they’ve been there and were detoured too. You just start walking together. One foot in front of the other.
Continue reading “still waiting…”
Just wanted to post a quick update. We have no news on Jayden’s test results. We are hoping to get some news today. We are prepared to hear he has Sanflippo and which type out of the 4 he has. Well…actually as I write that, I don’t know how “prepared” you can be to get news like that….
Anyway, we are still praying. We are still encouraged by your words. We are still praying for a miracle that the test results will be better than we imagine. We are still holding onto the chance that Brooklyn’s test could be a false positive and that her bloodwork comes back “normal”.
I have found comfort in speaking with Laurie of the national MPS society. She has been holding my hand through this all. I also had the opportunity to speak with another mom who just found out this past July her daughter has Sanfillipo. She is 2 1/2. Her sister, 5 mo. is a carrier but does not have it. She lives in Roscoe…only 20 minutes away from my hometown, Rockford. We plan on meeting up soon. She is a Christian…a little futher into her journey with MPS. I hope our time together will be fruitful.
Keep praying with us. Pray for Brooklyn’s test results. Pray for Jayden’s results to be mild. Pray for our family who is crying with us. Pray for strength for Justin as he is having a difficult time with all of this. Pray for our marriage to be strengthened. Pray for wisdom for the Doctors and for us as we begin our journey living with this. We are not gonna stop and grieve. We are going to live-just better than before. We are going to make memories. We are going to thrive. We are gonna let people see Christ in this, not defeat. We are not gonna let Sanflippo define our children or us, WE are gonna define it.
Thank you for your continued prayer and words of encouragement. God is using you more than you realize. We meditate on the words you send us cause we struggle finding the words ourselves. We love you!
Just when I thought I was getting my mind wrapped around this intruder in our home, we get news that Brooklyn, our 3 month old baby girl, most likely has MPS too. Her urine came back with elevated levels of sugar consistant with MPS. Next steps? other than crying my eyes out? We wait. We wait for Jayden’s test to confirm MPS III and figure out which type out of four he has of Sanflippo. Then, we test Brooklyn to confirm she has the same. Why is this the will of God for my children? I can’t get my mind around this. Is good gonna come out of this? Yes. Is God still gonna be glorified? Sure. But REALLY…BOTH of my kids???
God can still preform a miracle. What would that look like here? Well, he could get rid of MPS in both my children. He could have the retest of Hunter’s come back positive and Brooklyn’s urine really was a false positive and she is fine. Can that happen? Of course. Will that happen? I don’t know but God does. The worst case? They both have Sanfilppo and we live with it. Key word LIVE. They are not gone yet. Jayden is still lighting up a room, running around asking for snacks, juice and “my dadda”. He is still progressing. Brooklyn just started to smile. How can we put them in a coffin now? We don’t do that with healthy people until we realize they are dead. I am not gonna grieve for my children when they are still here. I am gonna force myself to crawl out of this dark hole and fight to live in each blessed moment the Lord gives me with my children, darn it! This is the promise that God gives us, He alone has overcome the world and I want to start living like it.
Keep praying. I am crying out to God but most of the time I am relying on the Holy Spirit to do it for me. Will you pray for a miracle?
Thank you for your outpour of love a support!
Sorry I am so fired up right now! I am starting to realize how theraputic this blog thing is for me!
So I just spent 15 minutes typing this and it all deleted…so here I go again.
We found out Jayden does not have Hunters Syndrome. So what does that mean? It means that Jayden will have more blood work done to see if it is MPS III, Sanflippo Syndrome or another form of MPS, results take 5 days so we will hear back Tues or sooner. Pray for sooner. Also, it means Brooklyn is now 25% at risk because it is a recessive x-linked disorder that Justin and I now know we pass down. Pray Brooklyn does not have MPS. She will have a urine test done tomorrow when we go to Children’s in the city to meet with an expert on MPS at 11AM. We should get results back Friday. Right now, the only two syndromes with enzyme replacement therapy are Hurlers and Hunters which have been ruled out. Pray that whatever Jayden (and potentially Brooklyn) has will have a treatment/cure found in their lifetime.
We continue to hope and pray and lean on all our friends and family. In the last 24 hours we have had a prayer vigil set up by our dear friend, Katie where people prayed all through the night. We had the staff of Immanuel pray over us. We continue to receive e-mails and text of people praying. We had three of our friends bring us dinner last night and stay to share tears, laughs and stories. I believe God is listening and providing exactly what we need. We are feeling an unexplainable peace and KNOW it is God. We are ready for the “worst” and we are hoping for the best. We know God is not scrambling but we believe God is changing his mind due to your prayers. Pray we will continue to have an eternal perspective.
I also spoke with a woman from the MPS national society. She said we are doing everything we could do. She also said that it is strange that with Jayden’s presenting symptoms the results didn’t show MPS II (Hunters) because he doesn’t exactly fit the other MPS descriptions. Does this mean anything…we don’t know but we feel God may just be up to something. I said I would wear a sack cloth if God did a miracle but don’t hold me to that…I love Old Navy too much!
We continue to rely on you, and thank God for you in our prayers. You sustain our minutes, hours, and days of waiting. We rejoice that people who don’t regularly pray are praying, and Jayden is already doing greater things for the kingdom than any other 3 year old I know. We are on earth to draw others to Christ and this is what his life is doing in astounding ways now and will continue to do throughout his lifetime–long or short! I hope God will be able to say the same for us all!
Love you and will keep updating as we hear.
“These things I have spoken to you, that in Me you may have peace. In the world you will have tribulation; but be of good cheer, I have overcome the world.” (John 16:33 NKJV)
(thanks for this Burt!)
A quick update…we were not able to receive the test results today as we hoped. Bummer! Guess we are waiting another day. The genetic counselor said it would be Tuesday morning. So…back to our knees!
As we welcomed baby Lucy, we rejoiced in God perfect design and plan! Just the fact He can create life is awesome! We rest in the fact that he created Jayden and Brooklyn in the same way. Although at times it is hard to be feeling such a mixed bag of emotions all at once…we are thankful. God continues to bring peace. Today was a day of anticipation. My cousin gave me a message from the chapel on Anxiety and the Lord took the opportunity to speak through it. The basis of the message is God brings us peace through prayer (Phil 4:6-7). I came home from the hospital today sad, and decided to get into Scripture and on my knees. And that Scripture came to life in me. How great is our God!? I feel in my heart that without this time with God in prayer and petition, waiting another night could have crushed me. Instead, I have a peace that is unexplainable. In my mind, I am reminded that God can change His mind and has before because people cried out to Him. I believe that He has heard our prayers and has done exactly that and it is the reason we didn’t get results today. His perfect will…His perfect timing…
We believe and see God already using this to bring Him glory. How can we not rejoice in that!?
6 Don’t worry about anything; instead, pray about everything. Tell God what you need, and thank him for all he has done. 7 Then you will experience God’s peace, which exceeds anything we can understand. His peace will guard your hearts and minds as you live in Christ Jesus.
THANK YOU for sustaining us and letting God speak to us through you. We are listening.
We want to thank you for the overwhelming response we have received. We couldn’t do this without you. please don’t stop praying. Did I mention how good God is?! He has put all of you in our lives…in this moment..to wrap us in a warm blanket of love as we face the cold. The comfort from God is directly coming from you. Your words, now nine pages long, are posted on our refrigerator, reminding us of God’s goodness! The words of encouragement, whether spoken in prayer, in tears, in e-mails are like sweet honey. We are clinging to them. So, thank you just doesn’t seem like enough.
Jut and I are hanging in there. We each take turns crying. We are being optimistic as we try to process what we know. There has been some great info we have read online and we are hopeful. We are just trying to survive the waiting game as days are blending together. The most important thing is for us to not loose sight of today. Today is another gift with our children. We can’t loose sight of this. We again are thankful to God for helping us see the good in all of this. We are trying to avoid the darkness of “what if?” and we are trying to enjoy all the moments we have. We are learning to not just “do” life but embrace it. We are feeling the urgancy to cling to God like never before. Our days are not promised…nor are they IT…what wonderful things Heaven promises!
Please, enjoy your family and loved ones today. As you think of our family…rejoice in God and take a moment to intentionally enjoy family as we are enjoying ours.
We will keep you posted!